I have lost a lot of muscle in upper legs they feel very weak even though I use exercise bike walk a lot and am always on the go. I am 66 yrs fit before going on prednisolone thin sticks for legs. On 3 mg now. Been on pred since jan 22. That’s 6 months. But legs getting worse. Is it possible to get some strength back and muscles when I stop staking pred
leg muscle. All gone : I have lost a lot of muscle... - PMRGCAuk
leg muscle. All gone
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zoey12
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Hi Zoey. First things first. I have read your Bio. thanks for filling in. Pred. won't CURE the PMR. it only manages the inflammation which needs to be suppressed. Secondly, how do you show with symptoms that were diagnosed. Thirdly some people lose muscle faster than others and that definitely is down to pred. I am one such. I believe muscle can be rebuilt but I think one needs to be off pred. first. Exercising sufficiently to do so whilst still on pred and suffering PMR will probably have a negative effect rather than positive as it will deplete your diminishing store of energy and possibly contribute to a flare. If you do have PMR then there is nothing else that is so effective. PMR will/may go into remission but no one can tell you when. No one likes what it and pred. does but there are ways to manage side effects. Don't give up hope. Read FAQ's and other posts on the subject. Welcome to the club no one wanted to join.
DorsetLadyPMRGCAuk volunteer
Hi,
Some info on here re exercise -
healthunlocked.com/pmrgcauk...
..and also look at related posts….
PMRproAmbassador
It may be worth speaking to your GP and asking for a physio referral to be given targetted exercises.
That happened to me in a similar timescale when I was put on to methyl prednisolone (Medrol) but when I was switched to prednisone the muscle rebuilt in months just with walking. I'd not had a problem with prednisolone previously either, The muscle returned while still on pred at above 10mg.
However - you are a low dose already so I would think that with time it will come back - but it takes longer to rebuild than it did to disappear so be patient.
ust wondering - did your PMR start post Covid?
Thank you. Yes my pmr started. Oct 21 thanks had just had flu vaccine and got a bad cold around September. So I had covid vaccine in feb 21 and may 21. Then a bad cold chesty a d antibiotics around September then flu jab. Then these pains pmr they say gp. I wonder if had too many virus in blood at once. Who knows.
No - not quite what I was wondering.
There is no single cause of PMR, it is a cumulative effect of repeated insults to the immune ssytem over a lifetime. Eventually something is the straw that breaks the camel's back and the immune system goes haywire and turns on the body, attacking it and creating the inflammation that causes the symptoms.
Your GP may never have met this - it really isn't very common. But unfortunately the alternative is untreated PMR and it isn't nice either, very painful and disabling. And it isn;t as simple as pred bad, no pred good.
As well as asking for physio advice, you may need to up your protein intake to help.
Touch wood no symptoms since taking pred. It I would have liked my gp to have told me what I was getting into. With pred. I was told nothing.
To be honest I don’t think they know side effects, certainly not every one, and even if they do, they probably don’t want to put you off taking them.
I can understand. People like me prefer to know everything they can and then make a choice or at least know what the implications are even if there is no immediate alternative. It doesn't change the outcome but you know what to expect. I'm sure no one knows ALL the side effects especially as we are all different in how we react to it. I think DL is right in that they may be innocently trying to protect and not scare us from taking the one simple drug that can help.
Yes I am one that needs I say needs to know the facts. Then I feel more in control even if I’m not. It would have been my discussion to take pred and all its side effects but I was told nothing and that I am very mad about I should have been able to make an informed choice. I have seen 5 different doctors at my health centre of which none want to know about my side effects they look at me like I have 2 heads. If it’s not life threatening then they should tell you the side effects because they do know them
That's certainly the case for duration of PMR . Most who quote the 2 year myth - and some make it even shorter! - say they didn't want to upset/depress the patient. Which is fine - except the the majority of patients do take longer and then get upset, especially when the doctor tries to shift the blame to the patient. It really does have a detrimental effect on the trust relationship and that is crucial for a successful partnership in managing any chronic illness.
Whether that also applies for side effects I'm not sure. These days I think they assume we will look it up and they really don't have the time to go through it all in detail with every patient. In a good practice it would be the role of a specialist nurse but many don't have one. My experience of rheumy nurses in the UK was poor - here they are a bit mixed, most are brilliant and they do listen to what you say but a couple are less good at patient communications. Every pack of pred has a PIL - do any of you read it though? And there is always the pharmacist if you make an appointment.
I read every one because i want to know. It's not responsible to assume that the patient will look things up themselves but I think you are right
Thank you for your help. Yes doctor s don’t tell us. Because yes we get upset but if they had been honest in first place I would still trust my doctors but I don’t now. The instructions in the tablets dosnt list adrenal glands stopping working. And possibility of never working again. That’s quite serious And dosnt mention all side effects.
That is as much as anything because for the vast majority of patients it is used short term and it is only repeated frequent short term use that MAY result in adrenal suppression when used over many years. Long term use of pred isn't something they do in anything except GCA and PMR - unless they are endocrinologists using it for replacement therapy in adrenal suppression for other reasons.
