Joint Pain

[mich911]

Hi everyone,

Was diagnosed with WG June 2016. I was on high doses of Prednisone and had about 4 rituxan treatments. My last treatment was Oct. 2, 2017. The treatments have helped but since going off prednisone completely in September, I've recently been having joint pain & fatique. Has anyone experienced this and is there any treatment besides prednisone to help the joint pain. I really don't want to go back on the Prednisone but I will if there is no other option. The joint pain is worse at night & in morning. I have prescription ibuprofen and it does help for the evening. If anyone has advice or has gone through this, please let me know.

Thank you,,
Michelle S.

[Pete]

You may be experiencing a flare or prednisone withdrawal. Please check in with your doctor.

How quickly did you taper off prednisone? Are there any abnormalities in your labs?

Hope you get relief soon!!

[mich911]

You may be experiencing a flare or prednisone withdrawal. Please check in with your doctor.

How quickly did you taper off prednisone? Are there any abnormalities in your labs?

Hope you get relief soon!!

Hi Pete,

I tapered really slow and was feeling pretty good in October & November. Started getting gradual joint pain and saw my doctor on Dec 13 and felt pretty good. My joint pain has gotten worse in the last week. The doctor reviewed my bloodwork and said it looked good. My sedation rate was elevated but nothing else was. I'll check with my doctor. Due for another treatment in Feb.

Thanks,
Michelle

[Alysia]

Hi Michelle,
I get joints pains when I taper down the pred. For years now that I cant get under 5mg pred.
Another note: I also suffer from microscopic colitis and my nutrition is bad. Lack of vitamin C can also cause joints pains. Try to eat food rich in vitamin C or maybe take vitamin C pills/ emergen C. I can feel the difference right away. At the same day that I took emergen C - my joints at night were less painful.

[Arleta]

Hi everyone,

Was diagnosed with WG June 2016. I was on high doses of Prednisone and had about 4 rituxan treatments. My last treatment was Oct. 2, 2017. The treatments have helped but since going off prednisone completely in September, I've recently been having joint pain & fatique. Has anyone experienced this and is there any treatment besides prednisone to help the joint pain. I really don't want to go back on the Prednisone but I will if there is no other option. The joint pain is worse at night & in morning. I have prescription ibuprofen and it does help for the evening. If anyone has advice or has gone through this, please let me know.

Thank you,,
Michelle S.I have taken Cymbalta for joint pain (knees mainly) for several years. Nothing else worked---injections, medications. I still have some pain, but it helps.

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[gilders]

I have been living with and been treated for Wegener's for over 20 years. Until a couple of years ago, all my relapses were treated with pred and aza. I didn't suffer from withdrawal symptoms from pred as it was reduced very slowly.
But, since receiving Rituximab, I began to get severe joint/arthritic pain the couple of weeks before my next RTX infusion was due. As you receive a good dose of IV steroids with the RTX infusion my joint pain would disappear almost immediately, only to return a couple of weeks before next infusion. After my last infusion of RTX and the steroids that came with it, the pain returned a few weeks later (By now I was off pred). It finally went away about 6 months after.

It seemed that Rituximab was preventing my body from being able to decrease the oral pred without bad side effects that I previously hadn't suffered with. But after 6 months of neither, things seem to have settled down.