Connect
← Return to After "recovering" from PMR, still decreased strength/stamina
Discussion
After "recovering" from PMR, still decreased strength/stamina
Polymyalgia Rheumatica (PMR) | Last Active: May 21 2:43am | Replies (55)Comment receiving replies
I'm neither an expert nor an advocate, but I have been losing muscle. Initially I lost weight but I've gained 10 pounds on the prednisone, while losing strength. For context, I was diagnosed with PMR in March (symptoms started in October) and SMM this month. I asked my hematologist/oncologist if I could start a 5 grams creatine supplement and he gave his okay. I'm tapering down my prednisone. I'm currently on 17.5mg and hoping to get down to 5mg before my SMM blood work in three months.
Replies to "I'm neither an expert nor an advocate, but I have been losing muscle. Initially I lost..."
Connect
@kjoed53 I cannot imagine the stress that SMM causes you. I took the time to read up on it just s little and it seems that the management includes very active monitoring which I can see how prednisone would mess with. Since you need to balance the PMR treatment with the SMM monitoring I see a few options you might consider.
Rather than a 90 day set of SMM blood work see if you can do the review in 120 days, thus giving you an extra 30 days to reach a lower level of oral prednisone. The other option is a little more complicated. Talk to your rheumy about possibly being moved to a biologic (Tyenne) now due to your circumstances. Biologics have their own set of risks so before you go this route do your research and be prepared to have problems that might take you off them. I did have some significant side effects so I am now back on prednisone trying to get down to 5mg, but the biologic made me feel good for the short time I was on it. Another option would be to ask your rheumy about going on Rinvoq, it is a pill and a JAK inhibitor. Rinvoq is also FDA approved for PMR.