Pain from wegeners

[JanieLynn]

I recently tapered off prednisone. My doctor gave me mobic for the joint pain, it worked from 5mg until 2mg. 2 days after i got to 2mg i have had increasing pain. Does anyone else have this problem and what do you take for it?

[Sangye]

If you're having joint pain it's likely that the Wegs is not adequately controlled. What immunosuppressant are you on?

I went 2.5 yrs with joint pain that my docs said was something I'd have to live with. I knew it was active Wegs and recently we proved it.

[JanW]

I agree with Sangye and would say that this is disease activity.

[flana]

Ouch! I've been having this pain since quite a while as well. It was severe when it began a year ago (Dx'd a year and a half ago). and then went away. But the pains came back again about 6 mos ago. These are terible pains in the limbs, especially during the night.

My ANCA Serine Protease 3 levels have risen as well.

What do you suppose you make of that?

[elephant]

Sounds like Wegeners is active.

[JanW]

ANCA rising in conjunction with P3 rising pain, I would say your wegs is active. Haven't you been on ctx for about a year -- if that treatment was working for you, you should be getting better by now. You may need to try rituximab.

[Sangye]

Yup, I agree.

[flana]

So I saw my Rhumi last week and he said the same. But how do you know if the pain in the limbs is a Weg activity?

Sangye, how did you prove that in your case?

[Sangye]

Joint pain is such a common symptom of active Wegs, that it should be assumed it's coming from Wegs unless it's proven otherwise. Raj, I'm really worried that you've been on ctx all this time and are having signs of active Wegs. I know I've voiced my concern about how long you've been on ctx before. But if it isn't even controlling the Wegs, it should be addressed.

My case.... When I was first treated with ctx/ pred, as soon as I tapered the pred below 20mg the original jt pain came back. Not as severe, but pretty bad. It continued during the 2.5 years on cellcept, even though my docs thought the Wegs was controlled most of that time. I knew it wasn't. Excuses were made about the joint pain--arthritis, being out of shape, you name it. But I knew it had the same quality as the original Wegs pain, which for me is a very distinctive pain. As a result of last year's severe flare, we used rituximab (2 month-long rounds) and the pain was pretty much gone for the first time in 4 years. It's creeping back lately, and I suspect I'll be needing more rtx soon.

I should note that the entire time I had joint pain my inflammatory markers were completely normal. This is why the docs told me it wasn't Wegs. Well for some of us, those markers are just not accurate.

[JanW]

If nothing else, a doc could bump the pred to see if that makes a difference in the joint pain. If it does, then you know the pain is inflammatory. If the pain is inflammatory, assume it is WG regardless of markers.

My case, inflammatory markers were normal (ANCA and P3 abnormal but they could stay there, always), yet I was still having significant pain and mobility issues in my left ankle. Doctor decided to try to pred (medrol) pack on me to see if that made any difference in the pain (I am not on pred as part of my WG treatment). Within 24 hours I had significant lessening of the pain. Completely the pack, upped mtx by one tab, and saw pain reduce probably 90 percent within a month. And my rheumy didn't initially think that the ankle had anything to do with the WG at all.

Most WG experts will say that you can't go wrong assuming that anything that's wrong with you is based in WG.