Hi, I'm new here and wonder if anyone else has been diagnosed with myopathy following the apparent end of PMR? Having decreased steadily over 20 months from 15 mg, I came off prednisolone 10 months ago. This was with my doctors encouragement despite increasing PMR like symptoms but no inflammation markers up. Doctor dismisses possibility of flare up. over the next several months I've had increasing pain and weakness in my shoulders and hips, and general muscle weakness and tiredness. Eventually installed grab bars around house and had wheelchair help at airport. Doctor refused pain relief saying it leads to dependancy and isn't very effective.
Changed doc 4 months ago and new one says I have myopathy and treats me with Naproxin which helps enormously with pain but doesn't change muscle weakness. Has anyone else here heard of myopathy following PMR? I can't find anything on the web about this.
Wishing you all as well as possible xxx
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Pmrflower
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Is it just weakness or is there muscle wasting too? Did you try any OTC pain relief? I think your first GP sounds appalling and I am very glad you changed. Has this one done any tests?
The way to deal with myopathy is targeted physiotherapy - I did have myopathy and wasting while on methyl prednisolone for several months but as soon as I switched to a different form of steroid and walked as much as I could (bit difficult, I had an achilles problem as well and was on crutches) my leg muscles got back to normal.
There aren't very many people on the forum a year or more off pred but I do know quite a few and have never heard anyone complain if myopathy after stopping. One lady in her 80s who still runs her enormous garden herself does say that it was a good year before she felt "right" physically - but you are getting close to that.
Thanks for the speedy response. I don't know about muscle wasting, for example, I have trouble opening jars, getting on and off the loo, climbing stairs and lifting a water jug without using both arms. Walking on the flat has improved my stair climbing ability. I live on a steep hill and try to remain a keen gardener but find my hips often aggravated and in pain after a short time gardening. Limited arm movement may be due to a rotator cuff problem in both shoulders, this has yet to be clarified. OTC like cocodamoa, paracetamol, iboprophin didn't touch the pain.
New doc ordered knee X-rays which I'm getting the results of on Friday. This is because the consultant said I might have osteo-arthritis in them. I'm still doing the hip exercises the physio gave me last summer . To be honest I've not been very proactive as I've not seen a benefit, unlike the walking on the flat. I have to drive away from home to find a flat spot! Thinking of the lady in her eighties gives me hope, as the stair climbing is slowly getting easier except on a bad day. I've not yet noticed any improvement in my arms. The first doctor was kind but implied there was nothing that could help. It was prompting from a friend who has PMR that led me to change doctors and push for some pain relief. The doctor I have now (same practice) says it is very rare for people to have PMR flare ups. Hurray for wise friends and healthunlocked
" The doctor I have now (same practice) says it is very rare for people to have PMR flare ups."
I beg his pardon? What tripe!!! I assume he means recurrences - but the time scale you describe is typical of someone whose PMR was still active but 1mg was enough to keep the inflammation under wraps. Fewer than 1 in 3 are able to get off pred successfully in under 2 years - only half are off within 6 years. And people DO have recurrences of PMR - I know several. It may not be very common, but it does happen and if you are the person it is 100%!
Had you remained on 1mg you would probably have been fine - as it is, the PMR is still there, at a very low level, but enough for you to feel. Prof Dasgupta from Southend, national PMR/GCA treasure, said a few weeks ago that he keeps patients on 2-3mg for years - it reduces the risk of relapses and is such a low dose the risks are minimal.
No I don't think they do, the guidelines seem to suggest that the initial dose of Pred sends you into remission in weeks then all you have to do is taper off 1mg a month and Bob's yer uncle, 18 months or 2 years later you're off Pred and all fine again. If that doesn't work for everyone blame the patient for being unusual or tell them they can't have had PMR in the first place. They even use the words 'once remission is achieved'.
This was the impression that I was given. Like you, when I was on the steroids I was able to garden as athletically as I had in the time before PMR symptoms started and and had plenty of energy too though I know that this experience isn't true for some. I don't see the wasted muscles and thinness in myself that PMRpro described. It was only when I reduced to 4mg that symptoms began again and gradually increased over the next few months. It's tricky for me to address the doctor's ignorance as this is my catchment area, also the consultant supported the doctors view that I no longer have PMR. I'm thinking of asking him if he would look at this site which I have already told him about. I'm going to start exercising with the water bottle lifts whilst I'm watching telly. Thanks for all the support.
