Em - Sjogren's

[Guest guest]

Well, Em, unlike fibromyalgia, Sjogren's is an inflammatory disease and

systemic corticosteroids can be appropriate therapy for it depending on

the circumstances. I didn't see you mention Sjogren's in your earlier

posts. How was it diagnosed?

Your PCP is correct; you can have RA without a positive rheumatoid

factor (RF). Some estimates are that as many as 30% of people diagnosed

with RA don't test positive for RF. But Sjogren's can cause symptoms

very similar to RA. It can exist in a primary form or it can be

secondary to RA or other rheumatic diseases (up to 15% of RA patients

may have secondary Sjogren's Syndrome). And fibromyalgia can coexist

with many inflammatory conditions such as RA and Sjogren's. You can

understand how diagnostic confusion occurs.

Here is a link to the Sjogren's Syndrome Foundation:

http://www.sjogrens.com/

You're right. Your improvement after the steroid injections is an

important clue. Some physicians use a course of steroids as a test to

see if an inflammatory condition is at work.

I know all of this probably seems overwhelming, but, if you visit

a's web site (http://rheumatoid.arthritis.freehosting.net/), you can

read a lot about these topics there. If you have any more questions, I

or other members would be glad to try to answer them or send you a link

or two.

[ ] Kenalog and stuff

> At 12:43 PM 07/03/2002 -0500, wrote:

> >Em, Kenalog injections are not appropriate therapy for fibromyalgia.

> >Fibromyalgia is not thought to be an inflammatory condition, and

Kenalog

> >is a corticosteroid used to reduce inflammation.

> >

> >How all of that got started is unclear. Did the rheumatologist

diagnose

> >your fibromyalgia? I'm not sure why it took him so long to come to

the

> >realization that he was treating you inappropriately or that possibly

> >your diagnosis was incorrect or incomplete. It's too bad that he

didn't

> >have the guts to discuss it all with you.

>

> Hmm. I just got a regular shot of Kenalog (gluteal), definitely not a

> specific treatment for one area, but systemic. And it DID help,

although

> I'm not sure even a year ago that I didn't have joint problems as the

root

> cause of everything. This doctor diagnosed me with fibromyalgia and

> Sjogren's. At the time I did not test positive for rheumatoid factor,

and

> I guess he dismissed that. In any case, he never mentioned it. My

current

> PCP has suggested that you can have RA without testing positive.

Steroids

> have ALWAYS helped. I guess it just never occurred to me that that

meant

> my problem wasn't fibromyalgia -- or so I'm starting to suspect now.

>

> >Which doctor had the pneumothorax possibly caused by GERD theory? Do

you

> >have a history of GERD? Do you smoke or have asthma? Again, no need

to

> >answer any of these.

>

> I went to a clinic, because the first bad breathing trouble happened

on a

> Sunday. This doctor -- oh, she was GREAT, I liked her immensely --

> suggested a side-effect of GERD since I have a history of peptic ulcer

> disease, although that's been no problem for a few years now. No

asthma,

> nothing like that.

>

> I confess I'm really pretty startled that the treatment I was getting

last

> year really wasn't appropriate for fibro. I just don't really want to

see

> this doctor again, but here where I live -- Lubbock, Texas -- there

are

> four rheumatologists, and they all are in practice together.

Therefore if

> you've seen one of them you can't see any of the others.

>

> That's giving me some food for thought, though. Because if steroids

helped

> me as much as they did (I would be pain-free, about 80% of the time,

for

> nearly two months after an injection), that speaks to what I may

actually

> have, as opposed to the previous diagnoses. Steroids are a common

> treatment for RA, right? *helpless look* I don't even have a

diagnosis

> yet, and so I havent' been doing as much research as I usually would.

But

> if it helped, then maybe that's a good clue. I better do some

reading.

>

> Thank you, -- this is really thought-provoking.

>

> Best,

> Em