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Sue,

I was just diagnosed, and unfortunatley my Ortho dr didn't send his test results

to my Rheumotologist. I was positive RH factor, Rhuemotologist took more blood

and said he will start me on a DMARD on my next visit. Been a long hard struggle

to get a diagnosis......

 

Thanks.

Brad

> Thanks Barbara,

> I was recently diagnosed with RA. I have been through 3 NSAIDs so

> far with no luck, and Pred which doesn't seem to touch me at all.

> Had steroid shots in my hands which did help some. I have my second

> visit in 2 weeks and hope to get on something that will help. The

> pain and stiffness is driving me crazy. Anyone using Voltaren gel on

> their hands? I am and don't see any effect from it.

>

> Brad

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That's good, Brad. Hopefully it won't take long to find a DMARD that

will help you. Sometimes it takes a while to find the right cocktail

that will do the trick. Enbrel, one of the biologics, is my miracle

drug, but rheumatologists usually start with something less expensive

to see if that will work. Insurance companies also have restrictions,

like you have to fail at two other DMARD's first before they will pay

for a biologic.

Good luck! Let us know how it goes.

Sue

On Apr 5, 2009, at 11:51 PM, Brad wrote:

> Sue,

> I was just diagnosed, and unfortunatley my Ortho dr didn't send his

> test results to my Rheumotologist. I was positive RH factor,

> Rhuemotologist took more blood and said he will start me on a DMARD

> on my next visit. Been a long hard struggle to get a diagnosis......

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Hi ann:

Welcome to our support group. My RA is in my hands, thumbs, and wrists,

also in my feet and ankles. When I have a flare in my hands, my thumbs

are the worst.

I hope you get some RX's for your pain that really work. The surgery

seems radical at this point. You are so young also.

Wishing you pain free days ahead. Again, welcome.

Hugs,

Barbara

--- In , " swinney_family " <swinney_family@...>

wrote:

>

> Hi Everyone

> My name is MayAnn live in Kansas w/my ol man our kids & animals. I was

diagnosed a few mnths back w/arthritis @ base of my right thumb (im

right handed go fig) ortho surg. & RA doc both told me its a localized

arthritis gave me voltaren gel & it wrked for a bit today she put me on

lidoderm patches told me if this dont wrk its back to ortho surg. he

wants to cut the tendion but my family doc said that cutting the tendion

in the thumb wont make it better it will make the pain even worse & even

if it helped it would be maybe a 10yrs fix. Im only 33 its like to use

my hands longer than 10yrs more.

> Im not asking for medical advise just information im sure im not the

only 1 w/this or similar issues.

> Thanks MayAnn

>

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  • 1 month later...
Guest guest

Welcome Blue - I also have Seronegative RA and possible Psoriatic RA. I

currently take 0.8 of MTX injection once a week and 1200mg of Sulfasalazine

twice daily. I will be starting on Enbrel next week (yay!!) and as you can tell,

I'm hoping this will be the combination to work for me. I've been barely by a

thread hanging on for too long now, so I hope this is it. The torrential rains

we've had all week have not helped matters any at all - my pain levels have been

at a 10 everyday.

Keep in close contact with your Rheumy. They can mix and match and change up

your meds until the right combination is found for you. We don't have to suffer

in pain. Right now I'm too stubborn to take the prednisone I have. My weight is

out of control as it is, but I am almost to the point where I may not have a

choice.

Anyway - welcome to the group and wishing you pain free days.

Doreen :)

hi im new here. I post on another board but heard some good things about this

one. I was diagnosed with seronegative RA a few months ago. Its been a few

years of having symptoms. I just started mtx a couple of months ago and it

seems to be helping although im in some kind of flare right now. i hope to be

able to meet more ppl with this crazy thing we have called RA thanks a bunch

:) Blue

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Hey Blue,

Welcome! Was wondering when you'd find your way here. What's your flare

like right now?

Are you also taking folic acid with your mtx? Glad to see you here...there

are so many kind, warm hearted

people on here with so much information to share regarding personal

experiences as well as , our list moderater who can produce anything at

anytime :)

Heidi in Mass.

(redsox)

On Wed, May 20, 2009 at 9:02 PM, blueeyedgrl73 <blueeyedgrl73@...>wrote:

>

>

> hi im new here. I post on another board but heard some good things about

> this one. I was diagnosed with seronegative RA a few months ago. Its been a

> few years of having symptoms. I just started mtx a couple of months ago and

> it seems to be helping although im in some kind of flare right now. i hope

> to be able to meet more ppl with this crazy thing we have called RA thanks a

> bunch :) Blue

>

>

>

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Hi Blue,

I'm sorry about your diagnosis, you have found a great place. I'm glad

the mtx is working for you. If your flare gets too bad, you might talk

to your doctor. He might give you a burst of steroids. I like the

steroid shot, when I visit the rheumy. We deal with enough pain, and

flaring is just not exceptable in our life.

There are so many great people here. I've been in the group for a long

while, and its been a life saver. We have a wonderful moderator who

always help us in the time of need, when we don't know which way to

turn. She can find info for us, and it just helps so much.

Please know I'm here if you need if you ever need a friend. You will

always have support here, I hope you find your home here.

Take care,

Tawny

--- In , " blueeyedgrl73 " <blueeyedgrl73@...>

wrote:

>

> hi im new here. I post on another board but heard some good things

about this one. I was diagnosed with seronegative RA a few months ago.

Its been a few years of having symptoms. I just started mtx a couple of

months ago and it seems to be helping although im in some kind of flare

right now. i hope to be able to meet more ppl with this crazy thing we

have called RA thanks a bunch :) Blue

>

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Welcome blue!

I can totally relate to you, It's tough.... Hang in there.

Mari :)

> >

> > hi im new here. I post on another board but heard some good things

> about this one. I was diagnosed with seronegative RA a few months ago.

> Its been a few years of having symptoms. I just started mtx a couple of

> months ago and it seems to be helping although im in some kind of flare

> right now. i hope to be able to meet more ppl with this crazy thing we

> have called RA thanks a bunch :) Blue

> >

>

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  • 1 month later...
Guest guest

Initially they will do blood tests, maybe x-rays, and tell you what you can do

on a daily basis to make it a little easier.  You'll probably get something for

pain management and they will discuss a treatment plan. It's not a big deal

so try not to over-worry about it. If you're having problems with sleep,

I would discuss it with them. A lot of us have problems with sleep, I take a

mild sleep aide and it helps a lot. Try not to be anxious, the stress doesn't do

anything towards feeling better. Speaking from experience, been there, done

that, have the t-shirt.

