Kind of surprised I didn't see an FAQ for this. I think I remember it's being mentioned before multiple times, but a quick search seems to show that it was mostly in passing.
Anyway, I seem to have it in a big way. It all started with the general weight loss I had before I was diagnosed. It does, though, seem to be ongoing.
Is it just from lack of use (exercise tends to exhaust me)? What else might it be tied to? Thanks
This was an interesting thread and when you click on the link you will find on the right hand side more muscle stuff. Others will be along shortly as well.
Is it specific large muscles? Have you discussed it with your doctors? Have you requested physiotherapy for specific exercises?
Arms for the most part, maybe a little legs (though I do walk a good bit). Have not mentioned it to anyone other you fine folks. This is something that is totally new to me. Wasn't even sure where to begin. Is it my condition, my meds, inactivity, my diet ...
If arms are deteriorating - you need directed physio, light weights maybe. Walking doesn't help arms ...
Hi Winfong. I've commented many times on this in many threads. Firstly this is a significant by-product of prednisolone. Some people seem more prone to this deterioration. Thighs ,buttocks and upper arms and pectorals. First it takes the fast twitch muscle. This is the main reason we often stumble as our fast reaction to misplaced foot or inability to move the leg fast enough is inadequate. Then it moves to endurance muscle. The reduction in muscle mass can be dramatic. In my case I am reckoning some 50-60%. This has turned into belly fat and neck/face fat. It obviously reduces the stamina and strength. This prevents us from exercising as we used to and also limits the extent to which we can work and exercise to replace the lost muscle. It seems that there is another factor at play. The pred. has a secondary mechanism which prevents us absorbing the necessary nutrients from our diet to build muscle. Exercising at a level to rebuild muscle uses energy which done to excess sets us back and risks a flare from overdoing it. I don't see anyway out of this until it is possible to substantially reduce pred. My level of 30mg is definitely causing harm. I'mnot sure anyone is looking into this as serious research. I think it is key to helping us improve. We need a proper study where we are monitored pre and post exercise to determine our energy state. This should be conducted with trained athletes and non athletes as both will show dramatic differences in performance. Without such studies we will continue to guess at effects and carry on dosing blind. When you then add the respiratory degradation which limits oxygen to muscles then you exacerbate the muscles ability to operate further limiting your ability to exercise.
Looks like my body has ditched the twitch. Can we get it back? I am all over the place, can't stand for long, ten minutes then must rest. Walk 50yds (l don't know how many kilometres that is) then again have to lie down. We do need more research you are right.
Fast twitch doesn't come back but don't worry. It's not really crucial. You can get by without lightening fast response It's more likely general muscle wastage which is affecting your ability. You need to start a very gentle exercise regime which will work to rebuild muscle but that depends on a very low pred dose or none. Where you on that scale elbowpiece?
How low is low? I am on 6mg and don't get the impression that it is low enough to do much muscle building. I suspect that low is really none and a while after none.
I had muscle wasting when I was on Medrol for several months. The muscle returned when I was switched to prednisone and started walking again after an achilles problem - and that was on well above 10mg pred. Everyone is different.
I don't know how to pass on the information I have just discovered about "Steroid Induced Myopathy" without having to answer everyone's posts. I just found out that my new symptoms of proximal/muscle weakness/increased difficulty on movement when I had a hard time getting up from sitting on a chair and the toilet in the middle of the night. As you know I have been on 60mgs. prednisolone for the last 2 months because of suspected GCA. It looks like this may have contributed to these new complications. You can download this information. I hope this will address some of the questions and concerns on this forum. You are the expert on all aspects of autoimmune diseases and related maladies. There seems to be recent research that can be very valuable. I stay optimistic.
You can post the links to the information you have found as a general post and then everyone has the opportunity to see them. I wouldn't describe myself as an expert in the field - just another patient who's been there too,
Hi Seacat30. Truth is as PMRpro says we are all different. I suspect you are right that it's none and a time afterwards when you can get back to training with some confidence. I've found no research so far that regulates dosage against exercise in training to rebuild muscle. However the desire to exercise more than required for everyday life, i.e. improving muscle mass, is dependent on feeling like doing it. Often when tired, with swollen legs or discomfort and pain we just feel like sitting down with a cuppa and resting. That's ok and necessary. I feel like that, and frankly, it's only the last few days that I have felt like my old self but with drastically reduced physical ability, much weaker and with no stamina. I think i must now be over the last flare and ready to start reducing again. Waiting on bloods and now I'm on their diabetic watch list and high ferrite so more to get my head around. I'm going to discuss the controlled use and monitoring of anabolic steroids with my GP and rheumatologist when I'm down to low or zero as a possible aid to muscle re- building. Obviously not like the nutters in bodybuilding but medically controlled to assist the regrowth of lost muscle.
Research "Steroid Induced Myopathy" and pass along. Very interesting about proximal muscle weakness/increased difficulty on movement. Much information to be downloaded on muscle wasting. Just discovered this new malady while researching GCA high steroid use with 60mgs. of prednisolone for last 2 months. A necessary evil. Steroid reduction a must to regain any semblance of recovery of many faculties lost as mentioned on this forum. Please stay optimistic and pass on this information.
