I have started to have weakness in my thighs. I notice it when attempting to stand from a seated position, going up stairs, even just a few, and walking a short distance- like to the kitchen. I understand it is a side effect of prednisone. Any advice on how to resolve? I have things to do😊. I have cut back on almost all holiday decorations and baking, shopping, etc, but I do have some minimum things to take care of and would love to build my strength up.
I have a call into the Rheumatologist also currently at 40mg Methylprednisolone + Actemra week 7.
Thank you in advance for any advice!
/mk
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Mks9558
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Thanks piglette - I will try. Very frustrating, just one one issue is resolved another rears itself. Argh! I am a fighter so will attempt what it takes!
You are right there, each one equally hard to deal with. These weaknesses seem to pass. I have had it in my hands. My knees are killing me at the moment, no other symptoms, not sure if it is even PMR pain.
Thanks Jane -Seeing Rheumatologist next week- she is concerned it is Corticosteroid-Induced Myopathy. One day at a time...hope your knees feel better soon . We have things to do and places to be and I know we all would like to enjo at least some of the season!
Of course- happy too. There is info on google- all related to being on steroids - there are work around also. I am anxious to learn more myself. My appointment is Wednesday the 19th. I am in the USA.
Turns out I Han no reflexes in my legs - she sent. Me straight to ER for 3 MRI’ s and I will follow up with neurologist.my advice is to get looked at and ensure there is nothing else going on, she is also recommending a cane to avoid falls. Yikes - not feeling that old....
I had the same and was beginning to worry that I might have something more sinister going on. However, with the help from this forum and a knowledgeable GP I was referred to a Physio who helped me with some very gentle exercises which I worked on very slowly. I also started Aquacise which helped more generally. Walking was also recommended- but just a couple of minutes to start, building up and always taking good rests. It has really helped and my hips, thighs and legs have responded. They are much stronger now but it has taken time. I’m 61, started on 20 mg 5 years ago and now down to just under 3 on the dsns taper method. I do 3-4 aqua sessions a week, a personal training session geared to my specific needs. And try to do 9,000 steps most days but if I have a day or two when I can’t do that it’s also fine. Others on this forum have mentioned Bowen Therapy and Yoga or Thai Chi but I’ve not tried these. All the best x
Hi Janet- thinking along the same lines- I had Bowen massage last week. It was the best 120 min of the last 4 months! Looking forward to hearing what the rheumatologist has to say...
Now this is interesting. I was progressing down to 3 1/2 mgs. I was struggling at that then I got cellulitis and old PMR pains got really bad again. I went back to 5 and eventually got better. Then started DSNS taper again but developed a new pain right at the top of my thighs almost in the groin. Very difficult getting out of chairs, going up stairs but most annoying, when driving, lifting feet on and off pedals. I presumed it was just a new variation of PMR. I’m wondering now if it is something else. I’ve gone back to 5mgs and I’m a bit better. I’ve also started back on my rowing machine and even with very little work, the action loosens up my hips. Wondering if I just need to tough it out.
Groin pain aggravated by the things you mention can be due to bursitis - trochanteric burisits tends to be on the outside of the thigh but iliopsoas bursitis can cause pain right in the groin, deep down, in some ways similar to OA pain, when you stand up and put weight on it, going up stairs or using your legs.
It is recommended in guidelines that PMR patients should be offered a tailored physio programme from the start - but above all if they start to experience muscle weakness or steroid-induced myopathy. If you develop myopathy it usually becomes obvious as loss of bulk of thigh muscles - my trouser legs were suddenly very wide!!!!
I had no problems with prednisolone and none with prednisone but in the few months I was on methyl prednisolone I had quite severe wasting of my leg muscles. Janet has said the rest I would say - with prednisolone I had done aquafit daily Mon-Fri, Now I walk at least 1/2 hour almost every day - nothing more exciting! During the methyl pred I had been on crutches as a result of achilles tendonitis which was also due to methyl pred and didn't help of course.
However - the good news is that the muscle bulk can be regained - but it DOES require appropriate exercises, preferably guided by an expert. It may be worth asking to try a different form of corticosteroid as I was able to do.
And nearly forgot: the things you describe are also typical of early PMR symptoms. Are you sure that you haven't overshot the dose you need?
Could be on the dose, I have had issues all along with prednisone and then getting switched to Methylprednisolone- reducing from 40 mg today down to 32mg. Hoping for no new issues there...
My legs are weak and I get out of breath easily. I put it down to my hip replacement and the time I was unable to walk at all. Then my hip got better and I thought it was being extremely overweight. I have to get fit. The more I do the more I feel it. So I then blamed Osteoarthritis. I go to the Gym now as I can walk on the safe flat treadmill to build balance and stamina. I also use the hip and thigh abduction machines. I stretch my back out on another one and want to give Yoga a try. That’s all takes me about 45 minutes at own pace doing as little or as much as my body allows. Sometimes I can’t do anything. I am stuck on 8mg Pred till the Dr finds out when I run out but that suits me. Every little helps but my sister and husband are much fitter and have lost a lot of weight. They try but don’t really understand how the PMR works but I don’t care anymore. I couldn’t walk far outside so I avoid it. I could do with higher Pred doses but it’s not worth the consequences. Do what works for you but in my opinion it’s PMR restricting you.
There are various prednisone options that metabolize differently. Drugs.com will give you a better description than I can. Also, in different parts of the world the medical community appears to rely on different types of prednisone. They are all considered corticosteroids and should achieve the same results. I had some issues with prednisone so my rheumatologist switched me from prednisone which metabolizes in the liver to Methylprednisolone which does not metabolize in the liver. There are other differences I am sure, you can read about it at the link above. As you know everyone reacts differently to medications as well as having different symptoms of the diseases. Hope this was helpful!
Oh thank you darling. I am on one called pana something. I thought it was pannetoni but that’s an Italian cake isn’t it. Doh. Blonde. Seriously I will look it up. I didn’t know all that and I want to be in some sort of control xxxx
Update/45 minute Rheumy appointment turns into 7 hour ER visit. So doctor was. Very upset that I was. It reacting to her little tool that checks for reflexes- no reflows whatsoever on my leg. The did 3 MRIs and have referred me to a
Neurologist Will keep you posted. I do have a new nifty pack of ladies padded paper underwear - now don’t be jealous they promise me once I am done I am done!
I am going through the same thing. I can take steps very slowly and painfully. I have a 3 story house; I took the easy way out: had a stair lift installed and it has been wonderful. I still take the basement steps to do laundry which I now put in a sack I can put over my shoulder. Physical therapy may be helpful. I have a lovely jacuzzi, but can't use it b/c can't get out. I have gotten out, but only after a lot of dangerous struggling. It is so disappointing for these things to be happening when I exercised at the gym for 20 years and was physically fit for so long.
I also learned that I have a paraesophageal hiatal hernia which is compressing a lobe in my lower lung which limits stamina. Probably happened during all that exercising.
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