Posted , 16 users are following.
I was diagnosed three months ago with pmr. I am currently taken 10 mg of prednisone and the pain and weakness is almost non-existent. The most serious symptom is faigue and tired all the time. I have to really force myself to stay active.
I would appreciate feedback on fatigue and tiredness. Is it a symptom of pmr or a side effect of prednisone?
0 likes, 38 replies
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amy27161 daniel08939
Posted
For me personally it was the pmr. I have more energy with the prednisone than before I took it. There seems to be so many different symptoms to pmr and varied reactions to the pednisone that I think we all need to remember each of us is different. Don't forget too, that some people suffer depression with pmr and that as well can cause fatigue.
amkoffee daniel08939
Posted
I'm sorry to be the bearer of bad news but unfortunately the fatigue is from the PMR and the prednisone does little to combate that problem. The best thing you can do for yourself is to take it easy and pace yourself. You will learn through trial and error how much your body can handle. You will have times when you are frustrated because you just can't do the things you used to be able to do. But you will have to come to accept that you have a disease and that this disease has limitations. Just keep in mind that it will hopefully go into remission someday.
EileenH daniel08939
Posted
Not the pred - the PMR. Fatigue is one of the listed symptoms of PMR.
PMR is an autoimmune disorder and almost all autoimmune disorders are accompanied by fatigue. The pred only manages the inflammation and the symptoms that relate to that. The actual illness is untouched and grumbles away in the background, attacking your body tissues and making you feel basically flu-ey.
This is our "reading list"
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
and at the bottom you will find a link to this
https://patient.info/forums/discuss/pacing-in-chronic-illness-some-useful-links-that-explain-it-and-how-to-do-it-516000
That is something you have to manage by pacing - you have some responsibilities too, you can't leave it to the pred! It does usually improve with time - or maybe I've just got lazier...
molly1957 EileenH
Posted
Hi Eileen I'm currently on 3 mg I tried going down slowly to 2 & a 1/2 but decided to stick at 3 as i had a coaching holiday to go on , I'm also helping to care for my mother in law who is terminally ill and gets confused a lot , I sympathise with her there I feel like I live in a fog a lot of the time too lol . Whilst most of the time I am pain free , I suffer sometimes with lower back pain and also muscles are tender when touched , it's the fatigue that has never left me , I just feel so worn out and lazy , I do pace myself and rest in between doing anything these days . I haven't seen my Rheumatologist in a while all he was interested in was me reducing by 1 mg a month so he would be expecting me to be off pred now . Do I keep reducing slowly Eileen i feel so confused at the minute the pmr is obviously not going if I'm still fatigued is it .
Thanks Molly
Silver49 molly1957
Posted
I am not surprised to hear you are fatigued. You have a lot to cope with over and above PMR. I am at 4mg and find I am tired without any extras though my OH has a number of health problems which means he is not able to do as much as someone who is fit. It may be prudent to stay at your present dose. Why risk a flare which would mean an increase? The dose you are on is so low it would not be of concern. It may be that someone more knowledgeable than me will suggest a slight increase. How long have you been on steroids? I am now 2 years on steroids with only one flare near the beginning. It's important to be at the dose that keeps one pain free. It may be that your adrenal glands are still trying to catch up resulting in the continuing fatigue.
molly1957 Silver49
Posted
Hi silver I've been on steroids 21 months now I had a flare last April and August where I increased for a short while then reduced again , I'm happy with everything apart from this fatigue , I still don't sleep well and night sweats don't help. I drink caffeine free tea and soft drinks . What happens when you get off the steroids and are still worn out ?? Does that happen .
EileenH molly1957
Posted
Inititally I think people don't feel that different to how they felt on low doses of pred - being at a low dose of pred is a sign that the activity of the underlying disease process is quite low. But however you want to look at it - you are not as fit as you were before PMR appeared on the scene! And it does take time to recover fitness once you have got off pred. Plus all the time you are on pred and changing the dose the body has to adjust - and it isn't a simple adjustment. After stopping pred your body continues to adjust its hormones etc for some time which is why they reckon on a year post pred to really feel well again.
