NEW MEMBER

[Guest guest]

welcome, Butty! it is difficult to accept that

only surgery will help. I have just had my

second hip surgery, and was told by two different

doctors, that without total hip replacements, I

would be in a wheel chair. the surgery was not

as difficult as I had anticipated. I am now up

and walking (with a wobble) and looking forward

to the future. the pain of the incisions is

nothing compared to the pain of arthritic

deformed joints.

--- Butty Lumbantoruan <bnauli@...> wrote:

>

> Hello!

>

> I am a new member to this group. I have a

> sister who

> is 32 and live in Indonesia, she has Rheumatoid

> Arthritis for 11 years - since 1993. Her pain

> is in

> her knees, hips, hands. She tried so many

> doctors but

> she still in pain until today. After she got

> married

> in 1998 her condition is getting worse, she had

> to use

> a wheal chair, doctors tell her that it might

> not be

> easy for her to have a baby with her condition.

> In

> 2001 she is using acupuncture, after 8 months

> treatment, miracle happened, she was pregnant

> and able

> to walk again though not too fast. She

> delivered and

> took care the baby with my mother but the pain

> came

> back slowly.. After 8 months delivering a baby,

> she

> was started to feel the pain, and after 1 year

> and 3

> months she is now back to her wheal chair. Now

> her

> condition is worst, not only back to her wheal

> chair,

> she can not use her right hand so she has to

> use her

> left hand to do everything.

>

> I really hope you could help me with the best

> treatment or recommendation as she is getting

> worst

> day by day and I can not see her like that. She

> was

> avoiding surgery that is why she keeps trying

> to have

> other options. Thank you.

>

> Butty

> Indonesia - Jakarta

>

>

>

__________________________________________________

>

[Guest guest]

Hi Butty,

I am sorry your sister is in such a bad way. I have had Rheumatoid Arthritis for about 18 years now.

Does your sister see a Rheumatologist or doctor who specialises in auto immune diseases. She will need the right medication, do you know what she is on at the moment?

Take care, Lynne

[Guest guest]

hi lise my name is sherrie i have hsd ra for about 13 years and have

only had 1 blood test that showed ra factor that was about 3 years

after i was told i had ra so my guess would be to find a rheumy as

you can maybe he or she can give you the answers you are looking

for take care sherrie

>

>

> Hello everyone,

> I am new to this group, my friend told me about this group

and

> suggested that I join. I am a 43 year old female and for several

> years I have been experiencing the same symptoms and problems

> associated with rheumatoid arthritis however, every time that I

have

> been given a blood test for it, I have tested negative. Currently

I

> am undergoing treatment for another flare-up and I questioned my

gp

> about this conflict and he said that it was a rare thing to test

> negative for RA and still have RA. I suffer from so many other

> problems that, if I do not have RA I would not be disappointed

> however, my gp cannot explain why I experience the problems that I

> do that scream RA and respond to the same treatment that someone

> with RA does and still not have RA. My father has suffered with RA

> for as long as I can remember. This dr. has given me a lab order

to

> go get tested again, but I am finding myself arguing about why I

> should even go get the blood test. I am currently taking steroids,

> mobic and ultracet for the joint pain on top of everything else

that

> I take for the spinal disorders that I have. Just so that you have

a

> background on my history, I have had 8 spinal surgeries since

1991,

> 6 of which have been in the last 4 years. I am facing a cervical

> fusion of one of my neck discs within the next two weeks or so. I

> also have osteoporosis, fibromyalgia, scoliosis, kyphosis,and

> degenerative disc disease. I am on long-term disability from my

job

> and am facing a court date with the government's disability judge

as

> soon as I am given a date to appear.

> I would appreciate any and all input and I am happy to have been

> directed to your group. Thanks !

> I pray that God is blessing each of you with a low-pain, high

> spirited day!

> Lise

[Guest guest]

You may have a good GP but he/she doesn't know much about RA. From http://www.arthritisinsight.com/medical/disease/ra/ra.html

"Rheumatoid arthritis may be difficult to diagnose. Many other conditions can resemble it and its symptoms can develop insidiously. Blood tests and x-rays may show normal results for months after the onset of joint pain.According to the American College of Rheumatology, 4 of the following 7 symptoms indicate a diagnosis of rheumatoid arthritis:1. Morning stiffness, lasting for at least an hour, present daily for at least 6 weeks2. Arthritis of 3 or more joints, lasting for at least 6 weeks3. Arthritis of the hand joints, lasting for at least 6 weeks4. Symmetric arthritis, lasting for at least 6 weeks5. Rheumatoid nodules6. Positive rheumatoid factor (blood test)7. Joint changes on x-ray"It is important to note that 20% of the people with RA will never have a positive rheumatoid factor; you can have RA and have a negative rheumatoid factor."

In my opinion a lot more people who are RF negative have RA but, like you, they are not diagnosed with RA. Please get to a rheumatologist. God bless.

