← Return to Autoimmune Muscle Atrophy Myositis coupled with Rheumatoid Arthiritis

Discussion
Comment receiving replies
@amy19

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!

Jump to this post


Replies to "Hi @pm56! Thanks for your reply, we have a lot in common. Congratulations on your weight..."

YES! Pre-eye surgery everything was so blurry, so I never knew if I was wearing a shirt with a stain on it or not! Your wild-fire tale is both terrifying and hysterical, lol.

I am truly sick and tired of overlap syndrome where none of my labs and markers match my symptoms and vice versa. Something showing up on the neuromuscular testing would almost be a relief as that would finally mean a diagnosis with treatment.

I did try a JAK inhibitor (Rinvoq) but had a DVT within days, so I was taken off and my doctor never put me back on another one. Have you had any myopathy panels done for the weakness?