Stan

Seattle, Cloudy.

Subject: [ ] Newbie

Hi to all-

My name is Debi, and I am 53 years old and newly diagnosed with RA.

Haven't even been to the Rheumatologist yet. (that comes next week) Up

until a month ago I would not agree to take pain medication, but did

agree to take a combo of NSAIDS, med for sleep, Lexapro, and Lyrica.  I

had a history of atleast yearly flareups with no diagnosis.  It was just

this past May that I tested positive Rheumatoid Factor.  I have agreed

to go to a pain clinic, but am so eager to find out information and have

people share their experences with me as far as what to expect.  Help!

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Hi Debi, and welcome to the group. If it turns out that you do have

RA, you will need to be put on a DMARD in order to prevent joint

damage, which is irreversible. The side effects of the DMARD's may

sound scary, but believe me, the effects of RA are much scarier.

Let us know what the rheumatologist says.

Sue

On Jul 9, 2009, at 8:38 PM, Debi martin wrote:

>

> Hi to all-

>

> My name is Debi, and I am 53 years old and newly diagnosed with RA.

> Haven't even been to the Rheumatologist yet. (that comes next week) Up

> until a month ago I would not agree to take pain medication, but did

> agree to take a combo of NSAIDS, med for sleep, Lexapro, and

> Lyrica. I

> had a history of atleast yearly flareups with no diagnosis. It was

> just

> this past May that I tested positive Rheumatoid Factor. I have agreed

> to go to a pain clinic, but am so eager to find out information and

> have

> people share their experences with me as far as what to expect. Help!

>

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Guest guest

Welcome Debi,

You have found a wonderful group to find information and support. The

rheumy will try to find the right meds for you. Its very important to

treat the RA, with meds to stop the progression of the disease.

I have problems with NSAIDS, everyone of them make me sick at my

stomach. I'm suppose to be on mobic right now, but I'm not taking them.

My rheumy doesn't understand how it feels to be sick all the time. It

gets so bad, I throw up in my sleep.

I hope you have a wonderful rheumy, and the visit goes well. I hope you

stay with us for awhile, so we can get to know you. Were all a family

here. So, I am looking forward to getting to know you more.

I am 46, live in OK. I was diagnosed with RA in 01. I also have fibro,

neuropathy pain, and other health issuses. It seems like the list never

ends. It does take time to get use to it all, but it gets better.

You take care, and keep us posted on your visit.

Tawny

--- In , " Debi martin " <sheilacakes@...>

wrote:

>

>

> Hi to all-

>

> My name is Debi, and I am 53 years old and newly diagnosed with RA.

> Haven't even been to the Rheumatologist yet. (that comes next week) Up

> until a month ago I would not agree to take pain medication, but did

> agree to take a combo of NSAIDS, med for sleep, Lexapro, and Lyrica. I

> had a history of atleast yearly flareups with no diagnosis. It was

just

> this past May that I tested positive Rheumatoid Factor. I have agreed

> to go to a pain clinic, but am so eager to find out information and

have

> people share their experences with me as far as what to expect. Help!

>

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  • 4 months later...

In a message dated 11/29/2009 6:43:36 A.M. Central Standard Time,

sewshawna@... writes:

I will probably just browse awhile until i get the feel for you all

Welcome,

I was at a point where I couldn't get out of a chair,(or toilet) or out of

the bathtub. I saw my rheumatologist -- blood work had already been done at

my PC doc -- he ran the blood tests and said I probably had one of three

Dx, but that Prednisone was the start for all three.

He gave me 25 mg of Prednisone. I stopped and filled the prescription and

within an hour and a half, I was able to teach my line dancing class. In

three weeks, I got the Dx of RA and was started on Methotrexate (Mtx). We

gradually cut the Prednisone and now I take 5 mg a day. I've been doing this

for almost two years and now am on Remicade infusions and Imuran. My pain is

gone for the most part and Crohn's is better as well.

I was actually relieved when he Dx'd me because my PC doc wasn't really

listening to my symptoms and it felt good to know what it was and begin

treating it.

dd

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Good Morning Newbies and dear Friends,

A day of liquid sunshine for us here in So Fla, so a good day to keep up on

mail. I hope that everyone had the happiest of holidays with friends and

families, preferably pain free, which seems to be our biggest challenge. If

managing our pain was just as easy as waiting for the thermometer to pop out of

the turkey!

I wish to welcome all our new friends, but as everyone previously has said, I am

sad for the reason that brings our paths to cross. Usually you only hear from

me after one of my frequent hospital stays for a variety of reasons. However, I

started out at just about the same places that you are at now approximately 15

years ago. My RA affected primarily my knees (TKR on both knees) and my hands.

The problem that I have is that I have been on MTX, Enbrel, Arava, REmicade,

Prednisone, Orencia.......have I missed anything?????? I have been the patient

that has had ALL the bad side effects (cellulitis, infections from every part of

my body, and then the BIG one, sepsis). The first time I had sepsis, I went

into septic shock, my heart stopped, they had to shock me, inject those drugs

into heart. When my girls came into see me, I was still cold and blue. The

patella on the right knee replacement cracked one day as I was sitting down on

the elevated toilet seat. The ortho surgeon tried several attempts and

different approaches, I was left with no muscle on the interior aspect of the

right leg and incisions that would not heal due to the prednisone. Months went

by and many, many bouts of sepsis where I was on a vent and not expected to

recover and finally my family and I decided that perhaps I would be better off

with a right leg amputation above the knee. That was done 7/07. Fewer sepsis

bouts and not nearly as severe, but after starting Orencia, I had my first bout

of cellulitis. The pain that I have from the phantom pain, diabetic neuropathy

and the RA pain has just been unbelievable. My rheumy has just kinda stepped

out of active duty for me because he can't prescribe the " designer medications " .

He can't even give me Celebrex due to severe GI bleeding spells. Last year I

started complaining about the same kind of pain in my left knee that I had in my

right knee following the fracture. Well, lucky me, the patella in the left knee

is also fractured. In my situation, they have very limited because of

everything else in my health condition. The rheumy is refusing to treat any of

my pain, so that is falling on my ID doctor. Currently, she has me on Oxycontin

and Percocet for breakthrough pain. I didn't mean for this to be so long, but

this is the reason I am so reluctant to render an opinion on any of our

medications, because I am not the norm,I am the freak. There was a time when I

did get great

relief from Enbrel, but it seems like a lifetime ago and now with everything

else that has happened, I am unable to take any of those goodies any more.