----- Original Message -----

From: scorn720

Rheumatoid Arthritis

Sent: Wednesday, November 17, 2004 6:34 AM

Subject: Re: new member

hi lise my name is sherrie i have hsd ra for about 13 years and have only had 1 blood test that showed ra factor that was about 3 years after i was told i had ra so my guess would be to find a rheumy as you can maybe he or she can give you the answers you are looking for take care sherrie> > > Hello everyone,> I am new to this group, my friend told me about this group and > suggested that I join. I am a 43 year old female and for several > years I have been experiencing the same symptoms and problems > associated with rheumatoid arthritis however, every time that I have > been given a blood test for it, I have tested negative. Currently I > am undergoing treatment for another flare-up and I questioned my gp > about this conflict and he said that it was a rare thing to test > negative for RA and still have RA. I suffer from so many other > problems that, if I do not have RA I would not be disappointed > however, my gp cannot explain why I experience the problems that I > do that scream RA and respond to the same treatment that someone > with RA does and still not have RA. My father has suffered with RA > for as long as I can remember. This dr. has given me a lab order to > go get tested again, but I am finding myself arguing about why I > should even go get the blood test. I am currently taking steroids, > mobic and ultracet for the joint pain on top of everything else that > I take for the spinal disorders that I have. Just so that you have a > background on my history, I have had 8 spinal surgeries since 1991, > 6 of which have been in the last 4 years. I am facing a cervical > fusion of one of my neck discs within the next two weeks or so. I > also have osteoporosis, fibromyalgia, scoliosis, kyphosis,and > degenerative disc disease. I am on long-term disability from my job > and am facing a court date with the government's disability judge as > soon as I am given a date to appear. > I would appreciate any and all input and I am happy to have been > directed to your group. Thanks ! > I pray that God is blessing each of you with a low-pain, high > spirited day!> Lise

[Guest guest]

Lise -

Did the doctor run SED/ESR test and CRP test with the Rheumatoid

Factor Test?

In my case, it was a complete accident that my doctors found out I

had RA. I have been suffering since a little girl with pain and

stiffness. Everyone is my family has OA and RA. Anyway, the way

they found out about my RA was because I was having severe allergies--

allergic to everything. My PCP sent me to an allergist who by chance

ran blood test too--my Rheumatoid Factor was positive and high, my

SED rate and my CRP was alarmingly high. He told my PCP to send me

to a Rheumy who reviewed the test and ran another batch (since it was

a couple of weeks later) and my SED rate and CPR rate was through the

roof. But without the blood tests, the rheumy could tell my joints

were swollen--I couldn't wear my watch (and I'm a medium frame

person), I couldn't get my shoes on my feet--I wear a size 8M and I

had to wear my mom's 10M, my clothes were too small--I was completely

drowning in inflammation until I was short of breath.

Even if the Rheumatoid factor is negative, if you have inflammation

and pain the CRP and SED/ESR tests should show how much inflammation.

My rheumy faithfully runs the CRP and SED/ESR tests on me so he can

adjust my meds on a regular basis.

--- In Rheumatoid Arthritis , " Lise " <z0egiri@c...>

wrote:

> Hello everyone,

I am a 43 year old female and for several

> years I have been experiencing the same symptoms and problems

> associated with rheumatoid arthritis however, every time that I

have

> been given a blood test for it, I have tested negative. Currently I

> am undergoing treatment for another flare-up and I questioned my gp

> about this conflict and he said that it was a rare thing to test

> negative for RA and still have RA.

[Guest guest]

Thank you very much for this information, I am going to print it and talk to my GP about it. I am going to ask that he consider sending me to a rheumatologist for an evaluation. What I know so far, I have 5 of the 7 symptoms that indicate the presence of rheumatoid arthritis. Thanks again for your time and information, God bless one and all.

Lise

-------------- Original message --------------

You may have a good GP but he/she doesn't know much about RA. From http://www.arthritisinsight.com/medical/disease/ra/ra.html

"Rheumatoid arthritis may be difficult to diagnose. Many other conditions can resemble it and its symptoms can develop insidiously. Blood tests and x-rays may show normal results for months after the onset of joint pain.According to the American College of Rheumatology, 4 of the following 7 symptoms indicate a diagnosis of rheumatoid arthritis:1. Morning stiffness, lasting for at least an hour, present daily for at least 6 weeks2. Arthritis of 3 or more joints, lasting for at least 6 weeks3. Arthritis of the hand joints, lasting for at least 6 weeks4. Symmetric arthritis, lasting for at least 6 weeks5. Rheumatoid nodules6. Positive rheumatoid factor (blood test)7. Joint changes on x-ray"It is important to note that 20% of the people with RA will never have a positive rheumatoid factor; you can have RA and have a negative rheumatoid factor."

In my opinion a lot more people who are RF negative have RA but, like you, they are not diagnosed with RA. Please get to a rheumatologist. God bless.

