Re: Dx w/ RA 12/02 - Looking for Meds experience

[Guest guest]

--- In , " saralaughs02 " <saralaughs02@y...>

wrote:

> Here are my questions:

> How long and how progressed is your RA?

Diagnosed 17 months ago. Aware of a connective tissue problem (had

lab tests and visits with a rheumy for about 6 years)

> What drug are you on? It is injectible?

plaquenil, celebrex, methotrexate, folic acid. (Am also currently

trying two Chinese medicine remedies under the guidance of my

acupuncturist.)

> What therapies did you try before turning to Rx therapy?

Primarily nutritional and acupuncture

> How long did it take for RA to progress to get you to try Rx

therapy?

As soon as I was diagnosed, I started disease modifying anti-

rheumatic drugs.

> What side effects have you had?

Though Plquenil is supposed the be the mildest of the DMARDs, I had a

number of odd effects from it at first...excessive thirst, slowed

thinking, etc. They all went away in time. No side effects from the

celebrex. Methotrexate was a scary thing to read about and consider

taking, but it has helped me tremendously, and the only side effects

I've had have been next-day tiredness. All of my lab tests have been

completely normal. Never had any nausea, though I was on the highest

oral dose for awhile.

> If you work on your feet or using your hands, how do you deal with

the

> pain both during and after? (Sometimes I can barely stand long

enough

> to cook my family's meals, as it hurts clear down through my shins

and

> joints.)

Ice, elevation, hot rice bags, balms, self massage.

>

> Thank you in advance for anything you have to offer.

>

> Sara

Good luck, Sara!

[Guest guest]

> Here are my questions:

> How long and how progressed is your RA?

Diagnosed 17 months ago. Aware of a connective tissue problem (had

lab tests and visits with a rheumy for about 6 years)

> What drug are you on? It is injectible?

plaquenil, celebrex, methotrexate, folic acid. (Am also currently

trying two Chinese medicine remedies under the guidance of my

acupuncturist.)

> What therapies did you try before turning to Rx therapy?

Primarily nutritional and acupuncture

> How long did it take for RA to progress to get you to try Rx

therapy?

As soon as I was diagnosed, I started disease modifying anti-

rheumatic drugs.

> What side effects have you had?

Though Plquenil is supposed the be the mildest of the DMARDs, I had a

number of odd effects from it at first...excessive thirst, slowed

thinking, etc. They all went away in time. No side effects from the

celebrex. Methotrexate was a scary thing to read about and consider

taking, but it has helped me tremendously, and the only side effects

I've had have been next-day tiredness. All of my lab tests have been

completely normal. Never had any nausea, though I was on the highest

oral dose for awhile.

> If you work on your feet or using your hands, how do you deal with

the

> pain both during and after? (Sometimes I can barely stand long

enough

> to cook my family's meals, as it hurts clear down through my shins

and

> joints.)

Ice, elevation, hot rice bags, balms, self massage.

>

> Thank you in advance for anything you have to offer.

>

> Sara

Good luck, Sara!

[Guest guest]

Sara,

I will Answer you questions as you have asked them. But to give you some

background info I am 40 yo and was Dx'd 3-4 yrs ago after suffering for almost

a year. My symptoms came on gradually and I thought they were all just from

stress and over work until my hands were twice there normal size, numb and of

no use.

I have since dx had left carpel tunnel release which worked wonders for the

first year and is now OK. I have a lot of damage in my hips. My last x-ray

should severe arthritic changes in the hip joint and I have bone spurs

floating around in the joint. I am waiting to see ortho doc to see what can be

done

about that. I current have no rheummy as my lat one moved away and I am

waiting for appnt with new doc. We only have one doc in my city and with in a

nearly 100 mile radius.

I have been on the following drugs in the order I have taken them: Arava,

prednisone, MTX(pills and injections) Enbrel, flexeril, Bextra, Lodine, folic

acid and leukovorin...there are many other meds I have been on that are no

specific to treatment for my RA..and those are prozac, zoloft, lexapro, ambian,

sonata, elavil, trazadone, prevacid, nexium, ultram, darvocet and toradol.

Currently I am on lodine XL and Nexium to protect my stomach from the

lodine. I am a sugical weight loss patient( lapband) and as a general rule any

medication that can cause ulcers or GI distress is avoid if possible. These are

oral medications.

Before and during traditional therapy I was taking evening primrose oil to

help with inflammation, valerian root for sleep and fish oil..which did nothing

for me. I also take multi-vitamin daily.

I was placed on DMARD treatment immediately with Arava, bextra and

prednisone. The arava is an oral pill that work well for me for about a year

and

stopped working. It is not a drug of choice if you are still planning to have

more children as it is fetal toxic. There is a way to purge the drug chemical

out your system..but it is recommend that you wait 6-12 months after the last

does before becoming pregnent. It does require close monitoring of liver

and kidney function via bloodwork. I use to go every two weeks. As this drug

can do damage if not supervised closely. I had no side effects from it.

Bextra was a life saver for me until they took it off the market..and now I am

left with nothing I can take. My surgeon even used it for post-op swelling as

it was soo easy on the stomach. Prednisone I hated....cause svere GI

distress, made me very cranky and I had NO appetite. This was on doses as

small as

2.5 mg to 5 mg a day. I finally stopped the prednisone on my own. My doc

also required that I take calcium suppliment every day that I was on prednisone

because it ruins your bones.

I changed rheummies and the new doc also changed my meds. He felt the Arava

was not effective enough and the disease was progressing. So I started

Methotrexate pills. It was HORRIBLE!!! I could not work for all the side

effects. Constant vomiting, diarrhea, nausea, dizziness, headache, fatigue and

weakness. Then I started with a cough that ran for a month that even my

rheummy

ignorred....my internist noticed and I was told that I had drug induced

pneumonitis and stopped MTX immediately...this can be fatal if left untreated.

I

was lucky that no permenent damage was done to my lungs and they healed. So

he put me back on MTX but the injections. The same side effects came back

but were even worst and then I started with mouth sores, eye sores, throat

sores, genitalia sores and he upped my folic acid from 1mg a day to 5 mg a day

and then added leukovorin to that to try to stop the side effects. Finally

enough was enough and I stopped taking MTX on my own. The side effects where

not worth any little bit of good the drug was doing. I lived in bed or laying

on the bathroom floor. During this same time he also started me on Enbrel

twice a week. At first it worked great...then I started getting skin

reactions as well as it appeared the drug was becoming less effective for me.

I also

had some insurance changes that made it very expensive. So I stopped it too.

My rheummy before he moved away a month ago prescribed Humira. I am still

waiting to start it as he forgot to fill out the paperwork for financial

assistance. So I will wait until I see the new doc to see what he plans to do.

I

really do not want to take any more of the TNF DMARD drugs. My reason is I

have one friend that went blind in one eye from rare side effect of Enbrel

and another friend that has Lymphoma from taking remicaide. Another lady I met

that nearly died of infection from Humira. So I am looking at kineret..draw

backs is that its a daily injection which I am not thrilled about..yet

another expensive drug..and something the requires refrigeration so it will be

a

pain to drag around. I have heard that for many with allergies they get good

response from it as it is similar in action to the drug singular, but it does

not work for that many people.

I have been offered Rituxin..but I refused...this is yet another chemo

drug...which methotrexate is a chemo drug also...NO more chemo too many side

effects. Remicaide must be given IV and I have terrible veins and would need a

line just to get it and I do not want that..plus the side effects and such are

a big NO for me.I can not take plaquinil or Azuflazine because I am allergic

to both.

so maybe a magic drug is on the horizin.

I use to work for a major computer manufacturer standing 10-12 hrs a day

working with very small electronic parts. I can no longer do that and my job

fired me and put me out on disability. I still cook and do a little at

home..but in small spurts. I have days where my hands hurt really bad and

others

where they are fine. I would suggest getting adaptive devices to help. I have

replaced the regular door knobs with french handles. My kitchen faucet has

flip handle now. Large handled knives, and can openner.

In also of this I had my weight loss surgery May 2004 and I went into

remission for about 9 months and took NO meds. But it soon ended.

Toni

RA, OA and Fibro

Lapband 5/04

In a message dated 6/28/05 4:49:39 A.M. Central Daylight Time,

writes:

Here are my questions:

How long and how progressed is your RA?

What drug are you on? It is injectible?

What therapies did you try before turning to Rx therapy?

How long did it take for RA to progress to get you to try Rx therapy?

What side effects have you had?

If you work on your feet or using your hands, how do you deal with the

pain both during and after? (Sometimes I can barely stand long enough

to cook my family's meals, as it hurts clear down through my shins and

joints.)

Thank you in advance for anything you have to offer.

Sara

[Guest guest]

Sara,

I will Answer you questions as you have asked them. But to give you some

background info I am 40 yo and was Dx'd 3-4 yrs ago after suffering for almost

a year. My symptoms came on gradually and I thought they were all just from

stress and over work until my hands were twice there normal size, numb and of

no use.

I have since dx had left carpel tunnel release which worked wonders for the

first year and is now OK. I have a lot of damage in my hips. My last x-ray

should severe arthritic changes in the hip joint and I have bone spurs

floating around in the joint. I am waiting to see ortho doc to see what can be

done

about that. I current have no rheummy as my lat one moved away and I am

waiting for appnt with new doc. We only have one doc in my city and with in a

nearly 100 mile radius.

I have been on the following drugs in the order I have taken them: Arava,

prednisone, MTX(pills and injections) Enbrel, flexeril, Bextra, Lodine, folic

acid and leukovorin...there are many other meds I have been on that are no

specific to treatment for my RA..and those are prozac, zoloft, lexapro, ambian,

sonata, elavil, trazadone, prevacid, nexium, ultram, darvocet and toradol.

Currently I am on lodine XL and Nexium to protect my stomach from the

lodine. I am a sugical weight loss patient( lapband) and as a general rule any

medication that can cause ulcers or GI distress is avoid if possible. These are

oral medications.

Before and during traditional therapy I was taking evening primrose oil to

help with inflammation, valerian root for sleep and fish oil..which did nothing

for me. I also take multi-vitamin daily.

I was placed on DMARD treatment immediately with Arava, bextra and

prednisone. The arava is an oral pill that work well for me for about a year

and

stopped working. It is not a drug of choice if you are still planning to have

more children as it is fetal toxic. There is a way to purge the drug chemical

out your system..but it is recommend that you wait 6-12 months after the last

does before becoming pregnent. It does require close monitoring of liver

and kidney function via bloodwork. I use to go every two weeks. As this drug

can do damage if not supervised closely. I had no side effects from it.

Bextra was a life saver for me until they took it off the market..and now I am

left with nothing I can take. My surgeon even used it for post-op swelling as

it was soo easy on the stomach. Prednisone I hated....cause svere GI

distress, made me very cranky and I had NO appetite. This was on doses as

small as

2.5 mg to 5 mg a day. I finally stopped the prednisone on my own. My doc

also required that I take calcium suppliment every day that I was on prednisone

because it ruins your bones.

I changed rheummies and the new doc also changed my meds. He felt the Arava

was not effective enough and the disease was progressing. So I started

Methotrexate pills. It was HORRIBLE!!! I could not work for all the side

effects. Constant vomiting, diarrhea, nausea, dizziness, headache, fatigue and

weakness. Then I started with a cough that ran for a month that even my

rheummy

ignorred....my internist noticed and I was told that I had drug induced

pneumonitis and stopped MTX immediately...this can be fatal if left untreated.

I

was lucky that no permenent damage was done to my lungs and they healed. So

he put me back on MTX but the injections. The same side effects came back

but were even worst and then I started with mouth sores, eye sores, throat

sores, genitalia sores and he upped my folic acid from 1mg a day to 5 mg a day

and then added leukovorin to that to try to stop the side effects. Finally

enough was enough and I stopped taking MTX on my own. The side effects where

not worth any little bit of good the drug was doing. I lived in bed or laying

on the bathroom floor. During this same time he also started me on Enbrel

twice a week. At first it worked great...then I started getting skin

reactions as well as it appeared the drug was becoming less effective for me.