However, this group is better than any medicine any doctor can give you. We

support one another, LISTEN, not just hear you and we have a

Cheese and Whine hour everyday. The " Whine " hour is the best around and most of

us have been to them all! And don't forget I have my wonderful cabana boys

that cater to my every need. Unfortunately, with Ron retiring, I have had to

reduce the number of employees, but I have kept the best of the bunch. Come

summertime, it's Pina Coladas, Margueritas, Bloody s and of course is.

Now if this can't cure us there just ain't no hope for us.....LOL.

I look forward to getting to know you all better. I will keep you in my prayers

and thoughts for pain free days, doctors with a degree in compassion and

laughter which is the best medicine for any disease. Please forgive me for not

responding to questions about the medications, but I don't want to scare anyone!

Gentle, tender,angel hugs to all...................................

Debs in FL

[ ] newbie

Hi a:

I am sorry that you are suffering so much. Your symptons sounded exactly

like mine when I was struck out of the blue. That was 6 1/2 years ago. I awoke

one morning, could not get out of bed, and in so much pain I could not believe

it. My husband helped me to get up and stand. I could bearly stand and walking

was almost impossible. My hands were so swollen and bent into a claw like

postion. I could not dress myself, get off and on the toilet without help. The

next day I could not feed myself, hold a glass or care for myself. I called my

PC, and had an appt. the next day. I was in agony, and in bed all day. I

thought I had a brain tumor. I told my husband if the doctor can't find out

what is wrong with me, take me to the Cape Cod Hosp. and I will have the dr. put

in an intervenious bag of steroids. It was in the mid of winter, hard snow and

very cold. I was on crutches because I could not walk, and my hands were in so

much pain.

When my dr. walked in he was so shocked to see the state I was in. He said " Oh

my God Barbara, if I didn't know better, I would say you have R.A. " What the

heck is that??? I had never heard of it before. He sent me to an emergency

appt. with a Rheumy. She drew fuild out of my knee, tested it for gold, there

was none, and she felt I had RA. She drew my blood for further tests. She

started me on mega doses of Pred., plus gave me 2 shots. I went home and she

called me the next day to confrim I had RA. So that is when RA reared its ugly

head to me. She started me immediately on MTX. The pills made me so sick,

that a few weeks later she taught me to self inject. each week, which I still

do. I looked up RA on my computer, got so damned scared, I never looked again.

For the last year, I have been in a total medicine induced remission. No

swelling, pain, and no flares. My feet and ankles were hit the hardest, my

wrists, thumbs, and some fingers also. My hips were hit mildly. There were

many days I could not get out of bed, and could hardly stand on my feet or walk.

I used a walker and a cane for stability.

The meds. I take each day are: Sulfasalazine, Placquenil, Pred. ( I have never

been able to get off the Pred.}, and 1 X a week MTX, followed by Leucovorin 12

hrs. later. I take calcium, vit. D daily, and Actonal 1X a week.

How long this remission will last, I do not know, but I am very thankful

and grateful for it.

There is always hope for all of us. My " cocktalil " of meds. finally worked well

for me. We all search for that right " cocktail " of meds. to get us out of all

this pain and suffering.

You have done a good thing for yourself by joining our group. It is the

best thing I have done for myself. Here you will get support, caring, love,

help, and learn so much about this ugly beast " RA " . You can vent here, cry,

whine, rant and rave. We all understand, more than your family and your

friends. You can say what you want, and just know we care and will help you get

through this.

I hope you don't have RA, but if you do, it is not the end of the world. My

life has changed due to it, but I am just happy I can do things, maybe a

different way, but I can still do them. I rest everyday, as this is what my

Rheumy wants me to do. I can't shop for hours, but am happy if I can for a few

hours. At least I can do a little bit each time. The hardest thing for me was

to learn to pace myself. This was difficult for me as I did so much each day.

I learned the hard way. If I pushed myself, I would spend the next 3 days

trying to recover from it, and hardly able tro get out of bed. I did finally

come to terms with it all.

It took a long time for my friends to finally get it. The famous words, " You

look fine, healthy, and so beautiful. It can't be as bad as you say. Yes, it

is bad, it is horrible. I quit appologizing because I could not go and go. I

felt so guilty for not going off to lunch, movies, the beach etc. Now, I do

what I can when I can, and if not, I just stay home and care for myself.

Period.......

Wishing you many pain free days ahead. Take care of yourself, and rest as

much as you can. Do not feel bad about it. Your body is fighting the hardest

battle of its life. Resting does help. I hope you get a great Rheumy, who will

help you feel better and try to get you out of your pain and suffering. If you

do not like your Rheumy, search and find the best one for you. I love my

Rheumy, and she is the best dr. and takes such good care of me. You owe it to

yourself to have a wonderful dr.

Hugs,

Barbara

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Debs....I have the same reason for not responding to many questions.

I have had severe GI bleeding from prednisone and celebrex.

Mant drugs I can not take due to congenital hepatitis. They do not want to

interfere with my current resistance to liver issues

I have diabetic neuropathy also. I take neurotin - generic for that. It helps a

bit.

I think everyone should take what works with their body.  If you are lucky

enough to be able to take pain pills, there is no reason to suffer.

Raniolo

From: BadKneesDebs@... <BadKneesDebs@...>

Subject: Re: [ ] newbie

Date: Friday, December 4, 2009, 10:07 AM

 

Good Morning Newbies and dear Friends,

A day of liquid sunshine for us here in So Fla, so a good day to keep up on

mail. I hope that everyone had the happiest of holidays with friends and

families, preferably pain free, which seems to be our biggest challenge. If

managing our pain was just as easy as waiting for the thermometer to pop out of

the turkey!

I wish to welcome all our new friends, but as everyone previously has said, I am

sad for the reason that brings our paths to cross. Usually you only hear from me

after one of my frequent hospital stays for a variety of reasons. However, I

started out at just about the same places that you are at now approximately 15

years ago. My RA affected primarily my knees (TKR on both knees) and my hands.