----- Original Message -----

From: scorn720

Rheumatoid Arthritis

Sent: Wednesday, November 17, 2004 6:34 AM

Subject: Re: new member

hi lise my name is sherrie i have hsd ra for about 13 years and have only had 1 blood test that showed ra factor that was about 3 years after i was told i had ra so my guess would be to find a rheumy as you can maybe he or she can give you the answers you are looking for take care sherrie> > > Hello everyone,> I am new to this group, my friend told me about this group and > suggested that I join. I am a 43 year old female and for several > years I have been experiencing the same symptoms and problems > associated with rheumatoid arthritis however, every time that I have > been given a blood test for it, I have tested negative. Currently I > am undergoing treatment for another flare-up and I questioned my gp > about this conflict and he said that it was a rare thing to test > negative for RA and still have RA. I suffer from so many other > problems that, if I do not have RA I would not be disappointed > however, my gp cannot explain why I experience the problems that I > do that scream RA and respond to the same treatment that someone > with RA does and still not have RA. My father has suffered with RA > for as long as I can remember. This dr. has given me a lab order to > go get tested again, but I am finding myself arguing about why I > should even go get the blood test. I am currently taking steroids, > mobic and ultracet for the joint pain on top of everything else that > I take for the spinal disorders that I have. Just so that you have a > background on my history, I have had 8 spinal surgeries since 1991, > 6 of which have been in the last 4 years. I am facing a cervical > fusion of one of my neck discs within the next two weeks or so. I > also have osteoporosis, fibromyalgia, scoliosis, kyphosis,and > degenerative disc disease. I am on long-term disability from my job > and am facing a court date with the government's disability judge as > soon as I am given a date to appear. > I would appreciate any and all input and I am happy to have been > directed to your group. Thanks ! > I pray that God is blessing each of you with a low-pain, high > spirited day!> Lise

[Guest guest]

The blood tests that I had done were whatever is included in an Arthritis Profile, I know that RF, ESR, Uric acid, ANA and ASO tests are included in that, I don't know about a CRP test. I have never had a ESR show as "high" only slightly elevated. Would being on steroids affect that level? When I went to see the dr. this last time, like he normally does, he gave me an injection of steroids and by the next day I could tell a significant reduction in the swelling that I had. He also gave me a course of steroids taken via the medrol dose pack. If this translates to the blood work then the ESR would now be normal or only slightly high at this point wouldn't it? And then wouldn't it be a waste of time to go get the blood work done at this point? Shouldn't I get blood work done before any steroids etc are introduced? It makes sense to me, but I am just a lay person so that's why I am asking those of you who have more experience with this.

Thank you for your time and direction in this for me. may God bless us all,

Lise

-------------- Original message -------------- Lise -Did the doctor run SED/ESR test and CRP test with the Rheumatoid Factor Test? In my case, it was a complete accident that my doctors found out I had RA. I have been suffering since a little girl with pain and stiffness. Everyone is my family has OA and RA. Anyway, the way they found out about my RA was because I was having severe allergies--allergic to everything. My PCP sent me to an allergist who by chance ran blood test too--my Rheumatoid Factor was positive and high, my SED rate and my CRP was alarmingly high. He told my PCP to send me to a Rheumy who reviewed the test and ran another batch (since it was a couple of weeks later) and my SED rate and CPR rate was through the roof. But without the blood tests, the rheumy could tell my joints were swollen--I couldn't wear my watch (and I'm a medium frame person), I couldn't get my shoes on my feet--I wear a size 8M and I had to wear my mom's 10M, my clothes were too small--I was completely drowning in inflammation until I was short of breath.Even if the Rheumatoid factor is negative, if you have inflammation and pain the CRP and SED/ESR tests should show how much inflammation.My rheumy faithfully runs the CRP and SED/ESR tests on me so he can adjust my meds on a regular basis.> Hello everyone,I am a 43 year old female and for several > years I have been experiencing the same symptoms and problems > associated with rheumatoid arthritis however, every time that I have > been given a blood test for it, I have tested negative. Currently I > am undergoing treatment for another flare-up and I questioned my gp > about this conflict and he said that it was a rare thing to test > negative for RA and still have RA.

[Guest guest]

I can't speak for the others members on the group, and you have to

take into consideration there are approximately 250 different types

of arthritis, but in my case, it took my doctor 8 years to get my RA

under control and with the cocktail he has me on now (plaquenil,

prednisone, bextra, humira, methotrexate--which I just lost due to

the shortage of supply), my SED rate is always out of whack and never

close to normal, but better than where I started--my baseline

marker. Kind of like a diabetic--no matter how much you control your

blood sugars, your still a diabetic and never have the same lab

results like a person without diabetes. (Don't mean to offend

anyone, my mom is a diabetic).

The CRP test (C-Reactive Protein test) is used when testing for RA

and lupus. It with the ESR test, tests how much inflamation you have

in your body; as the inflammation leaves your body, this number

should go down and that means your body is responding to the

treatment prescribed. The ESR test erythrocyte sedimentation rate

(ESR) shows how much inflammation is hanging in your blood and does

not react as quickly to treatment--so it gives a longer snapshot of

inflammation. However, CRP tests appears and then disappears or

adjusts sooner than changes in the ESR. Thus, your CRP level may fall

to normal if you have been treated successfully, such as for a flare-

up of arthritis, but your ESR may still be abnormal for a while

longer.

If my CRP spikes then my rheumy will give me a dose pack of

prednisone and current my cocktail. But if both, the ESR and the CRP

spike really high (on occasion) then he will give me the dose pack

and call me in to adjust my meds.

Hope this helps!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I have never had a ESR show as " high " only slightly elevated. Would

being on steroids affect that level? If this translates to the blood

work then the ESR would now be normal or only slightly high at this

point wouldn't it? And then wouldn't it be a waste of time to go get

the blood work done at this point? Shouldn't I get blood work done

before any steroids etc are introduced? Thank you for your time and

direction in this for me.