I also

had some insurance changes that made it very expensive. So I stopped it too.

My rheummy before he moved away a month ago prescribed Humira. I am still

waiting to start it as he forgot to fill out the paperwork for financial

assistance. So I will wait until I see the new doc to see what he plans to do.

I

really do not want to take any more of the TNF DMARD drugs. My reason is I

have one friend that went blind in one eye from rare side effect of Enbrel

and another friend that has Lymphoma from taking remicaide. Another lady I met

that nearly died of infection from Humira. So I am looking at kineret..draw

backs is that its a daily injection which I am not thrilled about..yet

another expensive drug..and something the requires refrigeration so it will be

a

pain to drag around. I have heard that for many with allergies they get good

response from it as it is similar in action to the drug singular, but it does

not work for that many people.

I have been offered Rituxin..but I refused...this is yet another chemo

drug...which methotrexate is a chemo drug also...NO more chemo too many side

effects. Remicaide must be given IV and I have terrible veins and would need a

line just to get it and I do not want that..plus the side effects and such are

a big NO for me.I can not take plaquinil or Azuflazine because I am allergic

to both.

so maybe a magic drug is on the horizin.

I use to work for a major computer manufacturer standing 10-12 hrs a day

working with very small electronic parts. I can no longer do that and my job

fired me and put me out on disability. I still cook and do a little at

home..but in small spurts. I have days where my hands hurt really bad and

others

where they are fine. I would suggest getting adaptive devices to help. I have

replaced the regular door knobs with french handles. My kitchen faucet has

flip handle now. Large handled knives, and can openner.

In also of this I had my weight loss surgery May 2004 and I went into

remission for about 9 months and took NO meds. But it soon ended.

Toni

RA, OA and Fibro

Lapband 5/04

In a message dated 6/28/05 4:49:39 A.M. Central Daylight Time,

writes:

Here are my questions:

How long and how progressed is your RA?

What drug are you on? It is injectible?

What therapies did you try before turning to Rx therapy?

How long did it take for RA to progress to get you to try Rx therapy?

What side effects have you had?

If you work on your feet or using your hands, how do you deal with the

pain both during and after? (Sometimes I can barely stand long enough

to cook my family's meals, as it hurts clear down through my shins and

joints.)

Thank you in advance for anything you have to offer.

Sara

[Guest guest]

In a message dated 6/28/2005 2:14:38 PM Eastern Daylight Time,

saralaughs02@... writes:

I'd rather deal with the pain and surgeries from joint replacements. At

least with those, I know I'll survive. I'm just not sure about the side effects

and how

often they REALLY occur in life, kwim? They can say " rare " or 2% chance, but

what is that in real terms?

I don't have the stats handy, but, RA isn't just about pain and and

solving that pain with joint replacements. If you want to live a long, healthy,

productive life...if you want to continue taking care of your children, you need

to know that. I don't want to scare you. But, it's important you're aware of

the facts. You need to know what may happen if you let your disease go unchecked

and untreated. I'm not saying these things will happen to you. I'm just

passing on some of the many, very real consequences of untreated RA for your

consideration. You need to understand this disease before you make a firm

decision

against medication.

Most people with untreated RA will not have anything close to a 'normal'

life. Most will shorten their lives considerably. The 'side-effects' of this

disease are far more horrific and life-altering/threatening than any of the

medications that are thankfully available to slow down the disease process. The

side-effects of this disease, unchecked, kill far more people than the truly

'rare' side-effects of the drugs. That's proven medical fact.

Unfortunately, I learned these facts firsthand. I, too, chose not to treat

my disease when it began 22 years ago. I was 25 years old and fearless. I was

going to be the one to beat this without those nasty, scary old drugs. For

awhile, I thought I was beating it. I had a few short remissions, where it was

easy to believe the diagnosis was a mistake. I had 4 pregnancies that also

allowed for 4 longer term remissions. I 'knew' I had licked this disease until

the

end of my 4th pregnancy. While pretending I was fine and denying the

seriousness of my disease...it marched on. It slowly and surely, devastated my

body,

even when I was feeling well. Silently, sneakily, it stayed with me until one

day it reared it's ugly head out of nowhere.

Almost overnight, I became totally incapacitated. The pain so bad, it made

me vomit. Couldn't sleep. Couldn't turn over in bed. Couldn't get to the

bathroom by myself or take care of personal hygiene. Couldn't shave my legs or

put

on makeup. Couldn't tie my shoes or zipper my pants. Couldn't shower by

myself, or wash or comb my hair. Couldn't cut my food or feed myself, which

didn't

matter, because my jaws were so painful, I couldn't eat anyway. Couldn't push

a vacuum, much less pick up a dust rag. Couldn't walk or drive. Couldn't even

hold my babies, much less take care of them. Basically, I couldn't do anything

except feel sad and hate myself for living in denial for too long. When I

finally sought treatment, far too much damage had been done for most of it to be

fixed. The disabilities and deformities are permanent. Luckily, some great

drugs brought some semblance of control back to my life. I'm able to take care

of

myself, my children, husband and home again. But, unless some miracle

happens, I won't ever again live a day without pain in this lifetime.

One of my 'missions' in this life is to make sure that newly dx'd RA

patients know what can happen to them if they don't take care of themselves.

It's

really, really important to know the facts in the earliest stages. And, if

anyone sadly has to be dx'd with RA, this is an excellent time in medical

history.

There are some amazing treatments available that weren't available 20+ years

ago.These drugs can stop the disease in it's tracks. Many people who these

drugs work for will never, ever have to know, the very real, horrific and

life-altering things that RA can do to a body.

Along with RA's incredible power to cripple and disable, in the blatant

ways already mentioned, you need to know that RA can and does kill people.

Statistically, those with RA have shorter lifespans than those without. RA is

systemic and progressive. It's considered a life-threatening disease. It can

also

affect your sight, hearing, heart and lung function. It can attack any body

organ. RA, left untreated, can consume a body...a life...it can put you in a

place where taking care of your children is the last thing on your mind. Life

becomes all about just surviving another day.

Joint replacements help some people...even a lot of people...but, not all

people. Many are given a new lease on life. Many don't get such a great fix,

as nothing works better in our bodies than our own original parts. Sometimes, a

joint is so devastated by damage that it's irreplaceable. Sometimes, a joint

that needs fixing isn't one that medical science is yet able to fix. Sometimes

you can't find a surgeon willing to do replacements on young people. Some

make you wait, because joints can only handle so many replacements in a lifetime

and replacements need to be redone over time. A young person may max out on

the number of replacements one joint can handle before they've reached old age.

Then, they're left with no fix. Sometimes, even with a successful replacement,

you've spent so many years compensating for a bad joint, that another body

part's been severely affected and causes equally as much pain as the replaced

joint did. Spines, particularly, can be horribly affected by bad knees, ankles

and hips. There are no easy or quick fixes for damaged spines. Surgeries are

risky and outcomes are often uncertain. Spinal pain (the nerve center of our

bodies) is often horrific and unrelenting. Because of my own over-compensating

for bad joints, my spine is badly damaged. My rib cage is mostly fused from

over-compensating for the bad spine and my lung capacity has been affected.

Sooooo, I'm getting down off that soapbox now and sorry for the rant. I

just can't stand the thought of another person, in this day and age, having to

suffer the way I did (and do) because they're afraid of the treatments. RA

should be feared and respected. It needs to be treated quickly and aggressively

in

order to live a long, full, happy and healthy life. We are so very fortunate

to live in a time when excellent treatments are available. God speed to you!

Patty/NJ

[Guest guest]

In a message dated 6/28/2005 2:14:38 PM Eastern Daylight Time,

saralaughs02@... writes:

I'd rather deal with the pain and surgeries from joint replacements. At

least with those, I know I'll survive. I'm just not sure about the side effects

and how

often they REALLY occur in life, kwim? They can say " rare " or 2% chance, but

what is that in real terms?

I don't have the stats handy, but, RA isn't just about pain and and

solving that pain with joint replacements. If you want to live a long, healthy,

productive life...if you want to continue taking care of your children, you need

to know that. I don't want to scare you. But, it's important you're aware of

the facts. You need to know what may happen if you let your disease go unchecked

and untreated. I'm not saying these things will happen to you. I'm just

passing on some of the many, very real consequences of untreated RA for your

consideration. You need to understand this disease before you make a firm

decision

against medication.

Most people with untreated RA will not have anything close to a 'normal'

life. Most will shorten their lives considerably. The 'side-effects' of this

disease are far more horrific and life-altering/threatening than any of the

medications that are thankfully available to slow down the disease process. The

side-effects of this disease, unchecked, kill far more people than the truly

'rare' side-effects of the drugs. That's proven medical fact.

Unfortunately, I learned these facts firsthand. I, too, chose not to treat

my disease when it began 22 years ago. I was 25 years old and fearless. I was

going to be the one to beat this without those nasty, scary old drugs. For

awhile, I thought I was beating it. I had a few short remissions, where it was

easy to believe the diagnosis was a mistake. I had 4 pregnancies that also

allowed for 4 longer term remissions. I 'knew' I had licked this disease until

the

end of my 4th pregnancy. While pretending I was fine and denying the

seriousness of my disease...it marched on. It slowly and surely, devastated my

body,

even when I was feeling well. Silently, sneakily, it stayed with me until one

day it reared it's ugly head out of nowhere.

Almost overnight, I became totally incapacitated. The pain so bad, it made

me vomit. Couldn't sleep. Couldn't turn over in bed. Couldn't get to the

bathroom by myself or take care of personal hygiene. Couldn't shave my legs or

put

on makeup. Couldn't tie my shoes or zipper my pants. Couldn't shower by

myself, or wash or comb my hair. Couldn't cut my food or feed myself, which

didn't

matter, because my jaws were so painful, I couldn't eat anyway. Couldn't push

a vacuum, much less pick up a dust rag. Couldn't walk or drive. Couldn't even

hold my babies, much less take care of them. Basically, I couldn't do anything

except feel sad and hate myself for living in denial for too long. When I

finally sought treatment, far too much damage had been done for most of it to be

fixed. The disabilities and deformities are permanent. Luckily, some great

drugs brought some semblance of control back to my life. I'm able to take care

of

myself, my children, husband and home again. But, unless some miracle

happens, I won't ever again live a day without pain in this lifetime.

One of my 'missions' in this life is to make sure that newly dx'd RA

patients know what can happen to them if they don't take care of themselves.

It's

really, really important to know the facts in the earliest stages. And, if

anyone sadly has to be dx'd with RA, this is an excellent time in medical

history.

There are some amazing treatments available that weren't available 20+ years

ago.These drugs can stop the disease in it's tracks. Many people who these

drugs work for will never, ever have to know, the very real, horrific and

life-altering things that RA can do to a body.

Along with RA's incredible power to cripple and disable, in the blatant

ways already mentioned, you need to know that RA can and does kill people.

Statistically, those with RA have shorter lifespans than those without. RA is

systemic and progressive. It's considered a life-threatening disease. It can

also

affect your sight, hearing, heart and lung function. It can attack any body

organ. RA, left untreated, can consume a body...a life...it can put you in a

place where taking care of your children is the last thing on your mind. Life

becomes all about just surviving another day.

Joint replacements help some people...even a lot of people...but, not all

people. Many are given a new lease on life. Many don't get such a great fix,

as nothing works better in our bodies than our own original parts. Sometimes, a

joint is so devastated by damage that it's irreplaceable. Sometimes, a joint

that needs fixing isn't one that medical science is yet able to fix. Sometimes

you can't find a surgeon willing to do replacements on young people. Some

make you wait, because joints can only handle so many replacements in a lifetime

and replacements need to be redone over time. A young person may max out on

the number of replacements one joint can handle before they've reached old age.