The problem that I have is that I have been on MTX, Enbrel, Arava, REmicade,

Prednisone, Orencia..... ..have I missed anything???? ?? I have been the patient

that has had ALL the bad side effects (cellulitis, infections from every part of

my body, and then the BIG one, sepsis). The first time I had sepsis, I went into

septic shock, my heart stopped, they had to shock me, inject those drugs into

heart. When my girls came into see me, I was still cold and blue. The patella on

the right knee replacement cracked one day as I was sitting down on the elevated

toilet

seat. The ortho surgeon tried several attempts and different approaches, I was

left with no muscle on the interior aspect of the right leg and incisions that

would not heal due to the prednisone. Months went by and many, many bouts of

sepsis where I was on a vent and not expected to recover and finally my family

and I decided that perhaps I would be better off with a right leg amputation

above the knee. That was done 7/07. Fewer sepsis bouts and not nearly as severe,

but after starting Orencia, I had my first bout of cellulitis. The pain that I

have from the phantom pain, diabetic neuropathy and the RA pain has just been

unbelievable. My rheumy has just kinda stepped out of active duty for me because

he can't prescribe the " designer medications " . He can't even give me Celebrex

due to severe GI bleeding spells. Last year I started complaining about the same

kind of pain in my left knee that I had in my right knee following the fracture.

Well, lucky me,

the patella in the left knee is also fractured. In my situation, they have very

limited because of everything else in my health condition. The rheumy is

refusing to treat any of my pain, so that is falling on my ID doctor. Currently,

she has me on Oxycontin and Percocet for breakthrough pain. I didn't mean for

this to be so long, but this is the reason I am so reluctant to render an

opinion on any of our medications, because I am not the norm,I am the freak.

There was a time when I did get great

relief from Enbrel, but it seems like a lifetime ago and now with everything

else that has happened, I am unable to take any of those goodies any more.

However, this group is better than any medicine any doctor can give you. We

support one another, LISTEN, not just hear you and we have a

Cheese and Whine hour everyday. The " Whine " hour is the best around and most of

us have been to them all! And don't forget I have my wonderful cabana boys that

cater to my every need. Unfortunately, with Ron retiring, I have had to reduce

the number of employees, but I have kept the best of the bunch. Come summertime,

it's Pina Coladas, Margueritas, Bloody s and of course is. Now if this

can't cure us there just ain't no hope for us.....LOL.

I look forward to getting to know you all better. I will keep you in my prayers

and thoughts for pain free days, doctors with a degree in compassion and

laughter which is the best medicine for any disease. Please forgive me for not

responding to questions about the medications, but I don't want to scare anyone!

Gentle, tender,angel hugs to all......... ......... ......... ........

Debs in FL

[ ] newbie

Hi a:

I am sorry that you are suffering so much. Your symptons sounded exactly like

mine when I was struck out of the blue. That was 6 1/2 years ago. I awoke one

morning, could not get out of bed, and in so much pain I could not believe it.

My husband helped me to get up and stand. I could bearly stand and walking was

almost impossible. My hands were so swollen and bent into a claw like postion. I

could not dress myself, get off and on the toilet without help. The next day I

could not feed myself, hold a glass or care for myself. I called my PC, and had

an appt. the next day. I was in agony, and in bed all day. I thought I had a

brain tumor. I told my husband if the doctor can't find out what is wrong with

me, take me to the Cape Cod Hosp. and I will have the dr. put in an intervenious

bag of steroids. It was in the mid of winter, hard snow and very cold. I was on

crutches because I could not walk, and my hands were in so

much pain.

When my dr. walked in he was so shocked to see the state I was in. He said " Oh

my God Barbara, if I didn't know better, I would say you have R.A. " What the

heck is that??? I had never heard of it before. He sent me to an emergency appt.

with a Rheumy. She drew fuild out of my knee, tested it for gold, there was

none, and she felt I had RA. She drew my blood for further tests. She started me

on mega doses of Pred., plus gave me 2 shots. I went home and she called me the

next day to confrim I had RA. So that is when RA reared its ugly head to me. She

started me immediately on MTX. The pills made me so sick, that a few weeks later

she taught me to self inject. each week, which I still do. I looked up RA on my

computer, got so damned scared, I never looked again.

For the last year, I have been in a total medicine induced remission. No

swelling, pain, and no flares. My feet and ankles were hit the hardest, my

wrists, thumbs, and some fingers also. My hips were hit mildly. There were many

days I could not get out of bed, and could hardly stand on my feet or walk. I

used a walker and a cane for stability.

The meds. I take each day are: Sulfasalazine, Placquenil, Pred. ( I have never

been able to get off the Pred.}, and 1 X a week MTX, followed by Leucovorin 12

hrs. later. I take calcium, vit. D daily, and Actonal 1X a week.

How long this remission will last, I do not know, but I am very thankful and

grateful for it.

There is always hope for all of us. My " cocktalil " of meds. finally worked well

for me. We all search for that right " cocktail " of meds. to get us out of all

this pain and suffering.

You have done a good thing for yourself by joining our group. It is the best

thing I have done for myself. Here you will get support, caring, love, help, and

learn so much about this ugly beast " RA " . You can vent here, cry, whine, rant

and rave. We all understand, more than your family and your friends. You can say

what you want, and just know we care and will help you get through this.

I hope you don't have RA, but if you do, it is not the end of the world. My life

has changed due to it, but I am just happy I can do things, maybe a different

way, but I can still do them. I rest everyday, as this is what my Rheumy wants

me to do. I can't shop for hours, but am happy if I can for a few hours. At

least I can do a little bit each time. The hardest thing for me was to learn to

pace myself. This was difficult for me as I did so much each day. I learned the

hard way. If I pushed myself, I would spend the next 3 days trying to recover

from it, and hardly able tro get out of bed. I did finally come to terms with it

all.

It took a long time for my friends to finally get it. The famous words, " You

look fine, healthy, and so beautiful. It can't be as bad as you say. Yes, it is

bad, it is horrible. I quit appologizing because I could not go and go. I felt

so guilty for not going off to lunch, movies, the beach etc. Now, I do what I

can when I can, and if not, I just stay home and care for myself. Period...... .

Wishing you many pain free days ahead. Take care of yourself, and rest as much

as you can. Do not feel bad about it. Your body is fighting the hardest battle

of its life. Resting does help. I hope you get a great Rheumy, who will help you

feel better and try to get you out of your pain and suffering. If you do not

like your Rheumy, search and find the best one for you. I love my Rheumy, and

she is the best dr. and takes such good care of me. You owe it to yourself to

have a wonderful dr.

Hugs,

Barbara

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,

Thanks for responding. See even us " oldies " learn something new and need

support. My Dad had many of the same diseases and conditions that I suffer with

today and never had any answers. He used to call himself a " freak " because of

this. So hence, my phrase " freak " .

