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After "recovering" from PMR, still decreased strength/stamina
Polymyalgia Rheumatica (PMR) | Last Active: 5 days ago | Replies (55)Comment receiving replies
Thank you for the comment!
It’s exactly what I am experiencing - no competitive sports, but I did work out 4-5 times/week at YMCA. I was on 15 mg /day Prednizone several months & I tapered it myself because of the side effects. I tried the Wahl’s diet and meditation which helped. Then severe flare after being health care for parents in their 90’s. Dr. Put me on 60 mg/day of prednisone due to bloodwork - ESR, CRP, etc. I just couldn’t take that much - loss of hair, couldn’t sleep, etc.
I didn’t know until now that the Pred. Could cause thin skin - but mine has definitely changed. I walk several miles daily & do stretching exercises but not much with weights anymore. I still feel exhausted, I have to take breaks between mowing my front & back yard, now. I sincerely pray this isn’t permanent. If you or anyone finds solution, I’d love to know. I can handle the pain & stiffness, I think, but this “tired to my bones” is wearing me down mentally. I was told PMR rarely lasts more than 2 years - as I approach the end of 2nd year, I pray that is true.
I am thinking of going on the AIP Diet someone posted in this forum.
Replies to "Thank you for the comment! It’s exactly what I am experiencing - no competitive sports, but..."
@bizeemom Yes!! This is so hard to deal with. I was recently diagnosed with PMR in early March and on my 2nd of 4 week tapered dosing of prednisone. My doc has me concurrently on hydroxychoroquine. Once the pain and stiffness went away, I've noticed that I've lost my stamina. Even lifting my arms to dry my hair requires a break. Used to park further out in parking lots and walk, now I rely on valet services when they have them. Working in the garden, I dig a little, rest a little, dig a little rest a little. I don't like this at all. So demoralizing when I am used to feeling stronger.
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@bizeemom
I'm really sorry that you have had this experience. Almost two years of PMR and still on 15 mg of Prednisone along with a flare in the interim that required 60 mg. I wouldn't be overly optimistic that PMR will stop abruptly after 2 years.
Being tired to the bones is probably an indication that you have secondary adrenal insufficiency which is another side effect from long term Prednisone use. Adrenal insufficiency will require an even slower taper after you get into single digit doses of Prednisone.
Losing your hair, thinning skin and insomnia are all side effects of prednisone that you have experienced --- there might be more the longer you take prednisone. All of the above is an amble reason for trying another approach. The AIP Diet might help but I would recommend having a serious conversation with your doctor about trying a biologic like Kevzara. It doesn't come with any guarantee that it works but it might be something to try.
I was on Prednisone for 12 years before a biologic was tried. I was able to taper off Prednisone completely in 1-2 years after the biologic was started. I'm still being treated with the biologic medication but I have been off prednisone for 5 years. My biggest regret was that a biologic wasn't tried sooner because it has worked better for me than Prednisone did. I don't have many side effects from the biologic medication I take but there are some potentially serious side effects. I haven't had any relapses except when the biologic was stopped. The biologic was easy to stop though. The couple of relapses I had only happened gradually and were not severe unlike the sudden and severe overnight relapses I experienced when I took prednisone.
Good luck with whatever you try going forward.