Then, they're left with no fix. Sometimes, even with a successful replacement,

you've spent so many years compensating for a bad joint, that another body

part's been severely affected and causes equally as much pain as the replaced

joint did. Spines, particularly, can be horribly affected by bad knees, ankles

and hips. There are no easy or quick fixes for damaged spines. Surgeries are

risky and outcomes are often uncertain. Spinal pain (the nerve center of our

bodies) is often horrific and unrelenting. Because of my own over-compensating

for bad joints, my spine is badly damaged. My rib cage is mostly fused from

over-compensating for the bad spine and my lung capacity has been affected.

Sooooo, I'm getting down off that soapbox now and sorry for the rant. I

just can't stand the thought of another person, in this day and age, having to

suffer the way I did (and do) because they're afraid of the treatments. RA

should be feared and respected. It needs to be treated quickly and aggressively

in

order to live a long, full, happy and healthy life. We are so very fortunate

to live in a time when excellent treatments are available. God speed to you!

Patty/NJ

[Guest guest]

Thank you for taking the time to answer these questions. As I've

mentioned, lymphoma from certain drugs? I'd rather deal with the

pain and surgeries from joint replacements. At least with those, I

know I'll survive. I'm just not sure about the side effects and how

often they REALLY occur in life, kwim? They can say " rare " or 2%

chance, but what is that in real terms? You just don't know until

you become a statistic. I have to figure out what that " rare " chance

means to me. I have 4 kids, all under 10yo, it's something that I

have to weigh seriously. Very scary.

Thanks again!!

Sara

> > Here are my questions:

> > How long and how progressed is your RA?

>

> Diagnosed 17 months ago. Aware of a connective tissue problem (had

> lab tests and visits with a rheumy for about 6 years)

>

> > What drug are you on? It is injectible?

>

> plaquenil, celebrex, methotrexate, folic acid. (Am also currently

> trying two Chinese medicine remedies under the guidance of my

> acupuncturist.)

>

> > What therapies did you try before turning to Rx therapy?

>

> Primarily nutritional and acupuncture

>

> > How long did it take for RA to progress to get you to try Rx

> therapy?

>

> As soon as I was diagnosed, I started disease modifying anti-

> rheumatic drugs.

>

> > What side effects have you had?

>

> Though Plquenil is supposed the be the mildest of the DMARDs, I had

a

> number of odd effects from it at first...excessive thirst, slowed

> thinking, etc. They all went away in time. No side effects from the

> celebrex. Methotrexate was a scary thing to read about and consider

> taking, but it has helped me tremendously, and the only side

effects

> I've had have been next-day tiredness. All of my lab tests have

been

> completely normal. Never had any nausea, though I was on the

highest

> oral dose for awhile.

>

> > If you work on your feet or using your hands, how do you deal

with

> the

> > pain both during and after? (Sometimes I can barely stand long

> enough

> > to cook my family's meals, as it hurts clear down through my

shins

> and

> > joints.)

>

> Ice, elevation, hot rice bags, balms, self massage.

> >

> > Thank you in advance for anything you have to offer.

> >

> > Sara

>

> Good luck, Sara!

[Guest guest]

Thank you for taking the time to answer these questions. As I've

mentioned, lymphoma from certain drugs? I'd rather deal with the

pain and surgeries from joint replacements. At least with those, I

know I'll survive. I'm just not sure about the side effects and how

often they REALLY occur in life, kwim? They can say " rare " or 2%

chance, but what is that in real terms? You just don't know until

you become a statistic. I have to figure out what that " rare " chance

means to me. I have 4 kids, all under 10yo, it's something that I

have to weigh seriously. Very scary.

Thanks again!!

Sara

> > Here are my questions:

> > How long and how progressed is your RA?

>

> Diagnosed 17 months ago. Aware of a connective tissue problem (had

> lab tests and visits with a rheumy for about 6 years)

>

> > What drug are you on? It is injectible?

>

> plaquenil, celebrex, methotrexate, folic acid. (Am also currently

> trying two Chinese medicine remedies under the guidance of my

> acupuncturist.)

>

> > What therapies did you try before turning to Rx therapy?

>

> Primarily nutritional and acupuncture

>

> > How long did it take for RA to progress to get you to try Rx

> therapy?

>

> As soon as I was diagnosed, I started disease modifying anti-

> rheumatic drugs.

>

> > What side effects have you had?

>

> Though Plquenil is supposed the be the mildest of the DMARDs, I had

a

> number of odd effects from it at first...excessive thirst, slowed

> thinking, etc. They all went away in time. No side effects from the

> celebrex. Methotrexate was a scary thing to read about and consider

> taking, but it has helped me tremendously, and the only side

effects

> I've had have been next-day tiredness. All of my lab tests have

been

> completely normal. Never had any nausea, though I was on the

highest

> oral dose for awhile.

>

> > If you work on your feet or using your hands, how do you deal

with

> the

> > pain both during and after? (Sometimes I can barely stand long

> enough

> > to cook my family's meals, as it hurts clear down through my

shins

> and

> > joints.)

>

> Ice, elevation, hot rice bags, balms, self massage.

> >

> > Thank you in advance for anything you have to offer.

> >

> > Sara

>

> Good luck, Sara!

[Guest guest]

As I read this, I thought I'd share with you the other side. I'm far

more upset now that I'm in the surgery phase of the disease than I

ever was before and it has affected me mentally and physically more

than ever before with all the surgeries I'm having. Any medical

decision, drugs, no drugs or surgery is a matter of weighing risks

and benefits...I venture to say that for 90% of us, the benefit of

quality of life is worth the risk of many of the medications.

....I have had this disease for 15 years...I'm 31. I am at the point

of all the surgeries because the RA wasn't optimally treated until

last year when they added Methotrexate, from which I'm lucky and can

say I've not had a single side effect.

Methotrexate 25mg once a week made a lot of difference for me and my

quality of life. When not all the aches and pains cleared up,

further investigation showed lots of damage to my joints...so from

there, I'm in surgery mode. I've had 4 back surgeries (nearly died

from meningitis), just had the 1st of 4-5 surgeries on my wrists (a

joint that can't be effectively replaced and trust me, I can barely

pick up my 12 lb dog, I don't know how I could cook, clean, pick up

4 kids with the wrists I've got) and need foot surgery. All of these

have forced me to take long periods of time off work and the stress

is incredible during the surgeries. It isn't easy to deal with the

acute pain and recovery from multiple surgeries. each one wears me

down more. Sometimes the surgeries don't work either.

I'm in no way saying you're making the wrong decision by not taking

the meds...but I don't think you've got the right idea about the

surgery aspect either. Whatever decision you make, just make sure it

is informed...you can always stop the drugs if you have problems or

if the benefit isn't worth the risk to you.

Good luck,

Lexi

> > > Here are my questions:

> > > How long and how progressed is your RA?

> >

> > Diagnosed 17 months ago. Aware of a connective tissue problem

(had

> > lab tests and visits with a rheumy for about 6 years)

> >

> > > What drug are you on? It is injectible?

> >

> > plaquenil, celebrex, methotrexate, folic acid. (Am also currently

> > trying two Chinese medicine remedies under the guidance of my

> > acupuncturist.)

> >

> > > What therapies did you try before turning to Rx therapy?

> >

> > Primarily nutritional and acupuncture

> >

> > > How long did it take for RA to progress to get you to try Rx

> > therapy?

> >

> > As soon as I was diagnosed, I started disease modifying anti-

> > rheumatic drugs.

> >

> > > What side effects have you had?

> >

> > Though Plquenil is supposed the be the mildest of the DMARDs, I

had

> a

> > number of odd effects from it at first...excessive thirst, slowed

> > thinking, etc. They all went away in time. No side effects from

the

> > celebrex. Methotrexate was a scary thing to read about and

consider

> > taking, but it has helped me tremendously, and the only side

> effects

> > I've had have been next-day tiredness. All of my lab tests have

> been

> > completely normal. Never had any nausea, though I was on the

> highest

> > oral dose for awhile.

> >

> > > If you work on your feet or using your hands, how do you deal

> with

> > the

> > > pain both during and after? (Sometimes I can barely stand long

> > enough

> > > to cook my family's meals, as it hurts clear down through my

> shins

> > and

> > > joints.)

> >

> > Ice, elevation, hot rice bags, balms, self massage.

> > >

> > > Thank you in advance for anything you have to offer.

> > >

> > > Sara

> >

> > Good luck, Sara!

[Guest guest]

As I read this, I thought I'd share with you the other side. I'm far

more upset now that I'm in the surgery phase of the disease than I

ever was before and it has affected me mentally and physically more

than ever before with all the surgeries I'm having. Any medical

decision, drugs, no drugs or surgery is a matter of weighing risks

and benefits...I venture to say that for 90% of us, the benefit of

quality of life is worth the risk of many of the medications.

....I have had this disease for 15 years...I'm 31. I am at the point

of all the surgeries because the RA wasn't optimally treated until

last year when they added Methotrexate, from which I'm lucky and can

say I've not had a single side effect.

Methotrexate 25mg once a week made a lot of difference for me and my

quality of life. When not all the aches and pains cleared up,

further investigation showed lots of damage to my joints...so from

there, I'm in surgery mode. I've had 4 back surgeries (nearly died

from meningitis), just had the 1st of 4-5 surgeries on my wrists (a

joint that can't be effectively replaced and trust me, I can barely

pick up my 12 lb dog, I don't know how I could cook, clean, pick up

4 kids with the wrists I've got) and need foot surgery. All of these

have forced me to take long periods of time off work and the stress

is incredible during the surgeries. It isn't easy to deal with the

acute pain and recovery from multiple surgeries. each one wears me

down more. Sometimes the surgeries don't work either.

I'm in no way saying you're making the wrong decision by not taking

the meds...but I don't think you've got the right idea about the

surgery aspect either. Whatever decision you make, just make sure it

is informed...you can always stop the drugs if you have problems or

if the benefit isn't worth the risk to you.

Good luck,

Lexi

> > > Here are my questions:

> > > How long and how progressed is your RA?

> >

> > Diagnosed 17 months ago. Aware of a connective tissue problem

(had

> > lab tests and visits with a rheumy for about 6 years)

> >

> > > What drug are you on? It is injectible?

> >

> > plaquenil, celebrex, methotrexate, folic acid. (Am also currently

> > trying two Chinese medicine remedies under the guidance of my

> > acupuncturist.)

> >

> > > What therapies did you try before turning to Rx therapy?

> >

> > Primarily nutritional and acupuncture

> >

> > > How long did it take for RA to progress to get you to try Rx

> > therapy?

> >

> > As soon as I was diagnosed, I started disease modifying anti-

> > rheumatic drugs.

> >

> > > What side effects have you had?

> >

> > Though Plquenil is supposed the be the mildest of the DMARDs, I

had

> a

> > number of odd effects from it at first...excessive thirst, slowed

> > thinking, etc. They all went away in time. No side effects from

the

> > celebrex. Methotrexate was a scary thing to read about and

consider

> > taking, but it has helped me tremendously, and the only side

> effects

> > I've had have been next-day tiredness. All of my lab tests have

> been

> > completely normal. Never had any nausea, though I was on the

> highest

> > oral dose for awhile.

> >

> > > If you work on your feet or using your hands, how do you deal

> with

> > the

> > > pain both during and after? (Sometimes I can barely stand long

> > enough

> > > to cook my family's meals, as it hurts clear down through my

> shins

> > and

> > > joints.)

> >

> > Ice, elevation, hot rice bags, balms, self massage.

> > >

> > > Thank you in advance for anything you have to offer.

> > >

> > > Sara

> >

> > Good luck, Sara!

