Hello.
I am new to this forum. It has bee a very hard and painful road and i still have no answers. Although my rheumatoid factor is normal, i have developed some sort of systemic chronic tendonitis...i have tendonitis in basically every tendon there is to have it in. Although there is no visible swelling, MRIs show bone marrowo edema, joint effusions, and tendinitis, so my rheumy has put me on azulfidine. All blood work, ANA, Sed rate, the works, is normal. She thinks i have reactive arthritis to some sort of infection. Part of the diagnosis is based on my miraculous response to prednsione, which took away almost all my pain overnight. Now it is all back, since the dose was high and i had to taper down.
This has been so hard. I have given up all my activities other than working full time as a special ed teacher. can't give that up. I used to run 20 miles a week, and now i am lucky if i can walk a mile. All activities hurt, all movement hurts. My hamstrings, biceps tendons, achilies tendons, tendons in neck, back, muscles along spine, and tennis elbow in both arms as well as plantar/palmar fasciitis all accompany this. I do not have flares, just constant pain that does not cease ever. I am only 34 years old and for the life of me have no idea what triggered this. I hurt from my neck right on down to the soles of my feet. I have been to so many doctors and i finally found one who was willing to think outside of the box and is treating me for seronegative spondyloarthropathy. I have even been treated for lyme despite a negative test result (4 of them actually).
I also have incessant clicking and snapping in all of my tendons whenever i move. Does anyone else have these types of symptoms. Again, i knwo i do nto have RA but i dont' seem to ahve anything that has a name, so wondering if anyone else is in the same boat.
I was also wondering if anyone else is on azulfidine. It supposedly takes a long time to work, 3 months. I am on week 7. Any comments very welcome. thank you in advance.
Regards,
Ali
WELCOME TO AI...ALI
I keep thinking about the possibility of Fibromyalgia...I know that when a person has Fibro they hurt all over their bodies, also Lupus.. it effects the muscles fibers and tendons.
I hope that you will get a DX soon. It will make you feel better to at least have a name as to why you are feeling so bad.
I put some links for some information for you to look into. I hope that they may help you.
http://www.lupus.org/education/brochures/jointpain.html
Once again Welcome to AI and we hope you will enjoy it here.
My best to you and I hope you are soon feeling better.
Toni
PS Ali: They also use Azulfidine for both the Fibro and Lupus and I took it for RA. Dd a pretty good job but took awhile for it to work and while taking it you need to use a good sun screen.
Hi Toni :)
Thanks for the warm welcome. Don't you wish we were meeting on a "Sweeptstakes Winner Forum"?
Anyway, fibro has been ruled out. I have been to many docs, many from fibro referral list, and they say this just doesn't match fibro symptoms. I hope i dont' offend anyone by saying this; but i don't really buy into fibromyalgia as a diagnosis, but more as a set of symptoms that is secondary to an underlying condition. I have extensive research into fibro and that is what i have concluded. The problem is, in the absense of abnormal blood work, it is so hard to get to that underlying condition.
It is good to know the azulfidine worked. Why, if i might ask, did you stop taking it when you did? Because of my normal bloodwork, my doctor has told me that it is not possible to give me the lupus or connective tissue diagnosis..she thinks i was infected with something and i have developed an autoimmune response of inflammation. Is it possible to have lupus with normal blood work? ANA, Sed rate...all normal. I do hope the azulfidine works. It has been 6 weeks now. How long did it take to work for you? I have been old it takes at least 3 months.
All NSAIDS that i tried did nothing...voltaren, relafin, and of course, the over the counter stuff. Ibuprofin does help me with headaches if i ever get them.
How are you managing your symptoms now? Do you ever have the tendon snapping i described?
Deb, I will e-mail or chat with you soon i hope.
Thanks again for responding. Hope everyone is as good as can be today!
Alison
bumpin' up my own post.
I am pushy when i'm desparate!
I have just seen yr post now and I see you are on azulfidine - that is the same as Sulphaslalzine which is what I am on.
I noticed a difference in the first few weeks, went into remission but
sadly this lasted only about 6 months. I am now adding MTX to the
cocktail.
Your disease is different to mine as I have mainly swelling and a bit of pain that moves almost every day.
Good Luck
Cathy
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