Wow! You described me to a T.
How so winfong. What describes you so precisely. I tend to say a lot sometimes.
Just seeing this now, and even I am losing the thread a little bit. Pretty sure it was your very 1st post.
haha. Yes, I tend to lose the thread now and then. my first post seems to fit you say so that is interesting in itself. I'm sure there is a lot of commonality in our conditions that can benefit us with more targeted treatment. It just seems that GP's and rheumatologists are winging it to some extent with standard approaches which don't relate individually. This is harmful. My GP is fully on board but the rheumy has been useless. I'm due to meet a new one and hopeful, because we need them if we have GCA to prescribe TCZ.
Luck of the draw. My rheumy's okay, my endo's great & my original GP was, not quite useless, but actually harmful. That last one's been replaced, and I'm quite happy with my GP now. If nothing else, one thing I've learned through all this is you really have to educate and advocate for yourself.
Please research "Steroid Induced Myopathy". Just discovered information while being on 60mgs. prednisolone for almost 2 months for suspected GCA. Started experiencing the proximal muscle weakness/increased difficulty of movement the last 3-5 days. Really disheartening, depressing and debilitating on top of the PMR and GCA pain. Another consequence of steroid use. Having trouble getting up from sitting (toilet) and from chair with leg and hip pain. Balance and instability at a new time low. Thankfully. I already use a walker. I have peripheral neuropathy and this adds another dimension to the already nerve complications. Please take care and I hope this contributes to your knowledge of side effects of steroid use. A necessary evil of our disease. I look forward to medical intervention with a steroid sparer to address these new complications. Have to stay optimistic!! Please pass along this information to other interested parties.
Thanks D2Q. interesting. I'll read up and come back. I want specialists in neuromuscular and rheumatology to get together and study these effects. it's long overdue. Endocrinologists must contribute and then a trained physiologist should be involved to determine reaction to exercise and our capabilities to exercise within our tolerance level. Staying healthy whilst coping with the disease is crucial to a balanced reduction of the pred. Each individual has a need to try and continue their active life even if it has to be altered and reduced but until we can detail what constitutes an acceptable level of activity this is just a guessing game.
I found both my arms and legs starting to get weak, legs due to lack of walking, arms feel heavy and sore , i used to be able to carry heavy shopping bags / grandchildren etc , now i find it hard to lift a watering can ! But i have to say Stretching bands have been fantastic for me. I checked first with my GP. I do a very gentle 20 minute session when i dont have fatigue. You tube has many.It has already started to take effect . I can walk a bit more and my arms are improving ! Good Luck hope this helps .🌷
I'm on a dodgy 7mg wondering if l should leap to 6.5mg soon. I have telephone rheumy appointment on 6th and he wanted me on 5mg by now.
What do you mean by dodgy? If you are getting PMR-type pain again - reducing will just make it worse and you could end up in a flare.
The rheumy may WANT you on 5mg - but it isn't their call, PMR is in charge and you need what you need. Forcing a reduction will just result in a flare as the inflammation gets the upper hand and you can end up back where you were.
Dodgy meaning when l was on 7.5 l was stable and ready to move to 7mg. I have been on 7mg nearly twice as long a have had few good move on down days, never consistent like on 7.5mg. Don't have PMR. GCA 2019
Doesn't mean you won't discover some PMR symptoms as you get down to low doses though - the GCA symptoms and pred dose obliterate PMR.
Check out Sarcopenia, it’s hits everybody as we age. And continues to get worse without doing high intensity strength training HIT. Find and do research on Sarcopenia.
I think it is very unlikely that many on this forum would cope with HIIT - many can't walk because of rheumatic disease and suffer severe fatigue.
this is not sarcopenia. I acknowledge that with ageing comes lessening physical ability. I know my body and can honestly say that my muscle mass, performance and physical ability was not compromised by age deterioration. It was PMR and GCA taking hold and the subsequent medication that is solely responsible for my deteriorated state. As a very capable and serious cyclist I know precisely what it takes to be fit and physically capable of strenuous exercise. It is not possible to even partially emulate the level required to get fit again let alone competitive in my current state. I am in a relatively good state compared to many others here. The many conditions faced prevent them from anything much more than gentle exercises to keep the body working. The loss of muscle has been much underplayed as a very significant factor along with the attention of professionals and consultants to this. The dosage, recovery and all such associated issues are instrumental in continuing damage with no rational approach to maintaining physical ability or improvement. We need serious research into this so that medication can be better tailored.
Yes, I fully understand that, I too have had serious PMR, now in remission. My comment was from what I have learned about Sarcopenia for those of us who can still make use of HIT if possible. No it is not for everyone!
thanks. Agreed. When I can I'll be back to serious effort, just not now.
Yes, all the best on this journey. After almost 5 years on Pred I got off about a year ago, and slowly my strength stated to come. And with the strength coming back I got into cycling and that brought my leg muscles back. As my doctor says, “Pred is a drug that does what it needs to do for people…but it’s a mean drug.” And believe me, that’s a whole nother story. Wishing you the very best!