I would challenge them and say I DO still have PMR, I have the symptoms and I know how it feels. If they come out with things ike bloods are clear say 'but every PMR specialist says you can't go by bloods you go by symptoms and response to steroids. I have waved Kate Gilbert's book in front of one rheumatologist!
I sure agree with this! When I first started researching PMR and before I found this forum, that’s exactly the kind of stuff I was reading. I found it suspicious indeed. It just didn’t seem like it would work that way. But alas what do the actual PMR sufferers know? I guess it’s just all in their heads.... (sarcasm)
I’ve had PMR twice with years in between...the first time was horrible because no one could figure out what was going on...thyroid issues they said...but a quick run of prednisone helped immensely...this time, as I’m older, it’s hanging on...3 years and waiting for it to leave, but I’m able to get down to 1 or 2 mg..I’ve went up to 5mg once for a week when I felt crappy but that’s been it...muscles are definitely not what they should be but I do exercise..over and over I think, “is it the prednisone or the PMR that’s making me weaker and sore”....no good answers to that one..
Hi, yes ive noticed a weakness in arms and legs , but i put it down to not walking as much due to lockdown and was in a great deal of pain. Found some really good and gentle stretching exercises on You Tube .Well worth a try. They last about 10 minutes and have helped me a lot. You have tolook at a few before you find the ones that suits you ! Hope this helps and good luck. Best wishes Viv.
My question is, is it the Pred that causes the myopthy, muscle wasting or whatever you call it, or is it the PMR itself? I know I've lost muscle, but don't know why. If I'm on high Pred I can walk fine and for miles whereas without it I'm hobbling, so I suspect it's the disease rather than the cure to blame. I'd expect muscle wastage as I get older anyway wouldn't I?
Depends - can be one or both. My muscles aren't as good due to lack of use because of pain/fatigue/bursitis. But I also had the steroid-induced variety - but for me it was different, you could see the loss of muscle, the muscle groups changed shape.
Have you been given tests to confirm muscle myopathy? It sure sounds like PMR to me and personally I'd be back on prednisone to see if it relieved the problem.
I'd also be looking for a different doctor based on his lack of basic knowledge of PMR.
What a terrible Dr that first person was...and some people just won’t change doctors for one reason or another..glad you did...I’m down to 1mg of prednisone and will try to quit soon...still have lots of sore/stiff muscles and joints though...at least my Dr doesn’t try to push things, he lets me be the judge of if I need more or less prednisone...probably because he doesn’t understand the disease much more than I do...
You’ve done really well to get to 1mg but I wouldn’t rush to come off the 1mg when you still have symptoms. I would even try an extra 1mg to see if symptoms improved. If they do you know you’re body isn’t yet ready for that final reduction.
If you try a smaller reduction you might get through it better but only reduce when symptom free. I can only reduce by 0.5mg now. Good luck.
I had got down to 4mg when the pain and stiffness started again and was encouraged by doctor and physio to carry on reducing to nil. This may have saved me from more steroid induced myopathy but I agree that I could well have still had low level PMR.
I don't have much to offer but I do think age is part of the equation for muscle weakness. I got PMR diagnosed 2 months before my 70th birthday and will be 72 this coming January. Still at 11.5 mg pred a day and reducing by .5 via DSNS method. Last time I made it to 10 then ended up in too much discomfort so went back to 12 and felt better. As for muscle weakness, I still feel pretty robust but I do notice a lot of clumsiness lately and some balance issues - probably due to my age. I'm hoping to some day shed this awful thing and take a reasonable amount of Pred - say 5 mg or less which I would probably stay with just in case the pain came back after going too far down. From all the comments I see that as years away still - good luck to all.
Yes, I'm aware that it's optimistic to expect to rejoin post steroid life at the physical level I was at 68 when it began. However at the moment my balance and strength are slowly improving despite ups and downs.
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