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After "recovering" from PMR, still decreased strength/stamina
Polymyalgia Rheumatica (PMR) | Last Active: May 21 2:43am | Replies (55)Comment receiving replies
@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.
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@jabrown0407
Thanks for the insight. I'm doing a tapering based on pain management. I'm going down 2.5mg at a time now. It took me a week to get used to the drop to 20mg and I waited three more days then went down to 17.5mg. I'm hoping to go down to 15mg by the time I have my next rheumatologist appointment on the 28th. That's where he started me but I needed 25mg for the girdle pain to go away. I'm using girdle pain as my guide because my shoulder pain is my constant due to the SMM. As long as I don't have girdle pain and my shoulder pain is manageable I will continue to taper. Getting an accurate picture of the SMM is my priority now. I've asked my hematologist/oncologist about LDN if I need to be on meds for SMM. There's a good chance that LDN will also work for the PMR according to everything I can find on it, including some posts on Mayo. Sorry for the long reply, and thanks again for your suggestions. My rheumatologist has a very good relationship with my hematologist/oncologist practice and they keep each other informed of all that is going on.