Hi, first post and looking for some advice please.
First diagnosed around March of this year and started on 15mg prednisolone reducing by 1mg every week. Although not so bad, I did struggle more some days but followed doctor’s advice with a couple of weeks where I had to go back to the GP and stay on the same dose for 2 rather than 1 week. However, I have now completed the prednisolone and the pain has been getting worse since the weekend. Today I spoke to my GP. He has said to go back on 1mg for another week or so before stopping and to tackle the pain through stretching exercises. I do a physical job, which is hard to manage with PMR. I walk regularly when healthy.
I would be interested to know if others have tried stretching exercises. If so, what has been helpful.
Thank you.
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Whittley
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Are you saying that your doctor told you to reduce to zero pred in less than five months? Doesn’t he realise that PMR lasts at least two years for the majority of people and in most cases a lot longer, the average time is 5.9 years. It sounds like you are having a PMR flair, if it is PMR you really need to squash the inflammation probably with a lot larger dose than 1mg of pred. Stretching exercise are not going to get rid of the PMR unfortunately, unless it is not PMR.
I have just checked as I thought perhaps I’d got confused with the dates but I collected the first lot of pred the end of February this year and was supposed to stop last Thursday. I carried on a few days as I was struggling but of course, it got worse. The GP thinks I should not carry on with steroids but I can’t imagine going on like this for another year and a half
You poor thing. I had the situation where my GP kept saying I had a viral infection. I just got worse and worse. In the end I paid to see a rheumatologist privately who diagnosed PMR in about five seconds and gave me pred. I cannot imagine continuing a week let alone more than a year with the pain I had. What is your current doctor suggesting you do about the pain if you do not take pred? No other medication really helps PMR. Can you go back to the original doctor? You really need someone to diagnose you properly.
I am 54. About 18 months ago I started experiencing severe pain in my neck when I moved it, stretched etc. I was referred to physio but after a few months it was no better, in fact worse. A few months later the pain was in my hips, knees, shoulders as well as so severe in neck I feared passing out if I moved. I couldn’t straighten up, couldn’t walk, I found lying and sitting equally painful and I was so tired. In February 2019, I had a blood test and this seemed to indicate it might be PMR (although I’m not too sure what the test result was or what the doctor saw to show this. I need to learn more about all of this!) I was prescribed pred and my GP said if it is PMR I would feel improvement very quickly. He was right and I did but my current GP seems very anti steroids. Perhaps he’s not convinced it’s PMR as it was a different doctor who first diagnosed this.
It certainly sounds like PMR - but it lasts a long longer than your GP seems to think. And all the time you have it you need to be on Pred - at the right level - to control the inflammation.
I suggest you read what I sent you and understand your illness - asking us any questions - and then go back to GP to discuss the way forward.
Welcome to the forum. Your doctor is on another planet!! Sorry but never heard of such a ridiculous taper schedule!! I was diagnosed in Oct 18 and started on 15mg and I only got to 9.5mg two weeks ago. Both my rheumy and gp gave me this taper schedule!! You need to go back to gp and tell him you need to start again.or change doctors!!
We are always here for any questions and there is always one of us available to help. Take care. YBB
Because I was "supposedly " young my gp referred me as soon as he diagnosed pmr. I wasnt that young, 55! My rheumy decided that gp was correct and they agreed on the taper schedule. The rheumy had quite a few women in their 40's on his list. You do need to see either your gp again or another in the practice as the one you have seen obviously knows nothing about pmr. Like I said earlier feel free to ask any questions and we will try our best to help.YBB
Hi Whitley
This seems extremely out of the ordinary & you are now paying the price.
I see Dorset Lady has sent you the Guidelines, so you must return to your Surgery & either see the original GP or someone else in the Practice & basically you will need to start again.
I am so sorry this has happened to you. Have you had blood tests either at the beginning or since?
Please make an appointment as soon as possible & let us know the next step.
Thank you. I’ve not read through the Guidelines yet, feeling a bit sorry for myself and struggling to focus. I had blood tests in February which is how my GP came to diagnose PMR.
We all feel a bit stunned when we get the diagnosis. For some people it can take years to get a diagnosis and then its a relief for someone to finally put a name to all your various ailments.
The blood tests were to check if you had inflammation markers. PMR in the majority of people have raised markers. The Dr based on symptoms and blood tests, trialled pred and it seemingly worked. Good work to there. Then it fell to bits. Try and get some rest if you can. You have come to the right place. Take your time and get to grips with all the paperwork we have sent you in your own time. Ask questions in your own time.🌻🤗
Stretch your way to pain free PMR??? That is pretty odd!! I do not believe it will work.