> may God bless us all,

> Lise

[Guest guest]

I started off with an ESR of about 90 and my RD gave me 40 mg Prednisone daily. It took me about 6 months to get down to 20 mg daily at which time my ESR was about 80. Now over 2 years later I am off Prednisone and still have an ESR of about 50. The corticosteroids and the RA medicines work toward reducing the ESR but they are not magic. I started out with about half of my blood work out of normal limits and now only about one-tenth of it is out of limits and almost all of that is coming toward normal. Blood work is an indication of how things are going but it does not have to be normal for things to be well controlled. God bless.

----- Original Message -----

From: z0egiri@...

Rheumatoid Arthritis

Sent: Wednesday, November 17, 2004 10:36 AM

Subject: Re: Re: new member

The blood tests that I had done were whatever is included in an Arthritis Profile, I know that RF, ESR, Uric acid, ANA and ASO tests are included in that, I don't know about a CRP test. I have never had a ESR show as "high" only slightly elevated. Would being on steroids affect that level? When I went to see the dr. this last time, like he normally does, he gave me an injection of steroids and by the next day I could tell a significant reduction in the swelling that I had. He also gave me a course of steroids taken via the medrol dose pack. If this translates to the blood work then the ESR would now be normal or only slightly high at this point wouldn't it? And then wouldn't it be a waste of time to go get the blood work done at this point? Shouldn't I get blood work done before any steroids etc are introduced? It makes sense to me, but I am just a lay person so that's why I am asking those of you who have more experience with this.

Thank you for your time and direction in this for me. may God bless us all,

Lise

-------------- Original message -------------- Lise -Did the doctor run SED/ESR test and CRP test with the Rheumatoid Factor Test? In my case, it was a complete accident that my doctors found out I had RA. I have been suffering since a little girl with pain and stiffness. Everyone is my family has OA and RA. Anyway, the way they found out about my RA was because I was having severe allergies--allergic to everything. My PCP sent me to an allergist who by chance ran blood test too--my Rheumatoid Factor was positive and high, my SED rate and my CRP was alarmingly high. He told my PCP to send me to a Rheumy who reviewed the test and ran another batch (since it was a couple of weeks later) and my SED rate and CPR rate was through the roof. But without the blood tests, the rheumy could ! tell my joints were swollen--I couldn't wear my watch (and I'm a medium frame person), I couldn't get my shoes on my feet--I wear a size 8M and I had to wear my mom's 10M, my clothes were too small--I was completely drowning in inflammation until I was short of breath.Even if the Rheumatoid factor is negative, if you have inflammation and pain the CRP and SED/ESR tests should show how much inflammation.My rheumy faithfully runs the CRP and SED/ESR tests on me so he can adjust my meds on a regular basis.> Hello everyone,I am a 43 year old female and for several > years I have been experiencing the same symptoms and problems > associated with rheumatoid arthritis however, every time that I have > been given a blood test for it, I have tested negative. Currently I > am undergoing treatment for another ! flare-up and I questioned my gp > about this conflict and he sa id that it was a rare thing to test > negative for RA and still have RA.

[Guest guest]

my question is what is esr i would really like to know i dont think

my doctor has ever sone that test on me sherrie

>

> > Hello everyone,

> I am a 43 year old female and for several

> > years I have been experiencing the same symptoms and

problems

> > associated with rheumatoid arthritis however, every time

that I

> have

> > been given a blood test for it, I have tested negative.

Currently I

> > am undergoing treatment for another ! flare-up and I

questioned my gp

> > about this conflict and he sa id that it was a rare thing to

test

> > negative for RA and still have RA.

>

>

>

>

>

>

>

[Guest guest]

*An ESR or erythrocyte sedimentation rate is a nonspecific screening test for various inflammatory diseases. The test measures the distance (in millimeters) that red blood cells settle in unclotted blood toward the bottom of a specially marked test tube in 1 hour.

* Courtesy of AOL medical definitions

Hope this helps! Have a great day! Lise

-------------- Original message -------------- my question is what is esr i would really like to know i dont think my doctor has ever sone that test on me sherrie> > > Hello everyone,> I am a 43 year old female and for several > > years I have been experiencing the same symptoms and problems > > associated with rheumatoid arthritis however, every time that I > have > > been given a blood test for it, I have tested negative. Currently I > > am undergoing treatment for another ! flare-up and I questioned my gp > > about this conflict and he sa id that it was a rare thing to test > > negative for RA and still have RA. > > > > > > >

[Guest guest]

To me an elevated ESR or SED rate means that you have some kind of inflammation somewhere in your body so that you might benefit from some medicine if you can find the right kind and the right dose. It is just one of many clues from tests, examination and history that help our doctors decide how to treat us. It is not something to be treated in itself but is a clue that something else needs to be treated. God bless.