Can confirm muscle wasting with GCA - could be the treatment as opposed to the condition. I have lost leg musclemass for sure. Last time I had GCA in 1015 the muscles came back after pred taper went to zero. Currently in a relapse with same thing - legs have lost 25 percent of muscle if not more. It sucks.
Interesting you see GCA as key not PMR. Also interesting you noted muscle came back when on zero. I have heard that from others. good to know. It is always helpful to hear others experience.
And I've got both
I definitely think that prednisone can cause muscle weakening. I don't believe it is PMR, except incidentally if one becomes much less active because of pain and loss of range of motion before diagnosis and treatment. I was suuffering from PMR for over a year, the last six months or so very severely, before diagnosis. Yet within a couple of days of starting pred I was out there walking my 10,000 steps (which would have been more for the day as back then I only counted my walk(s), vacuuming, mowing the lawn (push mower) etc., with absolutely no issues whatsoever once pain was gone. It was at this time that I took up Nordic walking and wearing a weighted vest, neither of which I can do now, after several years of pred despite always doing my exercises, taking my walks, getting physiotherapy, because of shoulder issues (I can't vacuum without pain, I can't carry even a small amount of weight for any length of time without suffering for days afterwards, and so on). The tendency to injure oneself is also now more of an issue. I do not believe this can all be attributed to "normal" ageing, which probably is a minor contributing factor.
Totally agree HeronNS. It has to be pred. I was riding and training as normal up until the PMR and GCA took over and made it impossible to continue. I must have been fighting the symptoms of both for quite sometime before diagnosis. There was no loss of strength or muscle mass. I am certain the pred. is responsible. Proper dosing is key. Without that it is a lottery as to progress or damage.
Hi d2C. Of course it would be controversial. However, if we can take steroids to control the disease it is not unreasonable under controlled medical conditions to consider other steroids to help rebuild muscle loss. I'm not after and magic bullet but any help to counter what one steroid destroyed would be welcome if possible. We'll see. I didn't mean to imply I had no motivation to return to fitness and will start turbo again soon. I do know however that what I have lost cannot be replaced anytime soon. Interesting to note you read a 700page book without sitting down my latest books are, Complexity by Mitchell Waldrop. read it 30 years ago and never bought the book. Life time, the new science of the body clock, author, Russell Foster. Islands of Abandonment author, Cal Flyn. Thinking about training and doing it are different things. there's simply no way round it. To do the ride you HAVE to do the riding. I have excess fat to remove. Wouldn't dare get into my lycra as i now look. Would be a laughing stock.
Hi winfong, I have muscle wastage too. Not sure why this happened but it started along with some weight loss as I tapered prednisolone at 1mg every 2 weeks (I did put a stone on though when on 15mg). I stopped pred in December 2021 and felt awful, my weight had dropped a stone and my wrists and arms went thin. Never found out why though. I went back on pred after visiting a rheumatologist (5mg daily, tapering 1mg every 6 weeks). Since taking pred my digestive system has deteriorated but CT colonoscopy shows no real probs. It's not a nice drug really with loads of side effects but essential for PMR.
Loving the story D2C. I am not being critical of others looking as they do really. It's more about my vanity I suppose and shame that I would look like that when I never have in my lifetime. How I am at present hurts so badly. Believe me, I know more about Lance and any number of top cyclists stories around the enhancement of their performance, and would never go there. I have an inside track on some stuff and know how much cleaner it is now. I know how to ride easy and won't ever be where I was. Just getting back will be enough someday. Trust me, it's all about the bike. My Joy is in my photo. Had the frame made for me. 936 Reynolds tubing 0.3mm thick s/s polished. Campagnolo record classic group set Almost as light as carbon and a perfect fit. You coukl buy a second hand top car for what this cost.
This is a really interesting thread and has made me realise that I’m not alone (of course I know I’m not but it’s good to hear others expressing what I am experiencing). Two years on pred for PMR and legs have lost muscle. I’ve continued doing (dog) agility but cannot run as well as I used to (admittedly I was never very fast) and am completely out of breath at the end of a 20/30 second run and heart rate high. This weekend I realised I cannot lift anything. Not because of pain but I just didn’t have the strength. I’m really fed up with it all.
You are so right. I smiled and totally understand. When not in pain one is just totally fed up with it. It is the limiting nature of our condition which so frustrates. From others here take heart. It will pass hopefully and you can then try to get some of that strength, energy and bounce back.
there is no direct way to get rid of belly fat. Overall it has to be done with combination of reduced caloric intake and exercise that increases LARGE muscle mass, meaning (unfortunately for you) leg muscles. Those are the only muscles that can significantly impact metabolism. Alternate way is to do endurance training that goes beyond 30-45min after which body uses stored fat as energy source. Neither options are ideal for us, PMR patients. This all assumes that you are at very low pred dose, because higher dose will impair muscle rebuilding.
Muscle cramps
Twitching thigh muscle.
muscle weakness
Muscle weakness
Muscle pain
