After 15 months on Pred. I managed to wean myself off them. I always had aches and tiredness, but as it was not unbearable and I rested a lot I thought this was better than remaining on steroids. I stopped the steroids beginning of April ‘23. I still feeel tired all the time, and I am slow and unsteady on my feet. Hold husband’s arm when out, or lean on the supermarket trolley. I always feel that I may fall over. 15 minutes a day of gentle yoga seems to help. I am left wondering, do I still have PMR, or is it old age (78 years) ? Since having PMR I feel as though I have aged ten years. Maybe I should just accept that I am slowing down and be grateful it is nothing worse, and not mind that I am resting so much. My GP only speaks to me over the phone, and refused me a blood test when I requested one, saying the results are not reliable.
Thank you lovely group, I am I think putting my thoughts on line to enable myself to move forward. But always value your advice.
Fetlar 72.
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Fetlar73
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15 months is very quick to be through PMR…..so you have any PMR type symptoms? Or is it just fatigue, if so it could be adrenals still struggling, they can take anything up to year alter finishing Pred to be up to speed. .
Thanks Dorset Lady. Yes my joints? Muscles? Ache and difficult to walk when I first get up. But not bad enough to make me reach for painkillers. Just annoying that pain is always there especially when I stand from sitting. But tiredness is more annoying. I guess you could be right that my adrenals are struggling, but if they eventually get back to normal that is good news. Time will tell so I shall try and be calm and patient. Thank you.
My first reaction was horror at your doctor's response. Blood tests indeed are not reliable to confirm PMR. But they are useful to find out many other things, including a possible reason for your ongoing fatigue. If you asked for a blood test to find out whether you still had PMR then the answer about unreliability was accurate enough. But the next step the doctor should have taken is to ask why you were asking, and then run the appropriate tests to see what else may be going on. I'm 76, have been taking pred since I was 68, and I would not accept feeling the way you do as "normal" old age! (current dose 1, tapering to 1/2 mg)
You say you always had aches and tiredness. Do you feel worse since you stopped the pred?
I think it's often very instructive to write out exactly how one is feeling at a particular time, whether you want to share or not.
Thank you for your kind reply. I wish you well with your tapering and it may not be long before you too are off the Pred. No I do not feel worse since stopping the Pred. About the same as on them. I just thought I would see an instant improvement, but guess my adrenal glands may not be working as well as they might. (As Dorset Lady states). Meantime I think I shall askmy GP to check my bloods once more. Thanks.
I agree with PMR pro's comments 100%.If a little pred makes your life better do not feel bad taking it.
You get one life so please enjoy it.
As we get older we do get more tired and suffer things we never had when younger. But its important we use whatever it takes to be happy and stay positive we all understand the journey !
It takes time even after stopping pred for your adrenal function to catch up - as much as a year some say though it does depend a bit on how long you were on it.
However - the question is: is it getting worse or is it stable? Were you better on pred? Have the aches always been constant since the starting dose?
But no - rest is not an alternative to pred, PMR is due to inflammation, pred manages that and rest is an add-on to manage the fatigue of autoimmune disorders. If a lowish dose of pred makes life easier and your quality of life better - we think there is nothing wrong with that. As already said, 15 months is a VERY short period for PMR, 2 to 3 years is a more usual short episode and patients who are off ored in a year are known to be at a far higher risk of relapse.
And like HeronNS, I'm appalled at the dismissal of your doctor - glad he isn't mine!!!!
Thank you PMR Pro. It is good to hear that unlike my expectations, it can take some months to wait for the adrenal glands to catch up. Also, no I don’t feel any worse off the Pred. About the same Muscles ache when standing up from sitting. Very stiff in the mornings, when I first get up, but that has always been the same. I shall try to be more patient with this illness, as for my GP I shall try again and ask for a blood test. Thanks again.
It is more his dismissive attitude I object to - whether the blood test would show anything is another matter but the blanket "results are not reliable" isn't acceptable. They are keen enough to rely on them when it suits them!!!
Don't ask- tell him. I had to tell my rheumy I needed an MRI or CT scan. After 6 weeks of trying to find the results, turns out I have 2 fractured vertebrae and 2 bulging discs. ER doc found the report which my rheumy had not read. Your body. Be insistent. Like a dog with a bone. Cheers my friend!
Your symptoms sound very PMR-ish to me. Fatigue can also be caused by ongoing inflammation that your body is fighting. I agree with others, and question if your PMR was ever truly controlled given the quick timeframe you came off Pred. As others have said, I would fight to have my symptoms investigated. They can test adrenals, they can test for inflammation, they can trial Pred (at an apppropriate dose!) ti see if it makes a difference. I do hope you are not suffering needlessly. Hope you find answers!
Joints/muscles could be low level PMR. But if it goes off and doesn’t require painkillers then it might be age related… but don’t let it get out of hand just but case it is PMR.
It strikes me that you may have both. A bit of PMR and adrenals not up to scratch. I think I was the same this time last year. It is so confusing. Have you thought of taking 5mg for a few days to see? The fatigue is one thing but to have the aches and unsteadiness with it, quite another. My Rheumatologist said that it is not unusual for some to stay on low doses for ever. I think being able to join in and enjoy is everything. There is no prise for getting off pred if we still need it.