I take Lyrica for the neuropathy, fibro and in the hospital, they call it " pain

medicine " . Ugh....I too, get sporadic relief.

Well, busy days right now getting ready for the holidays. My youngest daughter

has been a true blessing in trying to do things " the way Mom

wound have done it herself " . I am so blessed. My oldest daughter just called

to confirm her second pregnancy. The new baby is due on

7-26-10. So many things to keep my mind busy and off my issues. When the world

quiets down, the pain becomes so loud, it is deafening.

Thoughts going out to you for a pain free weekendl

Gentle, tender, angel hugs..........

Debs in FL

[ ] newbie

Hi a:

I am sorry that you are suffering so much. Your symptons sounded exactly like

mine when I was struck out of the blue. That was 6 1/2 years ago. I awoke one

morning, could not get out of bed, and in so much pain I could not believe it.

My husband helped me to get up and stand. I could bearly stand and walking was

almost impossible. My hands were so swollen and bent into a claw like postion. I

could not dress myself, get off and on the toilet without help. The next day I

could not feed myself, hold a glass or care for myself. I called my PC, and had

an appt. the next day. I was in agony, and in bed all day. I thought I had a

brain tumor. I told my husband if the doctor can't find out what is wrong with

me, take me to the Cape Cod Hosp. and I will have the dr. put in an intervenious

bag of steroids. It was in the mid of winter, hard snow and very cold. I was on

crutches because I could not walk, and my hands were in so

much pain.

When my dr. walked in he was so shocked to see the state I was in. He said " Oh

my God Barbara, if I didn't know better, I would say you have R.A. " What the

heck is that??? I had never heard of it before. He sent me to an emergency appt.

with a Rheumy. She drew fuild out of my knee, tested it for gold, there was

none, and she felt I had RA. She drew my blood for further tests. She started me

on mega doses of Pred., plus gave me 2 shots. I went home and she called me the

next day to confrim I had RA. So that is when RA reared its ugly head to me. She

started me immediately on MTX. The pills made me so sick, that a few weeks later

she taught me to self inject. each week, which I still do. I looked up RA on my

computer, got so damned scared, I never looked again.

For the last year, I have been in a total medicine induced remission. No

swelling, pain, and no flares. My feet and ankles were hit the hardest, my

wrists, thumbs, and some fingers also. My hips were hit mildly. There were many

days I could not get out of bed, and could hardly stand on my feet or walk. I

used a walker and a cane for stability.

The meds. I take each day are: Sulfasalazine, Placquenil, Pred. ( I have never

been able to get off the Pred.}, and 1 X a week MTX, followed by Leucovorin 12

hrs. later. I take calcium, vit. D daily, and Actonal 1X a week.

How long this remission will last, I do not know, but I am very thankful and

grateful for it.

There is always hope for all of us. My " cocktalil " of meds. finally worked well

for me. We all search for that right " cocktail " of meds. to get us out of all

this pain and suffering.

You have done a good thing for yourself by joining our group. It is the best

thing I have done for myself. Here you will get support, caring, love, help, and

learn so much about this ugly beast " RA " . You can vent here, cry, whine, rant

and rave. We all understand, more than your family and your friends. You can say

what you want, and just know we care and will help you get through this.

I hope you don't have RA, but if you do, it is not the end of the world. My life

has changed due to it, but I am just happy I can do things, maybe a different

way, but I can still do them. I rest everyday, as this is what my Rheumy wants

me to do. I can't shop for hours, but am happy if I can for a few hours. At

least I can do a little bit each time. The hardest thing for me was to learn to

pace myself. This was difficult for me as I did so much each day. I learned the

hard way. If I pushed myself, I would spend the next 3 days trying to recover

from it, and hardly able tro get out of bed. I did finally come to terms with it

all.

It took a long time for my friends to finally get it. The famous words, " You

look fine, healthy, and so beautiful. It can't be as bad as you say. Yes, it is

bad, it is horrible. I quit appologizing because I could not go and go. I felt

so guilty for not going off to lunch, movies, the beach etc. Now, I do what I

can when I can, and if not, I just stay home and care for myself. Period...... .

Wishing you many pain free days ahead. Take care of yourself, and rest as much

as you can. Do not feel bad about it. Your body is fighting the hardest battle

of its life. Resting does help. I hope you get a great Rheumy, who will help you

feel better and try to get you out of your pain and suffering. If you do not

like your Rheumy, search and find the best one for you. I love my Rheumy, and

she is the best dr. and takes such good care of me. You owe it to yourself to

have a wonderful dr.

Hugs,

Barbara

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Hi sweet Debby:

 

I am excited for you with a new baby coming in the summer.  How great is that

for you!

 

How have you been feeling since last we talked?  I think of you all the time

and sure hope things have settled down health wise.  You so deserve a break

from all that stuff.

 

I am still feeling good.  Hard to believe with all I am going through.  I just

try to take one day at a time as that is all I can handle.  I love living here

with my son and family.  It has been an adjustment for me, but my love is good

now.  I am much more peaceful, and barely crying like I was.  I thought I

would never stop all that crying!!!!  Hard to get over a broken heart.

 

My family is all good, which I am thankful for.

 

Are you enjoying our cool weather this week?  Lots and lots of rain today and a

bit raw outside.  Our nice Florida weather will return soon.  I am that god

awful humidity is finally gone.  Boy, I hate that.

 

I am glad you had a good Thanksgiving.  We did too.  Our turkey was so

wonderul.  I had the last turkey sandwich today for lunch.  It was yummy!!

 

Take care of yourself, and I hope you are resting a lot.  I am glad your

daughter is doing better.

 

God Bless you Debby, and I pray you will have many pain free days ahead.

 

Love and hugs to you my friend,

 

Barbara

From: BadKneesDebs@ aol.com <BadKneesDebs@ aol.com>

Subject: Re: [ ] newbie

@gro ups.com

Date: Friday, December 4, 2009, 10:07 AM

Good Morning Newbies and dear Friends,

A day of liquid sunshine for us here in So Fla, so a good day to keep up on

mail. I hope that everyone had the happiest of holidays with friends and

families, preferably pain free, which seems to be our biggest challenge. If

managing our pain was just as easy as waiting for the thermometer to pop out of

the turkey!

I wish to welcome all our new friends, but as everyone previously has said, I am

sad for the reason that brings our paths to cross. Usually you only hear from me

after one of my frequent hospital stays for a variety of reasons. However, I

started out at just about the same places that you are at now approximately 15

years ago. My RA affected primarily my knees (TKR on both knees) and my hands.