However - don't confuse the fatigue of PMR with the fatigue of being on low dose pred. Once you get below about 7mg daily dose of pred your body has to start to produce the body's natural corticosteroid again. It is essential for life and at higher doses of pred the body registers there is plenty of corticosteroid present so makes no more - if it did your side effects would be even greater! The slower you reduce below about 5 to 7mg the better chance the body has of the adrenal gland function returning.
It isn't just the adrenal glands themselves - it is a very complex set-up and each time you change the pred dose the entire thing has to readjust. The overwhelming symptoms of poor adrenal function is fatigue - fatigue that makes PMR fatigue look a doddle. So the smaller the reduciton and the slower you can make it they less you are likely to suffer in the process.
To be down to 3mg after 21 months is a very good result - but if it were me, now I would even consider asking to go back to 4mg if that makes you feel better and better able to cope with the things you have on your plate at present. I can feel a difference even between 6 and 7mg - the PMR is fine at 6mg, but I am more fatigued when I try to do much physically. I walked for a couple of hours the other day - I can still feel it. At 8mg I'd have done the same sort of walk for longer and felt better at the end.
Silver49 molly1957
Posted
Eileen has answered your question as I thought she would. Interestingly I have had sweats back again recently but I am wondering if it is partly the weather. We are having a Summer in Scotland and it started in April! I can't remember such a long spell of good weather in years.
EileenH Silver49
Posted
Silver49 EileenH
Posted
I'm sure you are right, Eileen. Our heating is on here when I am melting but my husband is cold. I put it off when he goes out. No heating on today😀
Michdonn molly1957
Posted
Anhaga daniel08939
Posted
As we say, we are all different. I did not experience fatigue with PMR. Fatigue hit me when I got to about 7 mg pred and my adrenals had to wake up. Eighteen months later and we are still working on that, but things are improving. On the other hand, as Eileen likes to remind us, we are all aging as we work through the PMR/pred journey, and I don't suppose I'll ever fully recover the energy and stamina that was mine before all this started.
Fatigue must be managed. Don't beat yourself up because you don't have the energy to do things you always did before. You are living with a serious ailment. Just because you don't have a leg in a cast, or you're not suffering from a bad case of flu, doesn't mean you shouldn't be looking after yourself as if you did.
Have you read Christine Miserandino's The Spoon Theory yet? Google it.
BettyE daniel08939
Posted
You are down to 10mg. and ignisificant pain after three months. Many would give their eye teeth for that.
I sometimes wonder whether it is only energetic, active people who get PMR and being one such I do sympathise and have moaned with the best, I can tell you.
I've always been a skinny, eight and a half stone at best person and the nearest I've come to hitting anyone was when a friend whom I'd not seen in a while told me how well I was looking. I knew that I had a fatter face because of Pred! I had dragged myself to an event and couldn't wait to get home and lie down so this was not what I wanted to hear. but it's not just other people who don't see the whole picture.
When the Pred. works well to control the pain it is hard to convince ourselves that we should not be back to normal but we are not and it can be a slow and an up and down route back to normality.
Some of us are hyper on Pred. (Me) but some are weary and if you feel tired don't blame yourself. Do what you can when you can and,if necessary, prioritise.
Be kind to yourself and, if possible, be patient.
yossi5684 daniel08939
Posted
The symptoms I experienced when I had PMR were, in order of severity, muscle aches, fatigue and weight loss. All seemed to disappear when I was on prednisone. When I'd taper the dose down to 0 (or too low to keep the symptoms under control) the muscle aches/stiffness would recur, but not so much the fatigue. It seems like everyone experiences PMR the prednisone to treat it differently. Perhaps the dose of prednisone that you're on is too low to control the symptoms, and that is why you are experiencing fatigue.
Michdonn daniel08939
Posted
Good luck.