----- Original Message -----

From: scorn720

Rheumatoid Arthritis

Sent: Friday, November 19, 2004 5:28 AM

Subject: Re: new member

my question is what is esr i would really like to know i dont think my doctor has ever sone that test on me sherrie> > > Hello everyone,> I am a 43 year old female and for several > > years I have been experiencing the same symptoms and problems > > associated with rheumatoid arthritis however, every time that I > have > > been given a blood test for it, I have tested negative. Currently I > > am undergoing treatment for another ! flare-up and I questioned my gp > > about this conflict and he sa id that it was a rare thing to test > > negative for RA and still have RA. > > > > > > >

[Guest guest]

My rheumy feels that CRP(C-Reative Protein) is more definitive for inflammation that a SED rate -- at least in my case. I have had RA for 12 years; my SED rate was at a high of 78 when I was first diagnosed but it is now normal. However, my CRP is slightly elevated and apparently I have some symptoms known only to him which coincide with my elevated CRP. He added Remicade to my already huge group of drugs and my CRP is starting to come down. Apparently CRP can be used to detect many different problems but the MD has to request which panel he wants run.

Pat

----- Original Message -----

From: Harold Van Tuyl

Rheumatoid Arthritis

Sent: Friday, November 19, 2004 11:20 AM

Subject: Re: Re: new member

To me an elevated ESR or SED rate means that you have some kind of inflammation somewhere in your body so that you might benefit from some medicine if you can find the right kind and the right dose. It is just one of many clues from tests, examination and history that help our doctors decide how to treat us. It is not something to be treated in itself but is a clue that something else needs to be treated. God bless.

[Guest guest]

Do you think when your ESR or SED rate is elevated that penicillen

would be better than Prednisone? The disadvantage steroid has is it

makes you gain weight.........Joyce

----- Original Message -----

From: Harold Van Tuyl

Rheumatoid Arthritis

Sent: Friday, November 19, 2004 10:20 AM

Subject: Re: Re: new member

To me an elevated ESR or SED rate means that you have some kind of inflammation somewhere in your body so that you might benefit from some medicine if you can find the right kind and the right dose. It is just one of many clues from tests, examination and history that help our doctors decide how to treat us. It is not something to be treated in itself but is a clue that something else needs to be treated. God bless.

----- Original Message -----

From: scorn720

Rheumatoid Arthritis

Sent: Friday, November 19, 2004 5:28 AM

Subject: Re: new member

my question is what is esr i would really like to know i dont think my doctor has ever sone that test on me sherrie> > > Hello everyone,> I am a 43 year old female and for several > > years I have been experiencing the same symptoms and problems > > associated with rheumatoid arthritis however, every time that I > have > > been given a blood test for it, I have tested negative. Currently I > > am undergoing treatment for another ! flare-up and I questioned my gp > > about this conflict and he sa id that it was a rare thing to test > > negative for RA and still have RA. > > > > > > >

[Guest guest]

I don't realy know about medicines but I think Penicillin is used for infection and Corticosteroids are used for inflammation. I don't really know the difference but I hope the doctors do.

----- Original Message -----

From: Joyce McCrary

Rheumatoid Arthritis

Sent: Friday, November 19, 2004 3:27 PM

Subject: Re: Re: new member

Do you think when your ESR or SED rate is elevated that penicillen

would be better than Prednisone? The disadvantage steroid has is it

makes you gain weight.........Joyce

----- Original Message -----

From: Harold Van Tuyl

Rheumatoid Arthritis

Sent: Friday, November 19, 2004 10:20 AM

Subject: Re: Re: new member

To me an elevated ESR or SED rate means that you have some kind of inflammation somewhere in your body so that you might benefit from some medicine if you can find the right kind and the right dose. It is just one of many clues from tests, examination and history that help our doctors decide how to treat us. It is not something to be treated in itself but is a clue that something else needs to be treated. God bless.

----- Original Message -----

From: scorn720

Rheumatoid Arthritis

Sent: Friday, November 19, 2004 5:28 AM

Subject: Re: new member

my question is what is esr i would really like to know i dont think my doctor has ever sone that test on me sherrie> > > Hello everyone,> I am a 43 year old female and for several > > years I have been experiencing the same symptoms and problems > > associated with rheumatoid arthritis however, every time that I > have > > been given a blood test for it, I have tested negative. Currently I > > am undergoing treatment for another ! flare-up and I questioned my gp > > about this conflict and he sa id that it was a rare thing to test > > negative for RA and still have RA. > > > > > > >

[Guest guest]

Hi Suz,

Welcome, there is a wealth of support, experience and information in

this group. What kind of help or orientation do you need? You

didn't tell us anything about your condition.

I've had RA for 2 yrs. and am presently on a host of meds. I've

been a member of this group for almost 2 years and it is one of the

best things I did for myself.

Best Wishes,

Jay

>

>

> Hi there,

>

> I am a new member to the group! I think I need some orientation -

> help!

>

> Thanks

> SW

[Guest guest]

s264w <suzward05@...> wrote:

Hi there,I am a new member to the group! I think I need some orientation - help! ThanksSWWellcome SW,

hope you find what you need or at least something that helps a lot ! !

later __________________________________________________

[Guest guest]

Hi Jeannie:

Welcome to the group and sorry you have to be here. You may want to rethink your refusal of prednisone, unless of course you know you will have a really bad reaction to it. Many times prednisone is the only drug that really just stops the pain and inflammation immediately (at least with me) and it might just help you get through the initial pain. All the other drugs take a while to kick in. You can always taper off the prednisone (although it's hard to get off) as needed, or if you do have a bad reaction to it.

