I've had Wegeners since 2003--13 years--and have u...

Home > Groups > Autoimmune Neuropathy > I've had Wegeners since 2003--13 years--and have u...
  • I've had Wegeners since 2003--13 years--and have used imuran for 11. I have neuropathy, bone spurs, and arthritis in my feet that are so painful, at times I feel like I can't walk any more. My rheumatologist just brushed me off by saying he'd raise my imuran to 100 mg and if that didn't help in 2 months, to 150 mg. but after letting him know I really didn't feel raising that med will help my feet, so he referred me to a podiatrist. He said he couldn't help my nerve pain, suggested I use ankle braces. I then saw my GP who was empathetic for my chronic pain, but doesn't want to give me any pills for pain, but wants me to begin 40 mg of Zocur. (Reading up on that med scares me a bit.) If anyone can give me some tips on what I can do to prevent resorting to a wheelchair, please let me know. Should I pursue pain medication? Should I begin Zocor? What helps?

    Question created 1 year 1 week ago


  • Hi. Imuran is the first drug they give u to suppress the wegeners, urs is clearly not suppressed so change ur doctors then sort ur meds. U need immunosuppressant such as ritoximab, u then need to sort ur nerves the best u can, such as deloxetine, Pregablin, there are loads I know coz I've in same boat but my nerves are being treated, I just don't take to the meds but everyone different . Honestly seek new doctors , second opinion coz ur being held back. I did the same a few years ago to find out the doctor treating me at the time was not experienced enough to deal with an illness little was heard about.
    My feet an legs are murder some days.
    Have u seen somebody for fibromyalgia? It's part and parcel to the wegeners.
    I'm far from being sorted but the team is trying, I don't take well to medication such as tablets.
    Are ur bloods stable? Do u have a positive anca... If ur bloods are not stable and ur anca is positive then u need something a lot Stronger than imuran such as ritoxamab or cyclophosphamide. Don't settle for being fobbed off with what the hospitals class as bronze meds... Get on the gold and platinum.... My doctors words
    U want to not end up in a wheelchair u need help and the doctor not testing u correctly is sending u to that chair.
    Hope u get fixed


    asked 1 year 1 week ago