It is always a good idea to move your body as much as you can, but there are some days I can barely get out of bed let alone do stretching. Also, the taper seems too fast. Have another talk with this doctor.
This is not the first time he’s suggested stretching exercises rather than take pred which is why I posted and asked the question. I don’t think I can manage much stretching at the moment either.
I would also say that if you have been on Pred for that long you should not be stopping taking it like that as those poor adrenals are completely confused
A steady reduction from start to finish like that is fine.
Dear oh dear. I am so sorry you are being made to carry this condition. Some people are lucky enough to find PMR inactive after a year but it's 1 in 5...5months is ridiculous. I would definitely take the guidelines for PMR treatment into the surgery and the research that argues pred is not as bad as some drs (and patients) believe. If you get no action make a complaint. The Dr is being negligent is the reduction was around 1mg a week. I have been at 6mg for almost a year.
Many have already provided you with great suggestions. I, myself, refused to keep seeing a rheumy after 3 visits because she was beyond unprofessional, and due to my age constantly eluded I may have something other than PMR (I was diagnosed by my lovely GP 3 months before seeing her).
She demanded I follow a textbook taper that resulted in a flare, after which she upped my pred dose for 6 weeks before I attempted tapering again. She refused to give me 1mg pills so I could taper slower, and accused me of lying about upping my pred dose previously (even though she had computerized records available to her. She was pretentious and talked down to me when I would question or challenge her. She gave conflicting information that added to confusion.
Needless to say I stopped seeing her, despite her calling to apologize for incorrectly asserting I increased my own pred dose. Too little to late. I’m now overseen by my great GP who is knowledgable (his colleague has PMR), and patient with a good sense of humour. He lets me control my taper and has on more than one occasion advised me to work towards 5mg, not “0”, at my own pace. No pressure, just support and scientific expertise rolled into one.
All this to say please consider getting a different physician. Until then go to your local hospital and get a prescription for pred. No need to be suffering at this stage, and unchecked inflammation can lead to the development of GCA and other serious outcomes.
Advocate for your health, stay strong!
To heck with stretching. Take the prednisone and nice long warm baths. Stretching may just keep your body agitated
Me too - had the shoulder and upper arm and leg pains from March, but the GPs were like a confused anthill, suggesting everything from frozen shoulder to lupus. If they had looked at my history of GCA, they would know it was PMR. Frustrated, I got them to refer me to a rheumatologist and was diagnosed in June. Now I am on prednisone, the pains have gone, but thanks to good advice from panel - DorsetLady - I am coming to terms with what to expect and how to manage it.
What a pig’s ear your GP has made of this! I understand that you are actually feeling too poorly to even take in all the information you need to understand your condition, but basically, if it’s PMR you need steroids : full stop! Then, once you start to feel better back on the pred. , you can begin to inform yourself and find the right doctors for you and take control of your treatment. Unfortunately, we can’t control the PMR, it does what it wants! I was 52 when I got it, 7.5 years ago and it is showing no signs of diminishing or even going. That doesn’t mean that this will happen to you- there is huge variation in our experiences!
Hi I started 20 mg in March and so far have got to 13mg your doctor is cruel would like to see him her trying to stretch with the pain your in . Hope you get sorted soon .
I was diagnosed in January ‘19. Put on 20 Mg for 4 months then started to reduce. I am on 8 mg. and reducing 1 mg every two weeks. Feeling pretty good. Like my
I think it has all been said! I was diagnosed around same time as you and I thought I was reducing quickly but I’m on 4.5 pred and going down in two weekly stages at .5 reduction each time. Good luck! Are you on Alendronic acid as well? I hate all the drugs but it’s the only way forward.
I take pred, Alendronic and calcium tablets too. I know what you mean, I hated taking them but without them I’m not great. You have reduced quite quickly too. I hope it’s going ok for you.
Hi Whittley were you diagnosed with osteoporosis. Otherwise there is no reason for Alendrotnic Acid .. (I have osteoporosis and refused it anyway) it is a VERY strong drug. And often prescribed unnecessarily. My doc (minnesota) was all for it and now has come round to thinking it is not so good.
There is a great book called Your Bones. by Lisa Pizzorno
Good luck. where are you_ ? Sorry you are getting bad advice!!!!