The problem that I have is that I have been on MTX, Enbrel, Arava, REmicade,

Prednisone, Orencia..... ..have I missed anything???? ?? I have been the patient

that has had ALL the bad side effects (cellulitis, infections from every part of

my body, and then the BIG one, sepsis). The first time I had sepsis, I went into

septic shock, my heart stopped, they had to shock me, inject those drugs into

heart. When my girls came into see me, I was still cold and blue. The patella on

the right knee replacement cracked one day as I was sitting down on the elevated

toilet

seat. The ortho surgeon tried several attempts and different approaches, I was

left with no muscle on the interior aspect of the right leg and incisions that

would not heal due to the prednisone. Months went by and many, many bouts of

sepsis where I was on a vent and not expected to recover and finally my family

and I decided that perhaps I would be better off with a right leg amputation

above the knee. That was done 7/07. Fewer sepsis bouts and not nearly as severe,

but after starting Orencia, I had my first bout of cellulitis. The pain that I

have from the phantom pain, diabetic neuropathy and the RA pain has just been

unbelievable. My rheumy has just kinda stepped out of active duty for me because

he can't prescribe the " designer medications " . He can't even give me Celebrex

due to severe GI bleeding spells. Last year I started complaining about the same

kind of pain in my left knee that I had in my right knee following the fracture.

Well, lucky me,

the patella in the left knee is also fractured. In my situation, they have very

limited because of everything else in my health condition. The rheumy is

refusing to treat any of my pain, so that is falling on my ID doctor. Currently,

she has me on Oxycontin and Percocet for breakthrough pain. I didn't mean for

this to be so long, but this is the reason I am so reluctant to render an

opinion on any of our medications, because I am not the norm,I am the freak.

There was a time when I did get great

relief from Enbrel, but it seems like a lifetime ago and now with everything

else that has happened, I am unable to take any of those goodies any more.

However, this group is better than any medicine any doctor can give you. We

support one another, LISTEN, not just hear you and we have a

Cheese and Whine hour everyday. The " Whine " hour is the best around and most of

us have been to them all! And don't forget I have my wonderful cabana boys that

cater to my every need. Unfortunately, with Ron retiring, I have had to reduce

the number of employees, but I have kept the best of the bunch. Come summertime,

it's Pina Coladas, Margueritas, Bloody s and of course is. Now if this

can't cure us there just ain't no hope for us.....LOL.

I look forward to getting to know you all better. I will keep you in my prayers

and thoughts for pain free days, doctors with a degree in compassion and

laughter which is the best medicine for any disease. Please forgive me for not

responding to questions about the medications, but I don't want to scare anyone!

Gentle, tender,angel hugs to all......... ......... ......... ........

Debs in FL

[ ] newbie

Hi a:

I am sorry that you are suffering so much. Your symptons sounded exactly like

mine when I was struck out of the blue. That was 6 1/2 years ago. I awoke one

morning, could not get out of bed, and in so much pain I could not believe it.

My husband helped me to get up and stand. I could bearly stand and walking was

almost impossible. My hands were so swollen and bent into a claw like postion. I

could not dress myself, get off and on the toilet without help. The next day I

could not feed myself, hold a glass or care for myself. I called my PC, and had

an appt. the next day. I was in agony, and in bed all day. I thought I had a

brain tumor. I told my husband if the doctor can't find out what is wrong with

me, take me to the Cape Cod Hosp. and I will have the dr. put in an intervenious

bag of steroids. It was in the mid of winter, hard snow and very cold. I was on

crutches because I could not walk, and my hands were in so

much pain.

When my dr. walked in he was so shocked to see the state I was in. He said " Oh

my God Barbara, if I didn't know better, I would say you have R.A. " What the

heck is that??? I had never heard of it before. He sent me to an emergency appt.

with a Rheumy. She drew fuild out of my knee, tested it for gold, there was

none, and she felt I had RA. She drew my blood for further tests. She started me

on mega doses of Pred., plus gave me 2 shots. I went home and she called me the

next day to confrim I had RA. So that is when RA reared its ugly head to me. She

started me immediately on MTX. The pills made me so sick, that a few weeks later

she taught me to self inject. each week, which I still do. I looked up RA on my

computer, got so damned scared, I never looked again.

For the last year, I have been in a total medicine induced remission. No

swelling, pain, and no flares. My feet and ankles were hit the hardest, my

wrists, thumbs, and some fingers also. My hips were hit mildly. There were many

days I could not get out of bed, and could hardly stand on my feet or walk. I

used a walker and a cane for stability.

The meds. I take each day are: Sulfasalazine, Placquenil, Pred. ( I have never

been able to get off the Pred.}, and 1 X a week MTX, followed by Leucovorin 12

hrs. later. I take calcium, vit. D daily, and Actonal 1X a week.

How long this remission will last, I do not know, but I am very thankful and

grateful for it.

There is always hope for all of us. My " cocktalil " of meds. finally worked well

for me. We all search for that right " cocktail " of meds. to get us out of all

this pain and suffering.

You have done a good thing for yourself by joining our group. It is the best

thing I have done for myself. Here you will get support, caring, love, help, and

learn so much about this ugly beast " RA " . You can vent here, cry, whine, rant

and rave. We all understand, more than your family and your friends. You can say

what you want, and just know we care and will help you get through this.

I hope you don't have RA, but if you do, it is not the end of the world. My life

has changed due to it, but I am just happy I can do things, maybe a different

way, but I can still do them. I rest everyday, as this is what my Rheumy wants

me to do. I can't shop for hours, but am happy if I can for a few hours. At

least I can do a little bit each time. The hardest thing for me was to learn to

pace myself. This was difficult for me as I did so much each day. I learned the

hard way. If I pushed myself, I would spend the next 3 days trying to recover

from it, and hardly able tro get out of bed. I did finally come to terms with it

all.

It took a long time for my friends to finally get it. The famous words, " You

look fine, healthy, and so beautiful. It can't be as bad as you say. Yes, it is

bad, it is horrible. I quit appologizing because I could not go and go. I felt

so guilty for not going off to lunch, movies, the beach etc. Now, I do what I

can when I can, and if not, I just stay home and care for myself. Period...... .