Leeds did a study and discovered that it takes much longer than it is usually said for adrenal function to return - and that included the endocrinologists. What they learn at medical school sticks - and they aren't very good at working out that the problem may not be that this patient doesn't have PMR but RA or something which would be their usual assumption I think, rather than that adrenal function is a limiting factor. Research in the last few years has suggested that the physiological dose isn't 7 or 8mg as they thought - but as little as 2mg can be enough for day to day functioning. It only gets noticed in an emergency - and in the UK they did react to that being a bit more common with the new steroid card.
Interesting. You have just made me realise most people don’t take it long term. So that’s quite frightening that we are the few that do take it long term. That makes me more nervous about it. I suppose they use it for r a also long term. I am thinking it’s not meant to be used for very long really. They just don’t have anything else.
No - plenty of other drugs are available for RA and other inflammatory arthritides so they also only get pred short term to sort out flares. There are wuite a lot of people on long term pred but since they are on it for adrenal problems anyway, they don't have to taper off.
I had already lost sight in one eye before I was diagnosed (long story).
The Pred saved the other one, but it took 2 weeks of extreme worry before everyone was sure that was a certainty.
That I can assure you was the most frightening fortnight of my life -going to bed each night not knowing if I would wake up the day completely blind.
Taking Pred although not pleasant was certainly not frightening.
But I guess it’s all a matter of perspective.
Sorry if I got this wrong. But. Does this study show that adrenal glands may not work properly maybe Once we come off pred. if we got in a emergency situation. And only then we would find out if they work to full potential. So doing exercise etc isn’t enough to prove to myself they are starting to work. To full potential.
For the vast majority of people the adrenals do start working again ..
But you are overthinking something that may or may not happen in the future -and to be honest that a pointless exercise -and not good for you nor your illness.
I appreciate you want/need to know what is going to happen-but better to concentrate on today.
This link simply explains what happens to your adrenals when you are on Pred and what happens when they need to start working again -
It might not mention adrenals specifically but it does state the following -
“If you take it for more than three weeks, you will get a blue ‘steroid card’. Always keep it with you and show it to any doctor or nurse treating you.”
If you’re not sure what that means then you can ask…doctor, pharmacist or us…
Yes that’s. The doctor said he would get me one from reception in due course. But didn’t I asked at chemists weeks later. They didn’t have any in So I have just put notes on my I phone in case of emergency
You can download one from various sites on the internet:
As PMRpro says online -also on charity website and they send the older blue one when you join and renew membership every year
Thank you for your reply it’s really much appreciated. I was pushed by gp to go on it scaring me that I could get gca and go blind so I took it. I hope you manage to get off it soon. You are right to question the diagnosis you need proof it is pmr. Or not. Second opinion maybe. I am taking turmeric. Ginger garlic each day and may go and get herbs from Chinese shop. But I am a bit worried they may have steroid s in them. So it’s difficult. I really didn’t know what I was getting into going on predoslone. What a eye opener. But I am reducing faster than my g p told me to. Not being silly. But every 3 weeks gone down instead of 2 months going down. On 3 mg. I intend to come off it hopefully and never go on it again. But take either Chinese herbs. And things like garlic ginger turmeric and anything else I can find out about. And go from there. It may not work and I may end up back on pred. Who knows. But I have to give it a go. Good luck yourself. Investigate your condition. Ask questions. And push to lower your dose if you can. Take care thanks for replying
So glad you are off pred now. Hope you never have to go back. Watch your general health and diet it’s got to help a bit. For ever. I m afraid. Look at turmeric if pains come back. And other. Possibly things. Before jumping to pred. I know I will if I ever get off this pred. It has done irreparable damage to my body on the out side. Figure wise which is not possible to come back how ever much I excersise and I fear what it’s done inside
Exercise won't help pred-related weight gain. But a low carb diet will.
Yes I am beginning to think nothing really helps it’s just there to make you feel like you are doing something positive to help. I have exercise d and eat correctly most the time leaf a active healthy life well a normal healthy life. Nothing has stopped me getting all the side effects plus more up to now. It will be the eyes sugar levels next and blood pressure as I have been on it 6 1/2 months now. What hurts is some of these will never go away. It’s not possible. With me for ever. And I was holding up quite well for my age before last sept Pardon me for being bitter. But I am. And a really regret taking pred
There is worse than pred-related weight gain. But just healthy diet doesn't work with pred, must be low carb
don't we all, but there really is very little alternative if any. I think you'd be there even if he'd told you everything so just move on and try to learn as much as you can.
Zoey. Please don't over scare yourself about what you don't know or are able to predict. Consider that you truly know very little about how your immune system works at the molecular level and genetic level. You don't have to as your body does it for you. Now consider that has been undone by this condition which has turned your body against itself. This drugs helps to control that. All drugs we take have some effect good and bad and each of us has a unique way of reacting to these influences. Some reactions are more extreme but there are workarounds and fixes that help. Recovery from the effects can be achieved but I think one needs to be off pred. to achieve these. Worrying about what you can't change for the moment is only stressful . Sadly, we all need this drug at present. Concentrate on reducing sensibly so that you don't have a flare and have to increase accordingly.
Thank you very much for your reply s. Sorry for getting upset. But thanks for being there. I am so glad you got off pred. 13 years. I hope you never have to go back on it. Take care good luck
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