Hi I’m astonished that your dr. suggested you stop taking Preds. so early.
My doctor told me when I was diagnosed last October that it could take about 18 months to 3 years before I felt better and that some people have it for life.
I have never heard of stretching to relieve pain.
After 10 months I am now on 5mg tapering from 15mg.
I still get the aches and pains first thing but within the hour the steroids have kicked in but if I stopped them I would find it very difficult to carry out every day chores.
Did you have a blood test to detect Polymyalgia as it seems very unlikely that you will be better so quickly.
Your doctor obviously knows nothing about PMR and it would be helpful if they admitted that. Offer them some bedtime reading on management from an expert rheumatology group in the field:
An expert would have you still at round about 10mg/day at this stage. If the GP can't get a better handle using this info, find another who does know what they are doing.
I will grant you that an aquafit class in a warm pool followed by Pilates or yoga kept me mobile for 5 years (I wasn't diagnosed so didn't get pred). It did nothing for the pain and not a lot for the stiffness but it was slightly better. There was no need for it - pred works well to manage PMR - we'll help you manage pred.
And if put onto a short course like that - there is no justification for AA at all. There is little justification for AA anyway - not until you have had a dexascan that shows osteoporosis is likely.
I too was diagnosed in March this year and put on Prednisilone 20mgs, after two months my doctor reduced to 15mgs and I felt I had been hit by a train. Went back up to 20mgs which did not touch it so went up to 25mgs. I have now got down to 23mgs , 1mg every two weeks without a flare and will continue until I get to 20mgs. I can not believe that you have decreased your Prednisilone so quickly, I would have jumped off the roof by now.
I am sorry your dr doesn’t seem to understand PMR. I got my dx last month at age 48. I finally have an appt with the rheumatologist on Monday. My PCP gave me a 1 week steroid blast with 2 refills which didn’t follow any kind of PMR protocol. But I had read up on the typical treatment so I have been taking 20mg a day and rationing what they gave me until I can see the rheumy. It has helped a lot but I am not pain free yet. If I had to stay with my PCP, I had some articles with info on the proper taper to bring but in the end I got an appt with the rheumatologist. The only thing that helped me outside of the prednisone has been a hot tub/long hot shower. The heat would give me some relief from the pain. Physio, exercise, etc. did not help at all. I hope you can find a dr. who will treat you properly and with a proper slow taper!
Hello Whittley, before I was diagnosed with PMR I went to see a physio who used massage and ultrasound. She gave me a program of stretching exercises to do at home. THIS MADE THINGS MUCH WORSE!! Pain so bad I cried all the time and couldn't dress myself or get into the car. Lots of excellent advise on here. Good luck with your GP x
Hello Whitley, when I read your tapering plan I couldn’t quite believe what I was reading. It’s clear this GP has no idea how to treat this condition. I’d book an appointment to see another GP at the surgery, if that’s not possible then request this useless GP refer you to a rheumatologist. You are borderline atypical so you can be referred. I’ve been in the zero club for 1.7 years but had active symptoms and therefore took Preds (tapering from 15mgs) for the 4.5 - 5 years it was active. Also as PMR pro says, why has he prescribed A A when you’ve been on Preds for so little time. I was prescribed AA and stupidly took them for the 1st 11 months until reading how bad the drug is for you on this forum. I stopped taking it and have had a dexa scan and my bones are fine. I’m shocked that your GP wants you off the Preds so quickly yet is content with you taking AA, (please do look up just how bad for you AA is). Keep up with the calcium...add to that magnesium, vit d, vit A and k2. Good luck and do let us know how you get on.
So I’m back on 1mg pred and, I guess unsurprisingly, I am quite stiff and the pain in my neck, arms, knees and hips is back. It’s not as bad as before the diagnosis but it’s there. I’m also very tired but that may be as much to do with a busy weekend at work as the PMR. Feeling a bit nervous about seeing my GP, I’m not good with confrontation. I live in a very small town so I don’t have a choice of doctor. Thank you for all the advice, links and encouragement. It has been very helpful and I feel more prepared and confident about seeing the doctor. Think I might ask about a referral for the rheumy. Might help to get a different opinion on what’s going on.
Thank you for all the responses. Today I’ve had a good discussion with the GP. I’m going to up pred to 5mg and try that for a few days and if that’s not enough, I will go up again. Then once I’ve found my level, stay there for around 4 weeks before starting to work back down.
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