I think most rheumies these days try and treat the RA aggressively - I think you are right to insist on it. Good luck to you.

gloria

[Guest guest]

Welcome to our group, Jeannie! I am similar to you in your feelings on Pred and

MTX and I do believe Enbrel and Humira are effective and most aggressive. For

me,

the benefits outweigh the risks, but you should do the research. Humira has put

me

in almost complete remission. However, not everyone can take these drugs, you

just

have to see if you can tolerate it.

Good luck,

>

>

> Hi, Everyone....I am an RN in NYS, recently diagnosed w/ RA. I've had

> OA for quite some time and had L 4-5 removed a few years ago with

> great success. I've been in a lot of pain lately. My first appt w/ a

> Rheum is 4/12. At this point I want it treated aggressively. I'm

> willing to take Enbrel and Sulfasalazine, but not prednisone or MTX.

> Any thoughts or comments on any of these meds would be appreciated.

> I'm 41 now and raising my 8 year-old completely on my own...I would

> like to keep working for a long time...as long as possible. Smiles to

> all, Jeannie.

[Guest guest]

While both Prednisone and Methotrexate can have bad side effects, they can also be the best medicine for permitting a person to function. The bad side effects are unlikely and most of them are reversed when the medication is stopped. On the other hand, joint damage is permanent and no known way to reverse it. When I first got RA I was bedridden till I started taking 40 mg Prednisone. I tried Arava, replaced that with Methotrexate, and then added Remicade at 3 mg/kg. Finally about a year and a half after getting RA I was able to get off Prednisone when the Remicade was increased to 6 mg/kg. I had some slight problems with Prednisone but I found it much better than being bedridden. Methotrexate is unlikely to have bad side effects at the doses usually used for RA but is much worse at the higher doses usually used for cancer.

Whatever you decide I hope you have success in treating your RA. God bless.

----- Original Message -----

From: jmcrn2b

Rheumatoid Arthritis

Sent: Tuesday, March 29, 2005 4:02 AM

Subject: New Member

Hi, Everyone....I am an RN in NYS, recently diagnosed w/ RA. I've had OA for quite some time and had L 4-5 removed a few years ago with great success. I've been in a lot of pain lately. My first appt w/ a Rheum is 4/12. At this point I want it treated aggressively. I'm willing to take Enbrel and Sulfasalazine, but not prednisone or MTX. Any thoughts or comments on any of these meds would be appreciated. I'm 41 now and raising my 8 year-old completely on my own...I would like to keep working for a long time...as long as possible. Smiles to all, Jeannie.

[Guest guest]

Unfortunately I have another medical condition that precludes use of MTX. Prednisone is a last resort med for me...luckily the pain is not that bad...yet. I've been reading the postings and everyone seems so supportive and knowledgeable. I'm sure this RA has been brewing for some years now....but I literally woke up one morning with one stiff and swollen finger...in the next couple of weeks it spread to all fingers bilaterally. It also seems like I've developed Raynaud's symptoms along with it...the cold weather suddenly causes serious pain and redness to my hands...anyone else experience this?gloriarex@... wrote:

Hi Jeannie:

Welcome to the group and sorry you have to be here. You may want to rethink your refusal of prednisone, unless of course you know you will have a really bad reaction to it. Many times prednisone is the only drug that really just stops the pain and inflammation immediately (at least with me) and it might just help you get through the initial pain. All the other drugs take a while to kick in. You can always taper off the prednisone (although it's hard to get off) as needed, or if you do have a bad reaction to it.

I think most rheumies these days try and treat the RA aggressively - I think you are right to insist on it. Good luck to you.

gloria__________________________________________________

[Guest guest]

Yep - that describes me too - I'm sure sorry that it's happened to you too

Love - kins

-------Original Message-------

From: jeannie curvo

Date: 04/05/05 04:58:18

Rheumatoid Arthritis

Subject: Re: New Member

Unfortunately I have another medical condition that precludes use of MTX. Prednisone is a last resort med for me...luckily the pain is not that bad...yet. I've been reading the postings and everyone seems so supportive and knowledgeable. I'm sure this RA has been brewing for some years now....but I literally woke up one morning with one stiff and swollen finger...in the next couple of weeks it spread to all fingers bilaterally. It also seems like I've developed Raynaud's symptoms along with it...the cold weather suddenly causes serious pain and redness to my hands...anyone else experience this?gloriarex@... wrote:

Hi Jeannie:

Welcome to the group and sorry you have to be here. You may want to rethink your refusal of prednisone, unless of course you know you will have a really bad reaction to it. Many times prednisone is the only drug that really just stops the pain and inflammation immediately (at least with me) and it might just help you get through the initial pain. All the other drugs take a while to kick in. You can always taper off the prednisone (although it's hard to get off) as needed, or if you do have a bad reaction to it.

I think most rheumies these days try and treat the RA aggressively - I think you are right to insist on it. Good luck to you.

gloria

__________________________________________________

[Guest guest]

I AM A NEW MEMBER......MY NAME IS CATHY

I WAS TOLD THAT I HAVE AN AUTO-IMMUNE CONDITION CALLED CIDP

If the immune system fights the peripheral nerves by mistake, the

individual nerve fibres become inflammed and stop working properly.

