Diagnosed with Panca Vasculitis, Rhumatoid, and Osteoarthritis

Diagnosed with Panca Vasculitis, Rhumatoid, and Osteoarthritis

I'm sorta new at this, I was diagnosed with polymyositis in 2014. I couldn't use my hands or stand up straight. It hurt to walk, sit stand, or even to lay for any amount of time. The Rhumatoligist wanted me to take chemotherapy treatments but I couldn't bring myself to do them at that time. So I tried herbal supplements for about 2 years but I still wasn't able to use my hands. That is when I got a second opinion and later I let them give me the Cyclophosphamide. I took 3 treatments of cyclophosphamide and it caused nodules to pop up on my fingers so he stopped them and started me on the Rituximab. He gave me 2 treatments of it and then told me my Vasculitis was in remission. The last time I went to him I told him I was still in pain and he didn't even order a new blood draw. I was having a flare up at that time and he did nothing for me. So I called his office after about a week of trying to get a message to him, he finally ordered blood work. I ended up in the emergency room. My inflammation was 4 times higher than it was supposed to be. The ER Doc. gave me a steroid pack to take to calm it down. That's when I found me a new Doctor. The new Doctor told me my Vasculitis was not in remission, but my Rhumatoid was. So now he is wanting to start me on Azathioprine or give me another infusions of Rituximab.. I am still in a lot of pain in my sinuses, head, and hands. I don't know what to do.

Has anyone had all these different kinds of arthritis that I have and been treated for them? If so what did your Rhumatoligist prescribe for you? I would love to hear from anyone on the use of Azathioprine for Panca Vasculitis. Did it help with your pain? I am on 10 mg. of prednisone and 500mg of Percocet for my pain right now. The Rhumatoligist hasn't told me if I can go off of the pain pill and prednisone if I take the Azathioprine or Rituximab. The Doctor is lowering my pain medication and my prednisone though, even though I'm still in pain. It's like they don't hear what I'm telling them. I have suffered for many years before being diagnosed with Vasculitis. I pray for all who have this awful disease because it's incurable. I just wish they could find a better way to treat it. God Bless Everyone. STILL SUFFERING!!!!!

IN PAIN!!!!

Deebeau

1 Reply

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  • I think it would be best if you contacted the vasculitis Uk helpline for advice, your case and history sound very complicated vasculitis.org.uk/helpline

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