... flares. In the past 6 months my flares which is pain and debilitating stiffness have come every week now and my Dr emailed me warning that I must not take so much. Apparently it was on an auto refill for the flare dosa but I was not even treating the flares just suffering. This doctor has is the local research doc so nobody questions her but I am diagnosed with RA and fibro and she offers no pain relief no help otherwise I had to beg for PT and it didn't help but she threw Humira and other injections at me but I literally almost died of sepsis and C Diff! I am allergic to methotrexate. And I react to Imuran. So prednisone is really it. They got me to stop taking Xanax and since them I'm a mess. I can't tolerate moving and my life is falling apart. I am scared because she emailed me admonishing me and I feel like nobody is listening to me
I'm sorry to hear about your plight. Being in pain with no-one listening is no picnic. As it's likely that both RA and fibro, as autoimmune diseases, have a mast cell activation component you might try Myfortic, which I take for autoimmune hepatitis. It comes under the umbrella of Mycophenolate and is relatively new, but expensive unless subsidised by your local area health service.
Like you I'm allergic to Imuran, which I'd tried because it's a cortisone sparing agent. I'd been taking increasingly high doses of cortisone to the point of Cushings Syndrome. We found that as a side effect, Myfortic also helps control my asthma. So it does seem to have broader applications in autoimmune suppression than is generally thought. As RA is an autoimmune disease and Myfortic controls autoimmune heptitis, it might be worth a try.
I understand what you mean when you say you're not treating your RA, instead you were just "suffering in pain".
I myself have systemic Lupus which is similar to RA. At times I have joint pain 24/7.
You mentioned that you're allergic to methotrexate and that you cannot take Imuran. What about Plaquenil?
Plaquenil is an anti-malarial drug which helps suppress autoimmune diseases.
For my Lupus I take 400 mg of Plaquenil (Hydroxychloroquine) a day. Although the Plaquenil does not take away all my pain it does allow me a life with mild to moderate pain levels.
Lastly, I agree with the other member. I too think you should get another doctor. You need to get a rheumatologist who cares about you and your RA.
- Prednisone Information for Consumers
- Prednisone Information for Healthcare Professionals (includes dosage details)
- Side Effects of Prednisone (detailed)
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