[Guest guest]

Thanks for the insight, Lexi. You know, you say you've had the

disease for 15yrs. I forget when I say I started to have bad

symptoms but I'll tell you this. When I was about 9yo, I would wake

up at night screaming in pain. They could never find out what was

wrong. When I was a teenager, I remember having the inate ability to

predict the rain, a " skill " that's only become more reliable for

anywhere b/t 24-36hrs before the rain falls. Today, we're expecting

thunder showers in our area, though maybe not directly on US, but

around us. I can barely make it up the steps. Sometimes, I feel

like I'm standing on crushed shins. The pain is unbearable at

times. I got the name of a pretty good doc a few years ago, but I

have no child care so I can go see him. There is no doctor appts for

me, as there is no one to watch the kids for me during the day. So,

I have to suffer until my husband takes a vacation day. Problem is

that I never know when they will be. And next wk he has 3 days off

but it's for his own knee surgery. (Not arthritis related) I guess

what I'm trying to say is that I really have no idea how long I've

had the disease, only that it got really bag in my early 20's, with

breaks while I was pg with the kids. I'm now 30 and I think the knee

damage could be pretty bad. But I won't know until I find a way to

go to the Rheumo doc.

I really appreciate your perspective. Thank you very much.

Sara

> > > > Here are my questions:

> > > > How long and how progressed is your RA?

> > >

> > > Diagnosed 17 months ago. Aware of a connective tissue problem

> (had

> > > lab tests and visits with a rheumy for about 6 years)

> > >

> > > > What drug are you on? It is injectible?

> > >

> > > plaquenil, celebrex, methotrexate, folic acid. (Am also

currently

> > > trying two Chinese medicine remedies under the guidance of my

> > > acupuncturist.)

> > >

> > > > What therapies did you try before turning to Rx therapy?

> > >

> > > Primarily nutritional and acupuncture

> > >

> > > > How long did it take for RA to progress to get you to try Rx

> > > therapy?

> > >

> > > As soon as I was diagnosed, I started disease modifying anti-

> > > rheumatic drugs.

> > >

> > > > What side effects have you had?

> > >

> > > Though Plquenil is supposed the be the mildest of the DMARDs, I

> had

> > a

> > > number of odd effects from it at first...excessive thirst,

slowed

> > > thinking, etc. They all went away in time. No side effects from

> the

> > > celebrex. Methotrexate was a scary thing to read about and

> consider

> > > taking, but it has helped me tremendously, and the only side

> > effects

> > > I've had have been next-day tiredness. All of my lab tests have

> > been

> > > completely normal. Never had any nausea, though I was on the

> > highest

> > > oral dose for awhile.

> > >

> > > > If you work on your feet or using your hands, how do you deal

> > with

> > > the

> > > > pain both during and after? (Sometimes I can barely stand

long

> > > enough

> > > > to cook my family's meals, as it hurts clear down through my

> > shins

> > > and

> > > > joints.)

> > >

> > > Ice, elevation, hot rice bags, balms, self massage.

> > > >

> > > > Thank you in advance for anything you have to offer.

> > > >

> > > > Sara

> > >

> > > Good luck, Sara!

[Guest guest]

Thanks for the insight, Lexi. You know, you say you've had the

disease for 15yrs. I forget when I say I started to have bad

symptoms but I'll tell you this. When I was about 9yo, I would wake

up at night screaming in pain. They could never find out what was

wrong. When I was a teenager, I remember having the inate ability to

predict the rain, a " skill " that's only become more reliable for

anywhere b/t 24-36hrs before the rain falls. Today, we're expecting

thunder showers in our area, though maybe not directly on US, but

around us. I can barely make it up the steps. Sometimes, I feel

like I'm standing on crushed shins. The pain is unbearable at

times. I got the name of a pretty good doc a few years ago, but I

have no child care so I can go see him. There is no doctor appts for

me, as there is no one to watch the kids for me during the day. So,

I have to suffer until my husband takes a vacation day. Problem is

that I never know when they will be. And next wk he has 3 days off

but it's for his own knee surgery. (Not arthritis related) I guess

what I'm trying to say is that I really have no idea how long I've

had the disease, only that it got really bag in my early 20's, with

breaks while I was pg with the kids. I'm now 30 and I think the knee

damage could be pretty bad. But I won't know until I find a way to

go to the Rheumo doc.

I really appreciate your perspective. Thank you very much.

Sara

> > > > Here are my questions:

> > > > How long and how progressed is your RA?

> > >

> > > Diagnosed 17 months ago. Aware of a connective tissue problem

> (had

> > > lab tests and visits with a rheumy for about 6 years)

> > >

> > > > What drug are you on? It is injectible?

> > >

> > > plaquenil, celebrex, methotrexate, folic acid. (Am also

currently

> > > trying two Chinese medicine remedies under the guidance of my

> > > acupuncturist.)

> > >

> > > > What therapies did you try before turning to Rx therapy?

> > >

> > > Primarily nutritional and acupuncture

> > >

> > > > How long did it take for RA to progress to get you to try Rx

> > > therapy?

> > >

> > > As soon as I was diagnosed, I started disease modifying anti-

> > > rheumatic drugs.

> > >

> > > > What side effects have you had?

> > >

> > > Though Plquenil is supposed the be the mildest of the DMARDs, I

> had

> > a

> > > number of odd effects from it at first...excessive thirst,

slowed

> > > thinking, etc. They all went away in time. No side effects from

> the

> > > celebrex. Methotrexate was a scary thing to read about and

> consider

> > > taking, but it has helped me tremendously, and the only side

> > effects

> > > I've had have been next-day tiredness. All of my lab tests have

> > been

> > > completely normal. Never had any nausea, though I was on the

> > highest

> > > oral dose for awhile.

> > >

> > > > If you work on your feet or using your hands, how do you deal

> > with

> > > the

> > > > pain both during and after? (Sometimes I can barely stand

long

> > > enough

> > > > to cook my family's meals, as it hurts clear down through my

> > shins

> > > and

> > > > joints.)

> > >

> > > Ice, elevation, hot rice bags, balms, self massage.

> > > >

> > > > Thank you in advance for anything you have to offer.

> > > >

> > > > Sara

> > >

> > > Good luck, Sara!

[Guest guest]

What a powerful post, Patty. Thank you very much for your story. I

will keep this one on file to refer to.

It's not so much that I'm unwilling to take meds at all, I just want

to be very selective in the ones w/ things like lymphoma as a side

effect. I'm just not ready to deal w/ something like cancer on top

of RA.

As I mentioned in another reply to someone else, it's a matter of

getting to the doctor. I don't have child care and taking 4 kids w/

me is certainly not going to be a productive appt. My DH has a few

days off in 2 wks but it's for his own knee surgery. I can't leave

him w/ 4 kids when he's just had surgery. (Even though he did it to

me after a c-section. So, in some ways I'd feel justified, though

that's a whole other story.)

Thank you very much for taking the time to give me your insight. I

think I'll also print it out for my DH to read. Maybe he'll start

taking this Dx seriously.

Sara

> In a message dated 6/28/2005 2:14:38 PM Eastern Daylight Time,

> saralaughs02@y... writes:

> I'd rather deal with the pain and surgeries from joint

replacements. At

> least with those, I know I'll survive. I'm just not sure about the

side effects

> and how

> often they REALLY occur in life, kwim? They can say " rare " or 2%

chance, but

> what is that in real terms?

>

> I don't have the stats handy, but, RA isn't just about pain and

and

> solving that pain with joint replacements. If you want to live a

long, healthy,

> productive life...if you want to continue taking care of your

children, you need

> to know that. I don't want to scare you. But, it's important you're

aware of

> the facts. You need to know what may happen if you let your disease

go unchecked

> and untreated. I'm not saying these things will happen to you. I'm

just

> passing on some of the many, very real consequences of untreated RA

for your

> consideration. You need to understand this disease before you make

a firm decision

> against medication.

> Most people with untreated RA will not have anything close to

a 'normal'

> life. Most will shorten their lives considerably. The 'side-

effects' of this

> disease are far more horrific and life-altering/threatening than

any of the

> medications that are thankfully available to slow down the disease

process. The

> side-effects of this disease, unchecked, kill far more people than

the truly

> 'rare' side-effects of the drugs. That's proven medical fact.

> Unfortunately, I learned these facts firsthand. I, too, chose

not to treat

> my disease when it began 22 years ago. I was 25 years old and

fearless. I was

> going to be the one to beat this without those nasty, scary old

drugs. For

> awhile, I thought I was beating it. I had a few short remissions,

where it was

> easy to believe the diagnosis was a mistake. I had 4 pregnancies

that also

> allowed for 4 longer term remissions. I 'knew' I had licked this

disease until the

> end of my 4th pregnancy. While pretending I was fine and denying

the

> seriousness of my disease...it marched on. It slowly and surely,

devastated my body,

> even when I was feeling well. Silently, sneakily, it stayed with me

until one

> day it reared it's ugly head out of nowhere.

> Almost overnight, I became totally incapacitated. The pain so

bad, it made

> me vomit. Couldn't sleep. Couldn't turn over in bed. Couldn't get

to the

> bathroom by myself or take care of personal hygiene. Couldn't shave

my legs or put

> on makeup. Couldn't tie my shoes or zipper my pants. Couldn't

shower by

> myself, or wash or comb my hair. Couldn't cut my food or feed

myself, which didn't

> matter, because my jaws were so painful, I couldn't eat anyway.

Couldn't push

> a vacuum, much less pick up a dust rag. Couldn't walk or drive.

Couldn't even

> hold my babies, much less take care of them. Basically, I couldn't

do anything

> except feel sad and hate myself for living in denial for too long.

When I

> finally sought treatment, far too much damage had been done for

most of it to be

> fixed. The disabilities and deformities are permanent. Luckily,

some great

> drugs brought some semblance of control back to my life. I'm able

to take care of

> myself, my children, husband and home again. But, unless some

miracle

> happens, I won't ever again live a day without pain in this

lifetime.

> One of my 'missions' in this life is to make sure that newly

dx'd RA

> patients know what can happen to them if they don't take care of

themselves. It's

> really, really important to know the facts in the earliest stages.

And, if

> anyone sadly has to be dx'd with RA, this is an excellent time in

medical history.

> There are some amazing treatments available that weren't available

20+ years

> ago.These drugs can stop the disease in it's tracks. Many people

who these

> drugs work for will never, ever have to know, the very real,

horrific and

> life-altering things that RA can do to a body.

> Along with RA's incredible power to cripple and disable, in the

blatant

> ways already mentioned, you need to know that RA can and does kill

people.

> Statistically, those with RA have shorter lifespans than those

without. RA is

> systemic and progressive. It's considered a life-threatening

disease. It can also

> affect your sight, hearing, heart and lung function. It can attack

any body

> organ. RA, left untreated, can consume a body...a life...it can put

you in a

> place where taking care of your children is the last thing on your

mind. Life

> becomes all about just surviving another day.

> Joint replacements help some people...even a lot of

people...but, not all

> people. Many are given a new lease on life. Many don't get such a

great fix,

> as nothing works better in our bodies than our own original parts.

Sometimes, a

> joint is so devastated by damage that it's irreplaceable.

Sometimes, a joint

> that needs fixing isn't one that medical science is yet able to

fix. Sometimes

> you can't find a surgeon willing to do replacements on young

people. Some

> make you wait, because joints can only handle so many replacements

in a lifetime

> and replacements need to be redone over time. A young person may

max out on

> the number of replacements one joint can handle before they've

reached old age.

> Then, they're left with no fix. Sometimes, even with a successful

replacement,

> you've spent so many years compensating for a bad joint, that

another body

> part's been severely affected and causes equally as much pain as

the replaced

> joint did. Spines, particularly, can be horribly affected by bad

knees, ankles

> and hips. There are no easy or quick fixes for damaged spines.

Surgeries are

> risky and outcomes are often uncertain. Spinal pain (the nerve

center of our

> bodies) is often horrific and unrelenting. Because of my own over-

compensating

> for bad joints, my spine is badly damaged. My rib cage is mostly

fused from

> over-compensating for the bad spine and my lung capacity has been

affected.

> Sooooo, I'm getting down off that soapbox now and sorry for the

rant. I

> just can't stand the thought of another person, in this day and

age, having to

> suffer the way I did (and do) because they're afraid of the

treatments. RA

> should be feared and respected. It needs to be treated quickly and

aggressively in

> order to live a long, full, happy and healthy life. We are so very

fortunate

> to live in a time when excellent treatments are available. God

speed to you!

