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Leg Weakness and Mobility Issues

Autoimmune Diseases | Last Active: Jul 7 3:40pm | Replies (58)
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@slkanowitz

Prednisone long term can cause steroid myopathy but I would urge you to consider other possibilities. A muscle biopsy may be the only way to be sure. I have been on prednisone for over 30 years and my Drs never considered any other cause for my muscle weakness and atrophy until I became wheelchair dependent and insisted we look further. I was on placquenil over 25 years as well. A muscle biopsy at Mayo Clinic showed neuromuscular toxicity from the Placquenil!
After stopping the drug and not improving, I was then diagnosed with CIDP, a form of Guillain Barre Syndrome mentioned previously. All the while all my Drs urged me to reduce my prednisone, which was the opposite I needed for my RA, SLE and CIDP. They made me feel guilty for taking it, but it was the only thing keeping me going. So it’s never simple and one must have facts, not assumptions of what is going on. Good luck.

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Replies to "Prednisone long term can cause steroid myopathy but I would urge you to consider other possibilities...."
catartist | @catartist | Jul 6 10:51am

So good to hear from someone experiencing like symptoms! Tho’ I am so sorry! RA itself does this myopathy/ atrophy - much worse with daily steroid ! No one really spelled it out till I actually started loosing muscles (2 glutes on each side are empty fatty tissues now - useless) only max left, also in arm and shoulders some loss. No one suggested a biopsy - not sure they think it’ll help any at this point. I haven’t given up but feel Drs may have. How has new info helped you? ( I took plaquenal for a while years ago but not now. Orencia probiotic, methotrexate, and Cymbalta for pain and handling it, tramadol more recently. I lost so much weight that I am eating very intentionally- protein, minerals, calories, bit B12 and such. The exercising is helping balance a bit but exhausting- hope you can get improvement! THAT is the question - what to do and expect?? Thank you for sharing

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