Wishing you many pain free days ahead. Take care of yourself, and rest as much

as you can. Do not feel bad about it. Your body is fighting the hardest battle

of its life. Resting does help. I hope you get a great Rheumy, who will help you

feel better and try to get you out of your pain and suffering. If you do not

like your Rheumy, search and find the best one for you. I love my Rheumy, and

she is the best dr. and takes such good care of me. You owe it to yourself to

have a wonderful dr.

Hugs,

Barbara

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  • 1 month later...

Hi Debi,

Welcome to the group. I am also 53 and was diagnosed with RA in May 2009 as

well. I have found it very helpful to look through the postings on this board

back several months - it gives me a better understanding of what is going on in

my body and what I can expect from doctors, how others are coping, etc. Also,

posts a lot of helpful articles and links to articles that are really

helpful - some may sound too technical to begin with, but if you keep reading

there is always info for the patient (i.e., " us " ) to understand.

I've been on Methotrexate & Folic Acid since Jun with only fatigue and " brain

fog " for a day or so after the Methotrexate. HOWEVER BIG WARNING, I ran out of

the Folic Acid a couple months ago and forgot to get it refilled - I won't make

that mistake again. I got nauseated and really sick from the Methotexate, so it

really does help to keep the side affects of the Methotrexate down.

If you have specific questions about specific symptoms, side effects, etc.,

people are really great about answering and helping with them.

Ellis

>

> HI-my name is Debi and I am 53. I have been diagnosed with RA and

> fibromyalgia since May 2009. My last visit to the Rheumatologist added

> Methotrexate, Prednisone and Folic Acid. I would welcome information

> and experiences with RA to be shared?

>

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Hi Debi,

Welcome to the group. I am also 53 and was diagnosed with RA in May 2009 as

well. I have found it very helpful to look through the postings on this board

back several months - it gives me a better understanding of what is going on in

my body and what I can expect from doctors, how others are coping, etc. Also,

posts a lot of helpful articles and links to articles that are really

helpful - some may sound too technical to begin with, but if you keep reading

there is always info for the patient (i.e., " us " ) to understand.

I've been on Methotrexate & Folic Acid since Jun with only fatigue and " brain

fog " for a day or so after the Methotrexate. HOWEVER BIG WARNING, I ran out of

the Folic Acid a couple months ago and forgot to get it refilled - I won't make

that mistake again. I got nauseated and really sick from the Methotexate, so it

really does help to keep the side affects of the Methotrexate down.

If you have specific questions about specific symptoms, side effects, etc.,

people are really great about answering and helping with them.

Ellis

>

> HI-my name is Debi and I am 53. I have been diagnosed with RA and

> fibromyalgia since May 2009. My last visit to the Rheumatologist added

> Methotrexate, Prednisone and Folic Acid. I would welcome information

> and experiences with RA to be shared?

>

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Hi Debi:

Welcome to our group.  You have done a great thing for yourself, joining us. 

If you read the post I just sent to , it will tell you about myself and my

RA.  I am sure you will get a great response to your post from our members.

I am very sorry you have RA and Fibro.  Having both must be very painful for

you.  I wish you many pain free days ahead.

Try to rest as much as you can.  It does help.

Again, welcome to our group.

 

Hugs,

 

Barbara

From: debi <sheilacakes@...>

Subject: [ ] Newbie

Date: Sunday, January 24, 2010, 10:55 PM

 

HI-my name is Debi and I am 53. I have been diagnosed with RA and

fibromyalgia since May 2009. My last visit to the Rheumatologist added

Methotrexate, Prednisone and Folic Acid. I would welcome information

and experiences with RA to be shared?

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  • 2 weeks later...

Well, today I broke down and went to the primary MD. He feels it's right

along the RA lines. He did CRP, BMP, RF Latex, ANA.Iron, other things I cant

remember. He wants to see what these tests show, and gave me medrol for a

week. He says if the medrol helps and I feel much better that it's

inflammatory process in the joints. I HATE, did I say hate, well, yes, I

HATE steroids, specifically prednisone, but the medrol is easier tolerated.

I have an appointment with a new rheumatologist in March. He is well

regarded by a friend who has lupus. She had the same result as I did with

the previous rheumy. I am hoping all the tests come back normal, but I have

my suspicions.

Hope everyone is well.and hoping for Spring to come soon!

RN

From: [mailto: ] On

Behalf Of DeNicola-

Sent: Sunday, January 24, 2010 4:08 PM

Subject: [ ] newbie

Hi ,

Welcome to the group. I'm sorry you have to be here. My name is Steph &

I was diagnosed with RA 10 years ago when I was 22. I took doctors 2.5

months to diagnose me. My RF has always tested negative. I do have the

HLA-B27 mutation, which is common in the spondolathropies (AS, Reiter's,

etc). Also, what was your sed rate? Normal is 0-20 and mine at diagnosis was

388 -- it was the only test that made the doctors take me seriously. You may

also want to have your CRP and anti-CCP taken. Have you had Xrays? I know it

feels like you will never feel the same again. If it is RA, early,

aggressive treatment is your best option. Aggressive treatment within a year

of onset gives you the best possibility for remission. I was dx'd in 11/99

and started methotrexate immediately. I started Remicade in March 2000 and

have been in a medication-induced remission ever since. My only meds now are

500mg of Remicade every 6 weeks by IV, 800mcg of folic acid a day & 4

baby aspirin a day.

Take care,

Steph in Virginia

..

<http://geo./serv?s=97359714/grpId=101478/grpspId=1705061610/msgId=

134697/stime=1264370875/nc1=3848640/nc2=5922735/nc3=5733764>

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Hi : I just wanted to welcome you to our group.  I am glad you saw

your PCP, and had all those tests done.  I know you don't want to have any

diseases, but it is better to know then not know.  Then whatever the outcome,

you can deal with it then.  I pray you do not have RA.

 

Take care, and rest as much as you can.  Please let us know whatever the

outcome of your tests are.  We all care.

 

Hugs,

 

Barbara

From: Matlock <matlock5@...>

Subject: RE: [ ] newbie

Date: Friday, February 5, 2010, 6:04 PM

 

Well, today I broke down and went to the primary MD. He feels it's right

along the RA lines. He did CRP, BMP, RF Latex, ANA.Iron, other things I cant

remember. He wants to see what these tests show, and gave me medrol for a

week. He says if the medrol helps and I feel much better that it's

inflammatory process in the joints. I HATE, did I say hate, well, yes, I

HATE steroids, specifically prednisone, but the medrol is easier tolerated.