> Patty/NJ

>

>

>

[Guest guest]

What a powerful post, Patty. Thank you very much for your story. I

will keep this one on file to refer to.

It's not so much that I'm unwilling to take meds at all, I just want

to be very selective in the ones w/ things like lymphoma as a side

effect. I'm just not ready to deal w/ something like cancer on top

of RA.

As I mentioned in another reply to someone else, it's a matter of

getting to the doctor. I don't have child care and taking 4 kids w/

me is certainly not going to be a productive appt. My DH has a few

days off in 2 wks but it's for his own knee surgery. I can't leave

him w/ 4 kids when he's just had surgery. (Even though he did it to

me after a c-section. So, in some ways I'd feel justified, though

that's a whole other story.)

Thank you very much for taking the time to give me your insight. I

think I'll also print it out for my DH to read. Maybe he'll start

taking this Dx seriously.

Sara

> In a message dated 6/28/2005 2:14:38 PM Eastern Daylight Time,

> saralaughs02@y... writes:

> I'd rather deal with the pain and surgeries from joint

replacements. At

> least with those, I know I'll survive. I'm just not sure about the

side effects

> and how

> often they REALLY occur in life, kwim? They can say " rare " or 2%

chance, but

> what is that in real terms?

>

> I don't have the stats handy, but, RA isn't just about pain and

and

> solving that pain with joint replacements. If you want to live a

long, healthy,

> productive life...if you want to continue taking care of your

children, you need

> to know that. I don't want to scare you. But, it's important you're

aware of

> the facts. You need to know what may happen if you let your disease

go unchecked

> and untreated. I'm not saying these things will happen to you. I'm

just

> passing on some of the many, very real consequences of untreated RA

for your

> consideration. You need to understand this disease before you make

a firm decision

> against medication.

> Most people with untreated RA will not have anything close to

a 'normal'

> life. Most will shorten their lives considerably. The 'side-

effects' of this

> disease are far more horrific and life-altering/threatening than

any of the

> medications that are thankfully available to slow down the disease

process. The

> side-effects of this disease, unchecked, kill far more people than

the truly

> 'rare' side-effects of the drugs. That's proven medical fact.

> Unfortunately, I learned these facts firsthand. I, too, chose

not to treat

> my disease when it began 22 years ago. I was 25 years old and

fearless. I was

> going to be the one to beat this without those nasty, scary old

drugs. For

> awhile, I thought I was beating it. I had a few short remissions,

where it was

> easy to believe the diagnosis was a mistake. I had 4 pregnancies

that also

> allowed for 4 longer term remissions. I 'knew' I had licked this

disease until the

> end of my 4th pregnancy. While pretending I was fine and denying

the

> seriousness of my disease...it marched on. It slowly and surely,

devastated my body,

> even when I was feeling well. Silently, sneakily, it stayed with me

until one

> day it reared it's ugly head out of nowhere.

> Almost overnight, I became totally incapacitated. The pain so

bad, it made

> me vomit. Couldn't sleep. Couldn't turn over in bed. Couldn't get

to the

> bathroom by myself or take care of personal hygiene. Couldn't shave

my legs or put

> on makeup. Couldn't tie my shoes or zipper my pants. Couldn't

shower by

> myself, or wash or comb my hair. Couldn't cut my food or feed

myself, which didn't

> matter, because my jaws were so painful, I couldn't eat anyway.

Couldn't push

> a vacuum, much less pick up a dust rag. Couldn't walk or drive.

Couldn't even

> hold my babies, much less take care of them. Basically, I couldn't

do anything

> except feel sad and hate myself for living in denial for too long.

When I

> finally sought treatment, far too much damage had been done for

most of it to be

> fixed. The disabilities and deformities are permanent. Luckily,

some great

> drugs brought some semblance of control back to my life. I'm able

to take care of

> myself, my children, husband and home again. But, unless some

miracle

> happens, I won't ever again live a day without pain in this

lifetime.

> One of my 'missions' in this life is to make sure that newly

dx'd RA

> patients know what can happen to them if they don't take care of

themselves. It's

> really, really important to know the facts in the earliest stages.

And, if

> anyone sadly has to be dx'd with RA, this is an excellent time in

medical history.

> There are some amazing treatments available that weren't available

20+ years

> ago.These drugs can stop the disease in it's tracks. Many people

who these

> drugs work for will never, ever have to know, the very real,

horrific and

> life-altering things that RA can do to a body.

> Along with RA's incredible power to cripple and disable, in the

blatant

> ways already mentioned, you need to know that RA can and does kill

people.

> Statistically, those with RA have shorter lifespans than those

without. RA is

> systemic and progressive. It's considered a life-threatening

disease. It can also

> affect your sight, hearing, heart and lung function. It can attack

any body

> organ. RA, left untreated, can consume a body...a life...it can put

you in a

> place where taking care of your children is the last thing on your

mind. Life

> becomes all about just surviving another day.

> Joint replacements help some people...even a lot of

people...but, not all

> people. Many are given a new lease on life. Many don't get such a

great fix,

> as nothing works better in our bodies than our own original parts.

Sometimes, a

> joint is so devastated by damage that it's irreplaceable.

Sometimes, a joint

> that needs fixing isn't one that medical science is yet able to

fix. Sometimes

> you can't find a surgeon willing to do replacements on young

people. Some

> make you wait, because joints can only handle so many replacements

in a lifetime

> and replacements need to be redone over time. A young person may

max out on

> the number of replacements one joint can handle before they've

reached old age.

> Then, they're left with no fix. Sometimes, even with a successful

replacement,

> you've spent so many years compensating for a bad joint, that

another body

> part's been severely affected and causes equally as much pain as

the replaced

> joint did. Spines, particularly, can be horribly affected by bad

knees, ankles

> and hips. There are no easy or quick fixes for damaged spines.

Surgeries are

> risky and outcomes are often uncertain. Spinal pain (the nerve

center of our

> bodies) is often horrific and unrelenting. Because of my own over-

compensating

> for bad joints, my spine is badly damaged. My rib cage is mostly

fused from

> over-compensating for the bad spine and my lung capacity has been

affected.

> Sooooo, I'm getting down off that soapbox now and sorry for the

rant. I

> just can't stand the thought of another person, in this day and

age, having to

> suffer the way I did (and do) because they're afraid of the

treatments. RA

> should be feared and respected. It needs to be treated quickly and

aggressively in

> order to live a long, full, happy and healthy life. We are so very

fortunate

> to live in a time when excellent treatments are available. God

speed to you!

> Patty/NJ

>

>

>

[Guest guest]

Hi Sara:

Your post was terrific - excellent for those with new

RA dx - and even for those of us who have been dx for

longer. Sometimes, I too, try to deny I have the

disease and have stopped taking my meds, only to have

it come back to kick me in the butt, letting me know

that, yes indeedy, I do have RA and I need those darn

meds.

My grandmother had RA and was in a wheelchair at the

end, her hands were deformed, she had had total knee

replacements, and she was in constant pain. Back in

her day, they only treated when she had pain, and the

rest of the time she just sort of fended for herself,

I guess. The last med I was aware she was on were

gold shots. Like you said, we are very lucky to be dx

in this day and age where there are so many new meds

and advancements being made in understanding and

treating RA - to not take advantage of those new meds

to fight the disease is a crime, a crime against your

own body and your life. The side effects of some are

not pretty, but its so much better than what would be

without them.

When I was around 9 or a little younger, I too began

to have leg pains so bad that I would not be able to

sleep and would wake up crying out in pain. They

lasted several years. My parents would spend hours

just rubbing my legs so that I could get back to

sleep, and the pain would also come during the days,

and they would rub them again to ease the pain. Those

pains, as I remember them, are so very similar to the

way my legs are painful now, from the hips down, just

a steady deep aching pain - makes me wonder. That was

before my grandmother's dx, so I guess they did not

think anything more of it than growing pains. I did go

to a doctor when I was about 12 because of severe knee

pains, and he told my mom I needed to stop drinking so

much milk as I had calcium deposits in my knees and

that was the source of the pain. And I loved my milk

lol. Now I wonder if maybe those leg pains and knee

pains were a hint of what was to come, but I was not

dx until I was 45, six years ago.

Anyway, just wanted to say thank you for putting into

words the reality of RA - yep, it's scary, but with

the right meds we can fight it.

Kathe in CA

--- saralaughs02 <saralaughs02@...> wrote:

> Thanks for the insight, Lexi. You know, you say

> you've had the

> disease for 15yrs. I forget when I say I started to

> have bad

> symptoms but I'll tell you this. When I was about

> 9yo, I would wake

> up at night screaming in pain. They could never

> find out what was

> wrong. When I was a teenager, I remember having the

> inate ability to

> predict the rain, a " skill " that's only become more

> reliable for

> anywhere b/t 24-36hrs before the rain falls. Today,

> we're expecting

> thunder showers in our area, though maybe not

> directly on US, but

> around us. I can barely make it up the steps.

> Sometimes, I feel

> like I'm standing on crushed shins. The pain is

> unbearable at

> times. I got the name of a pretty good doc a few

> years ago, but I

> have no child care so I can go see him. There is no

> doctor appts for

> me, as there is no one to watch the kids for me

> during the day. So,

> I have to suffer until my husband takes a vacation

> day. Problem is

> that I never know when they will be. And next wk he

> has 3 days off

> but it's for his own knee surgery. (Not arthritis

> related) I guess

> what I'm trying to say is that I really have no idea

> how long I've

> had the disease, only that it got really bag in my

> early 20's, with

> breaks while I was pg with the kids. I'm now 30 and

> I think the knee

> damage could be pretty bad. But I won't know until

> I find a way to

> go to the Rheumo doc.

>

> I really appreciate your perspective. Thank you

> very much.

>

> Sara

>

>

> > > > > Here are my questions:

> > > > > How long and how progressed is your RA?

> > > >

> > > > Diagnosed 17 months ago. Aware of a connective

> tissue problem

> > (had

> > > > lab tests and visits with a rheumy for about 6

> years)

> > > >

> > > > > What drug are you on? It is injectible?

> > > >

> > > > plaquenil, celebrex, methotrexate, folic acid.

> (Am also

> currently

> > > > trying two Chinese medicine remedies under the

> guidance of my

> > > > acupuncturist.)

> > > >

> > > > > What therapies did you try before turning to

> Rx therapy?

> > > >

> > > > Primarily nutritional and acupuncture

> > > >

> > > > > How long did it take for RA to progress to

> get you to try Rx

> > > > therapy?

> > > >

> > > > As soon as I was diagnosed, I started disease

> modifying anti-

> > > > rheumatic drugs.

> > > >

> > > > > What side effects have you had?

> > > >

> > > > Though Plquenil is supposed the be the mildest

> of the DMARDs, I

> > had

> > > a

> > > > number of odd effects from it at

> first...excessive thirst,

> slowed

> > > > thinking, etc. They all went away in time. No

> side effects from

> > the

> > > > celebrex. Methotrexate was a scary thing to

> read about and

> > consider

> > > > taking, but it has helped me tremendously, and

> the only side

> > > effects

> > > > I've had have been next-day tiredness. All of

> my lab tests have

> > > been

> > > > completely normal. Never had any nausea,

> though I was on the

> > > highest

> > > > oral dose for awhile.

> > > >

> > > > > If you work on your feet or using your

> hands, how do you deal

> > > with

> > > > the

> > > > > pain both during and after? (Sometimes I

> can barely stand

> long

> > > > enough

> > > > > to cook my family's meals, as it hurts clear

> down through my

> > > shins

> > > > and

> > > > > joints.)

> > > >

> > > > Ice, elevation, hot rice bags, balms, self

> massage.

> > > > >

> > > > > Thank you in advance for anything you have

> to offer.

> > > > >

> > > > > Sara

> > > >

> > > > Good luck, Sara!