Because the nerves to the feet and hands are the longest, the first

symptoms of GBS and CIDP are usually felt first in the limbs. These

symptoms are weakness (motor nerves) and pins and needles (sensory

nerves).

As the illness progresses and more damage is done to the nerves, the

symptoms appear to move up the limbs. Sometimes weakness becomes

paralysis and the pins and needles can become very painful.

If this all happens in a short period, the illness is acute and

called GBS. If it happens over a long period, the illness is chronic

and called CIDP.

IT HAS MADE MY LIFE VERY DIFFICULT SINCE THE ONSET IN SEPTEMBER OF

2006.......MY LIFE IS GOING THROUGH A LOT OF LOSES AND I AM VERY MUCH

AFRAID OF BEING ON MY OWN.

I have been working on my recovery but it has been going very

slow.....I have not made much improvement since I left MASS MY

HOMESTATE in November......Both my parents and I had thought when I

was in Mass that I would be able to return by Spring. We most

recently spoke with the best doctor who knows a lot about CIDP and it

looks as though my recovery is going to be more like years. That was

hard to accept but I have been reminded that I am special, courageous

and I will be able to get through this! I also finished PUTTING ALL

OF MY FRIENDS SUPPORTIVE WORDS ON my Gait belt and I have all of your

support with me during my Rehab. Speaking of Rehab....I got the

insurance company to pay for my Rehab that I have had since the

beginning of the year....plus to save money I am switching to a

wellness program at Rehab. I will work with a trainer instead of a

therapist......instead of paying $200 an hour I will only have to pay

$40 an hour. I just got my 401K released to me to pay for medical

costs. So I can pay for some of the medical equipment that I need.

Plus I found a local clinic to go to for a primary and I am on a

waiting list for a Jewish family services therapy clinic. I went to a

specialist for the sleep apnea problem and found out that I do have

it and the steroids is causing it to be worse and that the insurance

will not pay for the testing and visit. So I paid for the visit

almost $300 and decided not to go through with the sleep lab and

testing because it would be over $3000 and I spent $800 on the c-pap

and if things get worse with my breathing then we will deal with it

and go to the hospital. Well I don't go back to my neurologist until

the middle of next month....we will talk about the next treatment for

me. It looks as though I will be taking some other medication along

with the steroids. Mostly I have to continue doing my exercises so

that I don't get weaker. The hard part is walking with my walker

without falling to the floor because then I can't get up on my own. I

need to keep a phone with me at all times. I am feeling very

challenged about this recovery. I really have never liked to

exercise , rest or take pills and these are the three most important

things I have to do daily to have a successful recovery.

I wanted to share with you some of my daily challenges

going to the bathroom without accidents

washing and showering

walking and bending over without falling

fixing and eat meals and drinks without making a spill or getting

hurt or burnt

write or type without writing large or making mistakes

helping out with chores is something I wish I could do but i can't

going out of the house without support

taking medication without help opening and putting meds in a cup

I was so excited to get this laptop because I really thought I would

be able to stay in touch with my kids daily or more often . I was

wrong they are so busy all the time and I try to send them messages

but they are more involved with school stuff and their friends. So I

asked them to try and call me once a week....but they never

remember....so I try and call them but again they are either to busy

when I call or sleeping. When I do get a chance to check in them they

seem to all be doing well in school. Plus they are ok with staying

together with their father. Jake MY OLDEST is doing well with his

first year at college at STCC. A YEAR YOUNGER just got his

drivers license and is starting his third year of Lacrosse, he his

playing goalie. Katy is finishing her second year of Jr high and is

13 now. She spends a lot of time with the girls on her cheer leading

team. Unfortunately I have not been able to see my kids since

November......I can't do any flying right now and the kids are not

allowed to come to see me in Florida BECAUSE THERE DAD WON'T LET

THEM. So we will just have to wait until I recover OR I GET

VISITAIONS THROUGH THE COURT SYSTEM.

I finally got together with My brother Tom and his family to

celebrate Xmas. We tried to get together with my brother Mike and his

family for the holidays. But my sister-in-law was in the hospital

over Xmas and New Years. Finally we were both well enough to get

together. We had a great Italian seafood feast and wonderful

breakfast brunch. We did some late Xmas shopping....I got my HAPPY

perfume that I usually get myself with the support of my lovely

ladies I work with and Curtis Blake Day School. I cried when they

arrived and when they left but that was because it was so nice to be

able to spend time together.

Mostly I am so lucky and blessed to have two parents that are willing

to help take really good care of me. They are always trying to plan

fun things for us to do. They take me to the farmer's markets in town

and to the grocery stores were I get to use electric carts...LOL. I

went with my Dad to a Spring Training Baseball game with the

Cardinals and the Blue Jays this week. I had never been to a game it

was a lot of fun! They want to plan a trip to Busch Gardens with

another CIDP friend that I meet on-line who lives in the area. Plus

they would like to take me on a week long cruise when I am up to it.

So I have to say that my Parents are my saving miracle to help me

through my recovery.