I have an appointment with a new rheumatologist in March. He is well

regarded by a friend who has lupus. She had the same result as I did with

the previous rheumy. I am hoping all the tests come back normal, but I have

my suspicions.

Hope everyone is well.and hoping for Spring to come soon!

RN

From: @gro ups.com [mailto: @gro ups.com] On

Behalf Of DeNicola-

Sent: Sunday, January 24, 2010 4:08 PM

@gro ups.com

Subject: [ ] newbie

Hi ,

Welcome to the group. I'm sorry you have to be here. My name is Steph &

I was diagnosed with RA 10 years ago when I was 22. I took doctors 2.5

months to diagnose me. My RF has always tested negative. I do have the

HLA-B27 mutation, which is common in the spondolathropies (AS, Reiter's,

etc). Also, what was your sed rate? Normal is 0-20 and mine at diagnosis was

388 -- it was the only test that made the doctors take me seriously. You may

also want to have your CRP and anti-CCP taken. Have you had Xrays? I know it

feels like you will never feel the same again. If it is RA, early,

aggressive treatment is your best option. Aggressive treatment within a year

of onset gives you the best possibility for remission. I was dx'd in 11/99

and started methotrexate immediately. I started Remicade in March 2000 and

have been in a medication-induced remission ever since. My only meds now are

500mg of Remicade every 6 weeks by IV, 800mcg of folic acid a day & 4

baby aspirin a day.

Take care,

Steph in Virginia

..

<http://geo.. com/serv? s=97359714/ grpId=101478/ grpspId=17050616

10/msgId=

134697/stime= 1264370875/ nc1=3848640/ nc2=5922735/ nc3=5733764>

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Hi Jo:  I felt just awful when I read your young daughter was diagnosed with

RA.  I am glad you are going to the RA clinic in your country.  I do know that

it is imperative to start on the RA meds. as soon as possible.  There are some

members here who were diagnosed when they were young, so I am sure they can

answer many of your questions.  I got diagnosed with RA at a late age.  I was

65.  I too was shocked and I did not know one thing about RA.

 

I am glad you joined our wonderful group of caring, loving, and very informed

people.  We will all do our best to answer your questions, and help your

daughter through all this.

 

Please tell her to rest as much as she can, as we all get so tired.  My

thoughts and prayers are with both of you.  I pray she will be pain free

soon.  God Bless both of you.

 

Hugs,

 

 

Barbara

 

From: Jo <j0_cartwright@...>

Subject: [ ] Newbie

Date: Saturday, February 6, 2010, 11:51 AM

 

Hi,

I'm new to the group and to RA. My 15 year old daughter was diagnosed yesterday

with early onset of RA (sero-negative) . We live in Glasgow, Scotland.

I still in shock. The possible diagnosis of RA was only mentioned 2 weeks ago

after taking my daughter to the hospital with pains and swelling in her ankle

joints. Jade had been complaining of aches and pains through her fingers and

wrists for some time but had put this down to operations she'd had 2 years ago

to remove large ganglions from the wrists. The Rhuematologist believes that

these ganglions were the start of RA.

I'm unsure of drug treatments etc at the moment. We haven't been given much

information and are currently awaiting an appointment to attend the the RA

clinic to commence treatment. I have a huge amount of questions and am naturally

worried about how this will affect her in the future given the fact that she's

still so young.

I look forwards to finding out more about you all through the forums

Jo

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Hi jo,

I am so sorry to hear about your daughter. I can kind of relate to what's

going on with her I am 24 and was just diagnosed but started having symptoms

about age 8 and no one could ever give us the right diagnosis. I had multiple

surgeries but with never a decent reason. Its so hard on young people because

you can' t do everything your friends do and they don' t understand. So that is

something she needs to prepare for and the medications can make you very fatigue

so she needs to be sure to rest which is also hard for a young person. I hope

you find a great doctor for her who gets her on a great treatment plan. Let me

know if there are any other questions I can help you with. Best of luck to both

of yall

Vicky

Sent from my Verizon Wireless BlackBerry

[ ] Newbie

Hi,

I'm new to the group and to RA. My 15 year old daughter was diagnosed yesterday

with early onset of RA (sero-negative). We live in Glasgow, Scotland.

I still in shock. The possible diagnosis of RA was only mentioned 2 weeks ago

after taking my daughter to the hospital with pains and swelling in her ankle

joints. Jade had been complaining of aches and pains through her fingers and

wrists for some time but had put this down to operations she'd had 2 years ago

to remove large ganglions from the wrists. The Rhuematologist believes that

these ganglions were the start of RA.

I'm unsure of drug treatments etc at the moment. We haven't been given much

information and are currently awaiting an appointment to attend the the RA

clinic to commence treatment. I have a huge amount of questions and am

naturally worried about how this will affect her in the future given the fact

that she's still so young.

I look forwards to finding out more about you all through the forums

Jo

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Hi, Jo.

I'm so sorry to hear about your daughter's diagnosis.

You are certainly welcome to participate here, but I would also check

out groups specifically for juvenile rheumatoid arthritis, like this

one:

juvenile arthritis/

Adult-onset rheumatoid arthritis differs from juvenile rheumatoid

arthritis in many significant ways.

Not an MD

On Sat, Feb 6, 2010 at 10:51 AM, Jo <j0_cartwright@...> wrote:

>

> Hi,

>

> I'm new to the group and to RA.  My 15 year old daughter was diagnosed

yesterday with early onset of RA (sero-negative).  We live in Glasgow, Scotland.

>

> I still in shock.  The possible diagnosis of RA was only mentioned 2 weeks ago

after taking my daughter to the hospital with pains and swelling in her ankle

joints.  Jade had been complaining of aches and pains through her fingers and

wrists for some time but had put this down to operations she'd had 2 years ago

to remove large ganglions from the wrists.  The Rhuematologist believes that

these ganglions were the start of RA.

>

> I'm unsure of drug treatments etc at the moment.  We haven't been given much

information and are currently awaiting an appointment to attend the the RA

clinic to commence treatment.  I have a huge amount of questions and am

naturally worried about how this will affect her in the future given the fact

that she's still so young.

>

> I look forwards to finding out more about you all through the forums

>

> Jo

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  • 4 months later...
Guest guest

Hi: I just joined this group. I just found out a week ago that I have CML. I

am trying to read and understand as much as possible. I'm 51, married, no

children. I have fibromyalgia so I'm not sure if the pain I'm in is from that

or the CML. I'll start on Tasigna as soon as the pharmacy gets it, I've had my

ekg.

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