>

>

>

>

>

Kathe in CA

__________________________________________________

[Guest guest]

Hi Sara:

Your post was terrific - excellent for those with new

RA dx - and even for those of us who have been dx for

longer. Sometimes, I too, try to deny I have the

disease and have stopped taking my meds, only to have

it come back to kick me in the butt, letting me know

that, yes indeedy, I do have RA and I need those darn

meds.

My grandmother had RA and was in a wheelchair at the

end, her hands were deformed, she had had total knee

replacements, and she was in constant pain. Back in

her day, they only treated when she had pain, and the

rest of the time she just sort of fended for herself,

I guess. The last med I was aware she was on were

gold shots. Like you said, we are very lucky to be dx

in this day and age where there are so many new meds

and advancements being made in understanding and

treating RA - to not take advantage of those new meds

to fight the disease is a crime, a crime against your

own body and your life. The side effects of some are

not pretty, but its so much better than what would be

without them.

When I was around 9 or a little younger, I too began

to have leg pains so bad that I would not be able to

sleep and would wake up crying out in pain. They

lasted several years. My parents would spend hours

just rubbing my legs so that I could get back to

sleep, and the pain would also come during the days,

and they would rub them again to ease the pain. Those

pains, as I remember them, are so very similar to the

way my legs are painful now, from the hips down, just

a steady deep aching pain - makes me wonder. That was

before my grandmother's dx, so I guess they did not

think anything more of it than growing pains. I did go

to a doctor when I was about 12 because of severe knee

pains, and he told my mom I needed to stop drinking so

much milk as I had calcium deposits in my knees and

that was the source of the pain. And I loved my milk

lol. Now I wonder if maybe those leg pains and knee

pains were a hint of what was to come, but I was not

dx until I was 45, six years ago.

Anyway, just wanted to say thank you for putting into

words the reality of RA - yep, it's scary, but with

the right meds we can fight it.

Kathe in CA

--- saralaughs02 <saralaughs02@...> wrote:

> Thanks for the insight, Lexi. You know, you say

> you've had the

> disease for 15yrs. I forget when I say I started to

> have bad

> symptoms but I'll tell you this. When I was about

> 9yo, I would wake

> up at night screaming in pain. They could never

> find out what was

> wrong. When I was a teenager, I remember having the

> inate ability to

> predict the rain, a " skill " that's only become more

> reliable for

> anywhere b/t 24-36hrs before the rain falls. Today,

> we're expecting

> thunder showers in our area, though maybe not

> directly on US, but

> around us. I can barely make it up the steps.

> Sometimes, I feel

> like I'm standing on crushed shins. The pain is

> unbearable at

> times. I got the name of a pretty good doc a few

> years ago, but I

> have no child care so I can go see him. There is no

> doctor appts for

> me, as there is no one to watch the kids for me

> during the day. So,

> I have to suffer until my husband takes a vacation

> day. Problem is

> that I never know when they will be. And next wk he

> has 3 days off

> but it's for his own knee surgery. (Not arthritis

> related) I guess

> what I'm trying to say is that I really have no idea

> how long I've

> had the disease, only that it got really bag in my

> early 20's, with

> breaks while I was pg with the kids. I'm now 30 and

> I think the knee

> damage could be pretty bad. But I won't know until

> I find a way to

> go to the Rheumo doc.

>

> I really appreciate your perspective. Thank you

> very much.

>

> Sara

>

>

> > > > > Here are my questions:

> > > > > How long and how progressed is your RA?

> > > >

> > > > Diagnosed 17 months ago. Aware of a connective

> tissue problem

> > (had

> > > > lab tests and visits with a rheumy for about 6

> years)

> > > >

> > > > > What drug are you on? It is injectible?

> > > >

> > > > plaquenil, celebrex, methotrexate, folic acid.

> (Am also

> currently

> > > > trying two Chinese medicine remedies under the

> guidance of my

> > > > acupuncturist.)

> > > >

> > > > > What therapies did you try before turning to

> Rx therapy?

> > > >

> > > > Primarily nutritional and acupuncture

> > > >

> > > > > How long did it take for RA to progress to

> get you to try Rx

> > > > therapy?

> > > >

> > > > As soon as I was diagnosed, I started disease

> modifying anti-

> > > > rheumatic drugs.

> > > >

> > > > > What side effects have you had?

> > > >

> > > > Though Plquenil is supposed the be the mildest

> of the DMARDs, I

> > had

> > > a

> > > > number of odd effects from it at

> first...excessive thirst,

> slowed

> > > > thinking, etc. They all went away in time. No

> side effects from

> > the

> > > > celebrex. Methotrexate was a scary thing to

> read about and

> > consider

> > > > taking, but it has helped me tremendously, and

> the only side

> > > effects

> > > > I've had have been next-day tiredness. All of

> my lab tests have

> > > been

> > > > completely normal. Never had any nausea,

> though I was on the

> > > highest

> > > > oral dose for awhile.

> > > >

> > > > > If you work on your feet or using your

> hands, how do you deal

> > > with

> > > > the

> > > > > pain both during and after? (Sometimes I

> can barely stand

> long

> > > > enough

> > > > > to cook my family's meals, as it hurts clear

> down through my

> > > shins

> > > > and

> > > > > joints.)

> > > >

> > > > Ice, elevation, hot rice bags, balms, self

> massage.

> > > > >

> > > > > Thank you in advance for anything you have

> to offer.

> > > > >

> > > > > Sara

> > > >

> > > > Good luck, Sara!

>

>

>

>

>

Kathe in CA

__________________________________________________

[Guest guest]

Kathe,

The fact that neither of us was Dx w/ RA...and you figure how many

years ago...I think was directly BC of our age. Even my PCP

said, " The only reason I know it's RA is bc it's some form of

arthritis and you're way too young for osteo-arthritis. " Who thinks

any form of arthritis in such young children.

TG for today's technology.

Sara

> > > > > > Here are my questions:

> > > > > > How long and how progressed is your RA?

> > > > >

> > > > > Diagnosed 17 months ago. Aware of a connective

> > tissue problem

> > > (had

> > > > > lab tests and visits with a rheumy for about 6

> > years)

> > > > >

> > > > > > What drug are you on? It is injectible?

> > > > >

> > > > > plaquenil, celebrex, methotrexate, folic acid.

> > (Am also

> > currently

> > > > > trying two Chinese medicine remedies under the

> > guidance of my

> > > > > acupuncturist.)

> > > > >

> > > > > > What therapies did you try before turning to

> > Rx therapy?

> > > > >

> > > > > Primarily nutritional and acupuncture

> > > > >

> > > > > > How long did it take for RA to progress to

> > get you to try Rx

> > > > > therapy?

> > > > >

> > > > > As soon as I was diagnosed, I started disease

> > modifying anti-

> > > > > rheumatic drugs.

> > > > >

> > > > > > What side effects have you had?

> > > > >

> > > > > Though Plquenil is supposed the be the mildest

> > of the DMARDs, I

> > > had

> > > > a

> > > > > number of odd effects from it at

> > first...excessive thirst,

> > slowed

> > > > > thinking, etc. They all went away in time. No

> > side effects from

> > > the

> > > > > celebrex. Methotrexate was a scary thing to

> > read about and

> > > consider

> > > > > taking, but it has helped me tremendously, and

> > the only side

> > > > effects

> > > > > I've had have been next-day tiredness. All of

> > my lab tests have

> > > > been

> > > > > completely normal. Never had any nausea,

> > though I was on the

> > > > highest

> > > > > oral dose for awhile.

> > > > >

> > > > > > If you work on your feet or using your

> > hands, how do you deal

> > > > with

> > > > > the

> > > > > > pain both during and after? (Sometimes I

> > can barely stand

> > long

> > > > > enough

> > > > > > to cook my family's meals, as it hurts clear

> > down through my

> > > > shins

> > > > > and

> > > > > > joints.)

> > > > >

> > > > > Ice, elevation, hot rice bags, balms, self

> > massage.

> > > > > >

> > > > > > Thank you in advance for anything you have

> > to offer.

> > > > > >

> > > > > > Sara

> > > > >

> > > > > Good luck, Sara!

> >

> >

> >

> >

> >

>

>

>

> Kathe in CA

>

>

> __________________________________________________

>

[Guest guest]

Kathe,

The fact that neither of us was Dx w/ RA...and you figure how many

years ago...I think was directly BC of our age. Even my PCP

said, " The only reason I know it's RA is bc it's some form of

arthritis and you're way too young for osteo-arthritis. " Who thinks

any form of arthritis in such young children.

TG for today's technology.

Sara

> > > > > > Here are my questions:

> > > > > > How long and how progressed is your RA?

> > > > >

> > > > > Diagnosed 17 months ago. Aware of a connective

> > tissue problem

> > > (had

> > > > > lab tests and visits with a rheumy for about 6

> > years)

> > > > >

> > > > > > What drug are you on? It is injectible?

> > > > >

> > > > > plaquenil, celebrex, methotrexate, folic acid.

> > (Am also

> > currently

> > > > > trying two Chinese medicine remedies under the

> > guidance of my

> > > > > acupuncturist.)

> > > > >

> > > > > > What therapies did you try before turning to

> > Rx therapy?

> > > > >

> > > > > Primarily nutritional and acupuncture

> > > > >

> > > > > > How long did it take for RA to progress to

> > get you to try Rx

> > > > > therapy?

> > > > >

> > > > > As soon as I was diagnosed, I started disease

> > modifying anti-

> > > > > rheumatic drugs.

> > > > >

> > > > > > What side effects have you had?

> > > > >

> > > > > Though Plquenil is supposed the be the mildest

> > of the DMARDs, I

> > > had

> > > > a

> > > > > number of odd effects from it at

> > first...excessive thirst,

> > slowed

> > > > > thinking, etc. They all went away in time. No

> > side effects from

> > > the

> > > > > celebrex. Methotrexate was a scary thing to

> > read about and

> > > consider

> > > > > taking, but it has helped me tremendously, and

> > the only side

> > > > effects

> > > > > I've had have been next-day tiredness. All of

> > my lab tests have

> > > > been

> > > > > completely normal. Never had any nausea,

> > though I was on the

> > > > highest

> > > > > oral dose for awhile.

> > > > >

> > > > > > If you work on your feet or using your

> > hands, how do you deal

> > > > with

> > > > > the

> > > > > > pain both during and after? (Sometimes I

> > can barely stand

> > long

> > > > > enough

> > > > > > to cook my family's meals, as it hurts clear

> > down through my

> > > > shins

> > > > > and

> > > > > > joints.)

> > > > >

> > > > > Ice, elevation, hot rice bags, balms, self

> > massage.

> > > > > >

> > > > > > Thank you in advance for anything you have

> > to offer.

> > > > > >

> > > > > > Sara

> > > > >

> > > > > Good luck, Sara!

> >

> >

> >

> >

> >

>

>

>

> Kathe in CA

>

>

> __________________________________________________

>

[Guest guest]

Oh my gosh. It certainly sounds as if you've been through the ringer

on these drugs. These types of things are my fears. My last

pregnancy was one from the pit of h3ll and so I will not be having

any more babies, but from what you describe, it seems the " torture "

of that pg could be carried on through these drugs.

Wow. I just don't even know what to say. Here's to hoping the

Humira does something good for you. I'll be taking this info to the

doc w/ me. Thank you so much.

Sara

>

> Sara,

> I will Answer you questions as you have asked them. But to give

you some

> background info I am 40 yo and was Dx'd 3-4 yrs ago after suffering

for almost

> a year. My symptoms came on gradually and I thought they were all

just from

> stress and over work until my hands were twice there normal size,

numb and of

> no use.

>

> I have since dx had left carpel tunnel release which worked wonders

for the

> first year and is now OK. I have a lot of damage in my hips. My

last x-ray

> should severe arthritic changes in the hip joint and I have bone

spurs

> floating around in the joint. I am waiting to see ortho doc to see

what can be done

> about that. I current have no rheummy as my lat one moved away and

I am

> waiting for appnt with new doc. We only have one doc in my city

and with in a

> nearly 100 mile radius.