Can I suggest you ring your reluctant GP and tell him you want a full BT plus CRP and ESR as something is going on. Then make your own decision as to whether you try pred for a bit.
When you say the morning muscle aches and stiffness have "always been there", do you mean since the start of what was diagnosed as PMR? Or since you started Pred? Or even before either of these?I too am wondering if you still have PMR.
What happened to lead to that diagnosis in the first place?
Thank you I did have a second opinion for a consultant Reumy who confirmed my GP’s diagnosis via a blood test.. the aches and pains have been with me since diagnosis. I think I agree with the people on this forum who say I might still have PMR and that it can take a year for the glands to recover once off Pred. I shall have to be patient but I shall refer myself back to GP or Reumy consultant as I paid to see him as I don’t have a huge amount of confidence in him! Thanks again for your advice.
You do not mention a Rheumatologist, I see or speak to mine every six months and have a blood test beforehand. That has been going on since 2016. The original diagnosis was GCA which has been under control. I have some of the symptoms you describe but am assured it is not PMR but probably spinal claudication. As quoted many times getting older is not for the fainthearted. I am 91 and agree.
Sorry to jump on this post but I am the same, I could have written most of this post. I started 2019 been off pred twice I took my last pred in April too, I am managing, I am 57 ache, and I hurt lost muscle, need to work at getting fitter, but it's a vicious circle, do to much have to rest, I want my other life back lol, but I will keep moving forwards pred is there if it gets too much, but to be honest I don't want to go back on it, I was told by someone it's like a driping tap and bucket when the bucket fills up and over flows you get a flair, pred mops it up, I just need to work out how to turn the tap off. Keep at it and keep moving even if it's sat in a chair doing exercise, it keeps your muscles strong, you can rest after you have done it. Watch your food as it affects some more than others and can make you feel worse keep a food diary.
"I just need to work out how to turn the tap off. "
Since that is the crux of a cure for PMR and GCA - or any other autoimmune disorder if it comes to that - if you do manage to find out, please tell us all and you will be a very rich person!
Thanks for your reply. Yes we do sound alike. I am a lot older than you 78 this month. I do find that gentle exercise makes me feel more mobile. I do gentle exercise Yoga mostly sitting on a chair. Due to my age I do 15 minutes of yoga a day on YouTube “yoga for osteoporosis”. Although I have not got osteoporosis the exercises are also to prevent osteoporosis. I agree with you that , we are what we eat. Probably we are the first generations that ever ate processed food. I try to eat as much organic food as I can afford, and broadly follow the Mediterranean diet with lots of fruit. It does make a big difference to general health. I do have the odd glass of wine though, I am not a saint. I feel sure you already know a lot about food values. As we appear to be on the same journey I hope that your “tap” is already turned off and that a few months from now our adrenal glands are no longer stuttering, but purring along ! I intend to let the forum know my outcome.
When I was dizzy and tingly a couple of months ago my great doc did a really comprehensive blood test. I suspect yours will try and get away with the least (cheapest?) one. You need to have ESR and CRP (if they allow both) to check for inflammation. Then what they seem to call a full blood test. Then all the other things like B12, cholesterol, hba1c for diabetes and others, like liver function.
Experts is there a name for a comprehensive blood test - the sort of thing you'd expect as a regular check up if on steroids?
(The forum advised it was my adrenals and I think it was cause it got a lot better after a fortnight. But the blood test showed higher cholesterol and pre-diabetes again so I'm back on low carbs, this time with low fat.)
Not really that I know of. There are "comprehesive metabolic panels" and "full blood counts" as well as other blanket names but each covers only one aspect of a diagnosis. The full blood count is a range of haematology tests and actually needs an add-on if you want to know more about white cells for example. Some idea of WHAT you are looking for is usually required, even by the lab in some cases or some more outlandish things will be turned down as not appropriate. They are charged for separately and some are very expensive and require to be sent to another more remote lab.
In light of PMRpro's reply that there's no blanket range of tests, perhaps ask for blood tests that relate to any possible inflammation eg CRP/ESR and to tiredness and unsteadiness eg B12, HBAIC plus full bloods. Can you speak to a more sympathetic GP? If not you'll have to emphasise how this is impacting on your ability to live independently.
LIke the others said, tests to figure out a possible reason for your fatigue and unsteadiness seem perfectly reasonable to ask for.
As for the inflammation markers being unreliable, that's not entirely true. If your levels have increased, that is useful information. By the same token if they've gone down, that's useful too. It's true that not everyone finds those markers correspond to how they feel, but enough of us do that it's a good idea to have them done often enough to see any pattern. Depending where you are in your journey, and how you are feeling, you might have them done more often in early days, and at lengthening intervals as time goes by. (For example initially I had basic bloodwork done every three months, now it's annually. Also at first they did ESR but switched to CRP which seems more accurate for me - can't have them both done at the same time!)
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