I applied for me and my daughter to have Emergency Handicap Housing

through The East Longmeadow Housing Authority IN MY HOMETOWN and they

accepted my application. Now I am on a waiting list the wait could be

up to three years I have been told. I want to hear a lot sooner from

them . I would also like to be back to work but it is really hard at

this point to tell how long of a day I could handle or how helpful I

could be. I applied for a summer job at my favorite vacation place in

Maine, Ferry Beach.....but it is really hard to say how I will be in

June when the job starts or if they may be willing to deal with me

and my disability. I choose it to try and work first because I know

it is a safe place and has handicap accessibility. I wonder how

things will be for me or if I will ever be able to drive again.

I have been on-line with CIDP support groups and talked with others

with CIDP about how they have dealt with it. It is very helpful to

find out what treatments have worked and how long their recovery was.

It is interesting because everyone is so different and different

treatments work for different people. Some can do just about

everything again but others need to stay in wheelchairs forever. Even

though it is a rare condition I am finding people who do have it

around me, my mother's friends' husband, a roommate in Sarasota

Memorial Hospital and a women at Rehab. I just goes to show you what

a small world it is.

Well Bowling Tournament and Mass Women's Bowling Annual Meeting time

is upon us and I will not be able to participate this year or get my

award for my First Place in person but I hope that someday I can go

to a bowling alley to see just what I can do! I do believe in

miracles because My Favorite roll-model let me know that her team got

second place in her division. I am so proud of them!

Chronic inflammatory demyelinating polyneuropathy (CIDP) is a disease

of the peripheral nerves, i.e. nerves outside the brain and spinal

cord. Demyelination is the degeneration of the fatty insulation

covering the nerves (the myelin sheath). Polyneuropathy refers to the

fact that several nerves are affected.

CIDP affects nerve fibres controlling muscle movement (motor

function), sensory information and sometimes autonomic functions

(over which one has no voluntary control), such as heartbeat and

digestion. The disease is symmetrical, meaning that it occurs on both

sides of the body. It may be slowly progressive or follow a pattern

of relapses and remissions. There is also an acute form, known as

Guillain-Barré syndrome (acute inflammatory demyelinating

polyneuropathy, AIDP). Although symptoms are similar, Guillain-Barré

syndrome can be distinguished from CIDP by its rapid progression.

Patients with the syndrome tend to recover within 6-12 months, while

CIDP is a chronic disorder.

How is CIDP Treated?

Several treatment options are available. Drug treatment suppresses

the autoimmune reaction and decreases inflammation. The treatment is

carried out in two steps. The first approach has often been found

helpful. High dose of intravenous immune globulins (IVIG),

{I was given this when I first went into the hospital and told I had

CIDP. I have had four other treatments since then.}

protective blood proteins obtained from healthy volunteers, This

makes it very expensive. can be readily given through an arm vein. Or

another treatment, called plasma exchange (PE), or plasmapheresis,

{This is the next treatment thay want to have me try.}

some of the patient's blood is removed and the blood cells returned

without the liquid plasma portion of the patient's blood. It may work

by removing harmful antibodies contained in the plasma. For patients

unresponsive to steroids and immunoglobuline therapy, blood plasma

exchange (plasmapheres) may be a viable option. The planning and

implementation of plasmapheres is complex, as the procedure requires

access to a dialysis unit. The effects only last between 3 and 6

weeks and treatment should therefore be repeated regularly.

Plasmapheres is not universally recommended owing to the risk of

cardiovascular side effects, especially in elderly patients. The

second treatment course aims to promote long-term stabilisation of

the condition (adjuvant therapy). Prednisone, similar to protective

anti-inflammatory corticosteroids that are normally made by the body,

may be used as the second step of the treatment for several reasons.

It often improves strength, can be conveniently taken by mouth and is

inexpensive. Side effects can limit its use. Some side effects such

as inhibited growth, decreased bone density (osteoporosis), muscle

weakness, psychological problems, developing diabetes, gastric

ulcers, high blood pressure, gaining weight and moon face are just a

few.

{I have been on this medication since November. It has made me

stronger. Of course it has caused many different side effeccts. I was

told it is important not to stay on it to long and to lower the dose

as you go off it. }

Treatment of CIDP is somewhat of an art. If steroid therapy,

immunoglobulin treatment fail, a number of immunosuppressive drugs

can be tried {

This is the other NEW treatment they are going to also try on me. I

have been told that it takes five months before it has any effect.}

(for example chemotherapy or drugs for transplantation patients).

The advantage of long-term chemotherapy is a reduced risk of

recurring episodes or permanent disability. Drugs including

cyclophosphamide, cyclosporine A, and mycophenalate work well as

supplementary treatments to stabilise the condition. However, as

experience of these medications is still limited they are used

restrictively in order to minimise the risk of serious adverse

effects.

{ I will need to be watched closely and get blood work done regularly

to find out if my body is absorbing the medications correctly.}

If a patient shows good improvement with an initial treatment but

again evolves weakness it may be repeated or another therapy may be

tried.

I AM SORRY I HAVE SUCH A LONG POST...BUT IT MAKES ME FEEL BETTER

EACH TIME I TELL MY STORY.....I REALLY AM IN NEED OF SOME HEALING

PRAYERS LATELY.....PLUS I HAVE SOME VERY DIFFICULT LIFE CHOICES TO

MAKE. THANK YOU FOR YOUR SUPPORT!