>

> I have been on the following drugs in the order I have taken them:

Arava,

> prednisone, MTX(pills and injections) Enbrel, flexeril, Bextra,

Lodine, folic

> acid and leukovorin...there are many other meds I have been on that

are no

> specific to treatment for my RA..and those are prozac, zoloft,

lexapro, ambian,

> sonata, elavil, trazadone, prevacid, nexium, ultram, darvocet and

toradol.

>

> Currently I am on lodine XL and Nexium to protect my stomach from

the

> lodine. I am a sugical weight loss patient( lapband) and as a

general rule any

> medication that can cause ulcers or GI distress is avoid if

possible. These are

> oral medications.

>

> Before and during traditional therapy I was taking evening primrose

oil to

> help with inflammation, valerian root for sleep and fish oil..which

did nothing

> for me. I also take multi-vitamin daily.

>

> I was placed on DMARD treatment immediately with Arava, bextra and

> prednisone. The arava is an oral pill that work well for me for

about a year and

> stopped working. It is not a drug of choice if you are still

planning to have

> more children as it is fetal toxic. There is a way to purge the

drug chemical

> out your system..but it is recommend that you wait 6-12 months

after the last

> does before becoming pregnent. It does require close monitoring

of liver

> and kidney function via bloodwork. I use to go every two weeks.

As this drug

> can do damage if not supervised closely. I had no side effects

from it.

> Bextra was a life saver for me until they took it off the

market..and now I am

> left with nothing I can take. My surgeon even used it for post-op

swelling as

> it was soo easy on the stomach. Prednisone I hated....cause svere

GI

> distress, made me very cranky and I had NO appetite. This was on

doses as small as

> 2.5 mg to 5 mg a day. I finally stopped the prednisone on my

own. My doc

> also required that I take calcium suppliment every day that I was

on prednisone

> because it ruins your bones.

>

> I changed rheummies and the new doc also changed my meds. He felt

the Arava

> was not effective enough and the disease was progressing. So I

started

> Methotrexate pills. It was HORRIBLE!!! I could not work for all

the side

> effects. Constant vomiting, diarrhea, nausea, dizziness,

headache, fatigue and

> weakness. Then I started with a cough that ran for a month that

even my rheummy

> ignorred....my internist noticed and I was told that I had drug

induced

> pneumonitis and stopped MTX immediately...this can be fatal if

left untreated. I

> was lucky that no permenent damage was done to my lungs and they

healed. So

> he put me back on MTX but the injections. The same side effects

came back

> but were even worst and then I started with mouth sores, eye

sores, throat

> sores, genitalia sores and he upped my folic acid from 1mg a day

to 5 mg a day

> and then added leukovorin to that to try to stop the side

effects. Finally

> enough was enough and I stopped taking MTX on my own. The side

effects where

> not worth any little bit of good the drug was doing. I lived in

bed or laying

> on the bathroom floor. During this same time he also started me

on Enbrel

> twice a week. At first it worked great...then I started getting

skin

> reactions as well as it appeared the drug was becoming less

effective for me. I also

> had some insurance changes that made it very expensive. So I

stopped it too.

>

> My rheummy before he moved away a month ago prescribed Humira. I

am still

> waiting to start it as he forgot to fill out the paperwork for

financial

> assistance. So I will wait until I see the new doc to see what he

plans to do. I

> really do not want to take any more of the TNF DMARD drugs. My

reason is I

> have one friend that went blind in one eye from rare side effect

of Enbrel

> and another friend that has Lymphoma from taking remicaide.

Another lady I met

> that nearly died of infection from Humira. So I am looking at

kineret..draw

> backs is that its a daily injection which I am not thrilled

about..yet

> another expensive drug..and something the requires refrigeration

so it will be a

> pain to drag around. I have heard that for many with allergies

they get good

> response from it as it is similar in action to the drug singular,

but it does

> not work for that many people.

>

> I have been offered Rituxin..but I refused...this is yet another

chemo

> drug...which methotrexate is a chemo drug also...NO more chemo too

many side

> effects. Remicaide must be given IV and I have terrible veins and

would need a

> line just to get it and I do not want that..plus the side effects

and such are

> a big NO for me.I can not take plaquinil or Azuflazine because I

am allergic

> to both.

>

> so maybe a magic drug is on the horizin.

>

> I use to work for a major computer manufacturer standing 10-12 hrs

a day

> working with very small electronic parts. I can no longer do that

and my job

> fired me and put me out on disability. I still cook and do a

little at

> home..but in small spurts. I have days where my hands hurt really

bad and others

> where they are fine. I would suggest getting adaptive devices to

help. I have

> replaced the regular door knobs with french handles. My kitchen

faucet has

> flip handle now. Large handled knives, and can openner.

>

> In also of this I had my weight loss surgery May 2004 and I went

into

> remission for about 9 months and took NO meds. But it soon ended.

>

> Toni

> RA, OA and Fibro

> Lapband 5/04

>

>

>

>

> In a message dated 6/28/05 4:49:39 A.M. Central Daylight Time,

> writes:

>

> Here are my questions:

> How long and how progressed is your RA?

> What drug are you on? It is injectible?

> What therapies did you try before turning to Rx therapy?

> How long did it take for RA to progress to get you to try Rx

therapy?

> What side effects have you had?

> If you work on your feet or using your hands, how do you deal with

the

> pain both during and after? (Sometimes I can barely stand long

enough

> to cook my family's meals, as it hurts clear down through my shins

and

> joints.)

>

> Thank you in advance for anything you have to offer.

>

> Sara

>

>

>

>

>

>

>

[Guest guest]

Oh my gosh. It certainly sounds as if you've been through the ringer

on these drugs. These types of things are my fears. My last

pregnancy was one from the pit of h3ll and so I will not be having

any more babies, but from what you describe, it seems the " torture "

of that pg could be carried on through these drugs.

Wow. I just don't even know what to say. Here's to hoping the

Humira does something good for you. I'll be taking this info to the

doc w/ me. Thank you so much.

Sara

>

> Sara,

> I will Answer you questions as you have asked them. But to give

you some

> background info I am 40 yo and was Dx'd 3-4 yrs ago after suffering

for almost

> a year. My symptoms came on gradually and I thought they were all

just from

> stress and over work until my hands were twice there normal size,

numb and of

> no use.

>

> I have since dx had left carpel tunnel release which worked wonders

for the

> first year and is now OK. I have a lot of damage in my hips. My

last x-ray

> should severe arthritic changes in the hip joint and I have bone

spurs

> floating around in the joint. I am waiting to see ortho doc to see

what can be done

> about that. I current have no rheummy as my lat one moved away and

I am

> waiting for appnt with new doc. We only have one doc in my city

and with in a

> nearly 100 mile radius.

>

> I have been on the following drugs in the order I have taken them:

Arava,

> prednisone, MTX(pills and injections) Enbrel, flexeril, Bextra,

Lodine, folic

> acid and leukovorin...there are many other meds I have been on that

are no

> specific to treatment for my RA..and those are prozac, zoloft,

lexapro, ambian,

> sonata, elavil, trazadone, prevacid, nexium, ultram, darvocet and

toradol.

>

> Currently I am on lodine XL and Nexium to protect my stomach from

the

> lodine. I am a sugical weight loss patient( lapband) and as a

general rule any

> medication that can cause ulcers or GI distress is avoid if

possible. These are

> oral medications.

>

> Before and during traditional therapy I was taking evening primrose

oil to

> help with inflammation, valerian root for sleep and fish oil..which

did nothing

> for me. I also take multi-vitamin daily.

>

> I was placed on DMARD treatment immediately with Arava, bextra and

> prednisone. The arava is an oral pill that work well for me for

about a year and

> stopped working. It is not a drug of choice if you are still

planning to have

> more children as it is fetal toxic. There is a way to purge the

drug chemical

> out your system..but it is recommend that you wait 6-12 months

after the last

> does before becoming pregnent. It does require close monitoring

of liver

> and kidney function via bloodwork. I use to go every two weeks.

As this drug

> can do damage if not supervised closely. I had no side effects

from it.

> Bextra was a life saver for me until they took it off the

market..and now I am

> left with nothing I can take. My surgeon even used it for post-op

swelling as

> it was soo easy on the stomach. Prednisone I hated....cause svere

GI

> distress, made me very cranky and I had NO appetite. This was on

doses as small as

> 2.5 mg to 5 mg a day. I finally stopped the prednisone on my

own. My doc

> also required that I take calcium suppliment every day that I was

on prednisone

> because it ruins your bones.

>

> I changed rheummies and the new doc also changed my meds. He felt

the Arava

> was not effective enough and the disease was progressing. So I

started

> Methotrexate pills. It was HORRIBLE!!! I could not work for all

the side

> effects. Constant vomiting, diarrhea, nausea, dizziness,

headache, fatigue and

> weakness. Then I started with a cough that ran for a month that

even my rheummy

> ignorred....my internist noticed and I was told that I had drug

induced

> pneumonitis and stopped MTX immediately...this can be fatal if

left untreated. I

> was lucky that no permenent damage was done to my lungs and they

healed. So

> he put me back on MTX but the injections. The same side effects

came back

> but were even worst and then I started with mouth sores, eye

sores, throat

> sores, genitalia sores and he upped my folic acid from 1mg a day

to 5 mg a day

> and then added leukovorin to that to try to stop the side

effects. Finally

> enough was enough and I stopped taking MTX on my own. The side

effects where

> not worth any little bit of good the drug was doing. I lived in

bed or laying

> on the bathroom floor. During this same time he also started me

on Enbrel

> twice a week. At first it worked great...then I started getting

skin

> reactions as well as it appeared the drug was becoming less

effective for me. I also

> had some insurance changes that made it very expensive. So I

stopped it too.

>

> My rheummy before he moved away a month ago prescribed Humira. I

am still

> waiting to start it as he forgot to fill out the paperwork for

financial

> assistance. So I will wait until I see the new doc to see what he

plans to do. I

> really do not want to take any more of the TNF DMARD drugs. My

reason is I

> have one friend that went blind in one eye from rare side effect

of Enbrel

> and another friend that has Lymphoma from taking remicaide.

Another lady I met

> that nearly died of infection from Humira. So I am looking at

kineret..draw

> backs is that its a daily injection which I am not thrilled

about..yet

> another expensive drug..and something the requires refrigeration

so it will be a

> pain to drag around. I have heard that for many with allergies

they get good

> response from it as it is similar in action to the drug singular,

but it does

> not work for that many people.

>

> I have been offered Rituxin..but I refused...this is yet another

chemo

> drug...which methotrexate is a chemo drug also...NO more chemo too

many side

> effects. Remicaide must be given IV and I have terrible veins and

would need a

> line just to get it and I do not want that..plus the side effects

and such are

> a big NO for me.I can not take plaquinil or Azuflazine because I

am allergic

> to both.

>

> so maybe a magic drug is on the horizin.

>

> I use to work for a major computer manufacturer standing 10-12 hrs

a day

> working with very small electronic parts. I can no longer do that

and my job

> fired me and put me out on disability. I still cook and do a

little at

> home..but in small spurts. I have days where my hands hurt really

bad and others

> where they are fine. I would suggest getting adaptive devices to

help. I have

> replaced the regular door knobs with french handles. My kitchen

faucet has

> flip handle now. Large handled knives, and can openner.

>

> In also of this I had my weight loss surgery May 2004 and I went

into

> remission for about 9 months and took NO meds. But it soon ended.

>

> Toni

> RA, OA and Fibro

> Lapband 5/04

>

>

>

>

> In a message dated 6/28/05 4:49:39 A.M. Central Daylight Time,

> writes:

>

> Here are my questions:

> How long and how progressed is your RA?

> What drug are you on? It is injectible?

> What therapies did you try before turning to Rx therapy?

> How long did it take for RA to progress to get you to try Rx

therapy?

