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After "recovering" from PMR, still decreased strength/stamina
I had a relatively brief bout of PMR, all pain gone and inflammation markers back to normal after only a few months of prednisone and sulfasalazine. (Yes, I DO know how fortunate I am!)
This recovery was almost 2 yrs ago, but I have not been able to regain my pre-PMR level of fitness despite exercising just and hard and frequently as before. I'm a very fit 65 yr old male, and I wouldn't really care about not being being able to regain my pre-PMR strength and stamina, but I row competitively so the drop-off is quite noticeable when I'm racing (and LOSING!) against other serious athletes.
Anybody else have a similar experience, or advice on how to train in my post-PMR world?
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@dadcue
Yeah, PMR and prednisone sure run the gamut! One person gets over it in a year and another never gets over it. One person has minimal issues with prednisone and another has to deal with every side effect plus some new ones! Of course we don’t hear much from those who recover quickly. Seems like no two cases are the same except there’s still the tightrope and how long that rope is.
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5 ReactionsI just wish to add what artificial intelligence says about this topic.
"Why it Takes So Long:
The phrase "it will go away when you stop" often undersells the structural and metabolic remodeling the body has to go through to return to a pre-steroid state. You are not just stopping a medicine; your body is undergoing a major recalibration."
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5 ReactionsI'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.
@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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1 Reaction@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.
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2 ReactionsThank 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.
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3 Reactions@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.
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5 Reactions@dadcue Thank you. I actually tapered myself off of the prednisone because the side effects were worse than the pain. I have a bunch of 5mg tablets that I can take if I wake up to a really painful morning. They tried an infusion (I forgot the name - started w M). I got immediate red welt like large hives, and they stopped. I quit going to Rheumy after that - my PCP is wonderful. If this goes on much longer, I’m going to have to have new, lower shower head installed - it’s so hard to reach up. 😉
I want my energy levels to come up. Prednisone wreaks havoc with my blood sugar & I thought that was the problem. But I’ve only taken a 5mg & a 2.5 mg in the past 2 weeks so energy must be something else. All my mitochondria went on vacation.
Thank you!
@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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4 Reactions@bandorino I am very sympathetic and have been there w the overwhelming fatigue and a seeming inability to get off prednisone for me. It took two years to get off it and I was so afraid I was gonna have a flare that I really took it easy at the end I went down to 1 mg for probably 2 months then a half a milligram for over a month and then for two weeks I even did .25 mg and finally off. It seems to be holding. Don’t give up on exercising - though you may have to find what will be tolerable. Yin yoga was a life saver. Very passive stretching. Also pilates on a reformer was very good for me. Club Pilates are all over the Country and you can literally go every day - I went maybe 4/5 times a week beginner classes. It was manageable. Don’t give up on moving if you can - even short walks. Giving in to the pain just makes it all worse - that is, if you can get on the right meds that will help you control it. I really never thought I’d be able to get off prednisone. I mean I couldn’t imagine I couldn’t get off it but every time I tried I would get a flare. And then I did! They say my PMR morphed into a rheumatoid thing and maybe it has because I do have some weird joint issues but it’s not PMR anymore and that is a miracle.
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