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Autoimmune Muscle Atrophy Myositis coupled with Rheumatoid Arthiritis
Autoimmune Diseases | Last Active: Apr 30 2:30pm | Replies (30)Comment receiving replies
I gained 60 lbs over the last 6 years on Medrol. I think the moon face is what bothers me the most, but I have managed to lose about 35 lbs (and one whole chin!) in the last 9 months by eating more of a Whole Food Plant Based diet. It’s slow going, but I guess better slow than not at all, lol.
It’s a good idea to stay current with your eye check-ups as daily Medrol can affect your eye pressure. My cornea specialist sees me every 3 months to check the eye pressure and was monitoring the cataracts that developed from the steroids. I finally caved last year and had them replaced once I wasn’t legal to drive anymore (I’m 55). It is an incredible drug, but the side effects can be terrible. I also take Boniva, an osteoporosis preventative, and despite being in menopause, I actually gained a little bone density even on the steroid, which was encouraging.
Your “ tapered, flared, rinse and repeat” resonated deeply with me and has been an ongoing cycle for the last 6 years while I try to find “the one.” I’m in the process of being tested for Myasthenia Gravis which might explain why I have muscle weakness and shuffle when I’m off the Medrol.
Neither Orencia nor Rituximab worked for me when I tapered from the Medrol, but on the plus side I had no bad side effects from either, so I really hope one of them works for you 🙂
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Hi @pm56! Thanks for your reply, we have a lot in common. Congratulations on your weight loss! I have gained and lost 40 pounds twice over the last 20 years, and the steroid belly is the worst!! And every time I try a new medication I gain 10 or 12 pounds and have to lose it all over again, sigh. I take the same approach as you -- better food, keep walking, safe exercise.
Eye pressure is scary, right? I had my cataracts removed in 2020, and they had to laser them again two years later. Funny story ... I live in Santa Barbara, California near some large mountains, and the year I had terrible cataracts there was a huge fire roaring down the mountain heading straight for us. I live with my adult daughter and she panicked, but I looked out the window and said, "Oh, it's not that bad!", lol. The smoke was so bad that we left for a couple of days so that my lung disease wouldn't get worse. I was using an oxygen concentrator and when the power went out we had to leave.
Menopause (I'm 61) makes everything so difficult. Thanks for the info on Boniva. I need something better than Fosamax and I'm so nervous about the side effects. Forteo is probably in my near future. Finding joy in the simplest things has kept me going.
Let me know how your test comes out. I am still trying to get an answer about these overlapping symptoms including muscle weakness and fatigue. Opening a heavy door and lugging the laundry around is so much harder than it used to be. Have you considered a JAK inhibitor?
I've gotten run. I look forward to hearing from you. Take Care!