> What side effects have you had?

> If you work on your feet or using your hands, how do you deal with

the

> pain both during and after? (Sometimes I can barely stand long

enough

> to cook my family's meals, as it hurts clear down through my shins

and

> joints.)

>

> Thank you in advance for anything you have to offer.

>

> Sara

>

>

>

>

>

>

>

[Guest guest]

Sara:

You're right - even if my grandma had been dx at that

time, no way would anyone have thought a child would

have that too, or any form of arthritis. Since my dx,

anytime my kids say any joint hurts, they are

fatigued, or have any muscle aches, I cringe and pray

they don't have RA, fibro like mom, or any other of

the many immune system problems.

Kathe in CA

--- saralaughs02 <saralaughs02@...> wrote:

> Kathe,

>

> The fact that neither of us was Dx w/ RA...and you

> figure how many

> years ago...I think was directly BC of our age.

> Even my PCP

> said, " The only reason I know it's RA is bc it's

> some form of

> arthritis and you're way too young for

> osteo-arthritis. " Who thinks

> any form of arthritis in such young children.

>

> TG for today's technology.

>

> Sara

>

>

> > > > > > > Here are my questions:

> > > > > > > How long and how progressed is your RA?

> > > > > >

> > > > > > Diagnosed 17 months ago. Aware of a

> connective

> > > tissue problem

> > > > (had

> > > > > > lab tests and visits with a rheumy for

> about 6

> > > years)

> > > > > >

> > > > > > > What drug are you on? It is injectible?

> > > > > >

> > > > > > plaquenil, celebrex, methotrexate, folic

> acid.

> > > (Am also

> > > currently

> > > > > > trying two Chinese medicine remedies under

> the

> > > guidance of my

> > > > > > acupuncturist.)

> > > > > >

> > > > > > > What therapies did you try before

> turning to

> > > Rx therapy?

> > > > > >

> > > > > > Primarily nutritional and acupuncture

> > > > > >

> > > > > > > How long did it take for RA to progress

> to

> > > get you to try Rx

> > > > > > therapy?

> > > > > >

> > > > > > As soon as I was diagnosed, I started

> disease

> > > modifying anti-

> > > > > > rheumatic drugs.

> > > > > >

> > > > > > > What side effects have you had?

> > > > > >

> > > > > > Though Plquenil is supposed the be the

> mildest

> > > of the DMARDs, I

> > > > had

> > > > > a

> > > > > > number of odd effects from it at

> > > first...excessive thirst,

> > > slowed

> > > > > > thinking, etc. They all went away in time.

> No

> > > side effects from

> > > > the

> > > > > > celebrex. Methotrexate was a scary thing

> to

> > > read about and

> > > > consider

> > > > > > taking, but it has helped me tremendously,

> and

> > > the only side

> > > > > effects

> > > > > > I've had have been next-day tiredness. All

> of

> > > my lab tests have

> > > > > been

> > > > > > completely normal. Never had any nausea,

> > > though I was on the

> > > > > highest

> > > > > > oral dose for awhile.

> > > > > >

> > > > > > > If you work on your feet or using your

> > > hands, how do you deal

> > > > > with

> > > > > > the

> > > > > > > pain both during and after? (Sometimes

> I

> > > can barely stand

> > > long

> > > > > > enough

> > > > > > > to cook my family's meals, as it hurts

> clear

> > > down through my

> > > > > shins

> > > > > > and

> > > > > > > joints.)

> > > > > >

> > > > > > Ice, elevation, hot rice bags, balms, self

> > > massage.

> > > > > > >

> > > > > > > Thank you in advance for anything you

> have

> > > to offer.

> > > > > > >

> > > > > > > Sara

> > > > > >

> > > > > > Good luck, Sara!

> > >

> > >

> > >

> > >

> > >

> >

> >

> >

> > Kathe in CA

> >

> >

> > __________________________________________________

> >

[Guest guest]

Sara:

You're right - even if my grandma had been dx at that

time, no way would anyone have thought a child would

have that too, or any form of arthritis. Since my dx,

anytime my kids say any joint hurts, they are

fatigued, or have any muscle aches, I cringe and pray

they don't have RA, fibro like mom, or any other of

the many immune system problems.

Kathe in CA

--- saralaughs02 <saralaughs02@...> wrote:

> Kathe,

>

> The fact that neither of us was Dx w/ RA...and you

> figure how many

> years ago...I think was directly BC of our age.

> Even my PCP

> said, " The only reason I know it's RA is bc it's

> some form of

> arthritis and you're way too young for

> osteo-arthritis. " Who thinks

> any form of arthritis in such young children.

>

> TG for today's technology.

>

> Sara

>

>

> > > > > > > Here are my questions:

> > > > > > > How long and how progressed is your RA?

> > > > > >

> > > > > > Diagnosed 17 months ago. Aware of a

> connective

> > > tissue problem

> > > > (had

> > > > > > lab tests and visits with a rheumy for

> about 6

> > > years)

> > > > > >

> > > > > > > What drug are you on? It is injectible?

> > > > > >

> > > > > > plaquenil, celebrex, methotrexate, folic

> acid.

> > > (Am also

> > > currently

> > > > > > trying two Chinese medicine remedies under

> the

> > > guidance of my

> > > > > > acupuncturist.)

> > > > > >

> > > > > > > What therapies did you try before

> turning to

> > > Rx therapy?

> > > > > >

> > > > > > Primarily nutritional and acupuncture

> > > > > >

> > > > > > > How long did it take for RA to progress

> to

> > > get you to try Rx

> > > > > > therapy?

> > > > > >

> > > > > > As soon as I was diagnosed, I started

> disease

> > > modifying anti-

> > > > > > rheumatic drugs.

> > > > > >

> > > > > > > What side effects have you had?

> > > > > >

> > > > > > Though Plquenil is supposed the be the

> mildest

> > > of the DMARDs, I

> > > > had

> > > > > a

> > > > > > number of odd effects from it at

> > > first...excessive thirst,

> > > slowed

> > > > > > thinking, etc. They all went away in time.

> No

> > > side effects from

> > > > the

> > > > > > celebrex. Methotrexate was a scary thing

> to

> > > read about and

> > > > consider

> > > > > > taking, but it has helped me tremendously,

> and

> > > the only side

> > > > > effects

> > > > > > I've had have been next-day tiredness. All

> of

> > > my lab tests have

> > > > > been

> > > > > > completely normal. Never had any nausea,

> > > though I was on the

> > > > > highest

> > > > > > oral dose for awhile.

> > > > > >

> > > > > > > If you work on your feet or using your

> > > hands, how do you deal

> > > > > with

> > > > > > the

> > > > > > > pain both during and after? (Sometimes

> I

> > > can barely stand

> > > long

> > > > > > enough

> > > > > > > to cook my family's meals, as it hurts

> clear

> > > down through my

> > > > > shins

> > > > > > and

> > > > > > > joints.)

> > > > > >

> > > > > > Ice, elevation, hot rice bags, balms, self

> > > massage.

> > > > > > >

> > > > > > > Thank you in advance for anything you

> have

> > > to offer.

> > > > > > >

> > > > > > > Sara

> > > > > >

> > > > > > Good luck, Sara!

> > >

> > >

> > >

> > >

> > >

> >

> >

> >

> > Kathe in CA

> >

> >

> > __________________________________________________

> >

[Guest guest]

I agree 100% Lexi. As someone that has had multiple joint surgeries

due to RA, I believe that the risks from surgery are higher than from

the side effects of medications.

Just anesthesia alone has risks and complications. Then there is the

infection risk. We have a few members that can tell us first hand

what can happen if a joint replacement gets infected. Most medication

side effects go away when the meds are discontinued.

But another serious aspect of not treating RA or the meds just not

working, is if it goes to our organs.

My new knees are wonderful, worth every bit of risk, but it would have

been nice to be able to prevent needing them in the first place.

Just my 2 cents for what it's worth. Everyone has to decide what is

best for them.

a

On Jun 29, 2005, at 1:16 PM, andra wrote:

> As I read this, I thought I'd share with you the other side.  I'm far

> more upset now that I'm in the surgery phase of the disease than I

> ever was before and it has affected me mentally and physically more

> than ever before with all the surgeries I'm having.  Any medical

> decision, drugs, no drugs or surgery is a matter of weighing risks

> and benefits...I venture to say that for 90% of us, the benefit of

> quality of life is worth the risk of many of the medications.

> ...I have had this disease for 15 years...I'm 31.  I am at the point

> of all the surgeries because the RA wasn't optimally treated until

> last year when they added Methotrexate, from which I'm lucky and can

> say I've not had a single side effect.

> Methotrexate 25mg once a week made a lot of difference for me and my

> quality of life.  When not all the aches and pains cleared up,

> further investigation showed lots of damage to my joints...so from

> there, I'm in surgery mode.  I've had 4 back surgeries (nearly died

> from meningitis), just had the 1st of 4-5 surgeries on my wrists (a

> joint that can't be effectively replaced and trust me, I can barely

> pick up my 12 lb dog, I don't know how I  could cook, clean, pick up

> 4 kids with the wrists I've got) and need foot surgery.  All of these

> have forced me to take long periods of time off work and the stress

> is incredible during the surgeries.  It isn't easy to deal with the

> acute pain and recovery from multiple surgeries.  each one wears me

> down more.  Sometimes the surgeries don't work either. 

> I'm  in no way saying you're making the wrong decision by not taking

> the meds...but I don't think you've got the right idea about the

> surgery aspect either.  Whatever decision you make, just make sure it

> is informed...you can always stop the drugs if you have problems or

> if the benefit isn't worth the risk to you.

> Good luck,

> Lexi

[Guest guest]

I agree 100% Lexi. As someone that has had multiple joint surgeries

due to RA, I believe that the risks from surgery are higher than from

the side effects of medications.

Just anesthesia alone has risks and complications. Then there is the

infection risk. We have a few members that can tell us first hand

what can happen if a joint replacement gets infected. Most medication

side effects go away when the meds are discontinued.

But another serious aspect of not treating RA or the meds just not

working, is if it goes to our organs.

My new knees are wonderful, worth every bit of risk, but it would have

been nice to be able to prevent needing them in the first place.

Just my 2 cents for what it's worth. Everyone has to decide what is

best for them.

a

On Jun 29, 2005, at 1:16 PM, andra wrote:

> As I read this, I thought I'd share with you the other side.  I'm far

> more upset now that I'm in the surgery phase of the disease than I

> ever was before and it has affected me mentally and physically more

> than ever before with all the surgeries I'm having.  Any medical

> decision, drugs, no drugs or surgery is a matter of weighing risks

> and benefits...I venture to say that for 90% of us, the benefit of

> quality of life is worth the risk of many of the medications.

> ...I have had this disease for 15 years...I'm 31.  I am at the point

> of all the surgeries because the RA wasn't optimally treated until

> last year when they added Methotrexate, from which I'm lucky and can

> say I've not had a single side effect.

> Methotrexate 25mg once a week made a lot of difference for me and my

> quality of life.  When not all the aches and pains cleared up,

> further investigation showed lots of damage to my joints...so from

> there, I'm in surgery mode.  I've had 4 back surgeries (nearly died

> from meningitis), just had the 1st of 4-5 surgeries on my wrists (a

> joint that can't be effectively replaced and trust me, I can barely

> pick up my 12 lb dog, I don't know how I  could cook, clean, pick up

> 4 kids with the wrists I've got) and need foot surgery.  All of these

> have forced me to take long periods of time off work and the stress

> is incredible during the surgeries.  It isn't easy to deal with the

> acute pain and recovery from multiple surgeries.  each one wears me

> down more.  Sometimes the surgeries don't work either. 

> I'm  in no way saying you're making the wrong decision by not taking

> the meds...but I don't think you've got the right idea about the

> surgery aspect either.  Whatever decision you make, just make sure it

> is informed...you can always stop the drugs if you have problems or

> if the benefit isn't worth the risk to you.

> Good luck,

> Lexi