I was diagnosed by my rheumatologist in December 2022 with a fairly aggressive tapering schedule that I had to abandon at 6 mg. When she diagnosed me, she did say that she felt I was too young for PMR but that my symptoms were classic PMR. I am 58. I was reluctant to go on prednisone but couldn’t take the pain. I started at 10 mg. After the first tablet, I felt 95% better! She wanted me to taper 2.5 mg a week. I went to 7.5 mg and after that every taper caused pain. I was at 6 mg until last week waking up in some pain which dissipated during the day.
I had a follow up appointment with a locum that is covering for my doctor for maternity leave. He started the appointment off with an inquisition as to why I thought I had PMR and that I was too young for it, and that prednisone is evil.
I was gob smacked! I asked him if it wasn’t PMR if he had any other ideas. I have a neuromuscular disease as well but the neurologist has insisted that the pain that I’m experiencing is not due to that. In the end, the doctor agreed to treat me as if I had PMR. He put me on a different taper schedule starting at 8 mg for two weeks then 7 mg for two weeks and then slowing after that to 1 mg down once a month. We’ll see how that goes. One of the things he mentioned was that injection of prednisone into the effect of joints would be better than oral prednisone. Considering I’m incredibly needle phobic, that would definitely not be better for my mental health! I can’t find a lot of compelling research on PubMed about injection for PMR.
I’m in Canada. We have a major crisis with GPs and haven’t had one regularly for the last four years.
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I’m in Canada. We have a major crisis with GPs and haven’t had one regularly for the last four years.
To be honest, doesn’t sound as if your Rheumies are up to scratch either….. between the two of them - what a horror show…58 is certainly not too young, and tapering 2.5mg a week, just confirms Rheumy knows very little about PMR.
Even to reduce every 2 weeks is likely to be too much…. 1mg once a month might be okay…. You’ll have to see..
Maybe have a read through this, so at least one of you has an idea what’s going on -
Thanks! I found this group shortly after I was diagnosed and subscribed. I am fully versed in the DL method of tapering and have kind of done my own thing based on that. I’m sure the rheumi won’t be happy about it but I can’t afford to be incapacitated as it reduces my muscle mass which is already affected by my other issues. I need to be able to move.
I collapsed 3 times recently and managed to get to the Emergency Department by taxi. I was admitted straight away. I had a plethora of tests, MRI scans etc, was kept in for three days. No big answer as to why it happened unfortunately. Was like being struck by lightening.
The hospital staff were great, I nearly didn't want to leave. I was sitting in a waiting area to see the staff who would release me when a guy approached me with a bowl of soup and bread. He said, you looked as if your needed this!
Firstly it appears your doctors know nothing about PMR. Secondly it is a disease of the muscles, not joints. If they spoke Greek, polymyalgia is poly = many, mi = muscles, algia = pain, ie pain in many muscles NOT joints. PMR normally lasts a couple of years or more. When you first started at 10mg and she wanted you to reduce 2.5mg a week, you would have got to zero in less than a month!!! If only.
thanks! I know, it doesn’t really make sense to me either. She told me that most people with PMR were on prednisone for at least a year sometimes longer and she gave me 200 tablets so she didn’t expect me to be off of it in a month. I think it was just a Hail Mary to see if I was able to taper that fast then it was likely not PMR. I tapered down to 6 mg over five months I ended up in pain and have gone back up to 8 mg for the next two weeks to see how I do - I’m currently pain-free at 8 mg.
I found if I started having a flare, upping the dose by 5mg to really knock the PMR on the head, then reduce back down again after a week or so, ideally in two step say 1mg or so above the dose where I first had problems.
Steroid injections are a recognised management strategy for PMR - but NOT into joints. They are given as deep intramuscular depot injections on a monthly basis. Intraarticular injections might last a few days. I suppose they might be good for his pocket since I assume he'd get paid for adminstering them.
I am astounded at the downright ignorance of so many rheumatologists when it comes to PMR but I am compelled to say that judging by the reports of our Canadian members it seems to reach its peak (or nadir depending on how you look at it) in Canada! And in my book it is thoroughly unprofessional to tell a patient with a diagnosis for which the only treatment is one specific drug to scare patients to death by referring to it as evil, dangerous or the devil's tic-tacs. All of which have been mentioned in the last week.
International guidelines say "over 50" and one of the top UK PMR experts says she has several who are in their 40s. Here in Italy ALL staff are aware of PMR, I haven't had to explain it to anyone.
thanks. I’m already dealing with a neuromuscular disease and have two neurologists so I’ve got enough specialists as it is. The PMR was a brutal slap in the face. I’m making the best of it and doing my research. Thank you for the info about the injections. I probably miss heard the guy when he said joints. I’m not doing it anyway because I hate needles. It would be covered under our healthcare plan. I love the fact that in Italy doctors are aware of PMR.
In Germany neurologists sometimes manage PMR patients, would one of yours not help out? I don't know WHY neurologists - but they don't seem too bad at it!
For what it is worth; After seven months on Prednisone (from 15mg down to 7mg) I developed Macular Degeneration, which my ophthalmologist linked to my prednisone use. The docs gradually switched me to 200mg Hydroxychloroquine. That has seemed to work for me. After two years, I am down to 50mg HCQ a day. A the C-reactive protein constant at 3.
Believe me; If you have a fear of needles, you do not want to get Macular Degeneration. It means a shot directly into the pupil of your eye every eight weeks. 😳
One other thing; Five years prior to PMR, I had developed a myriad of muscle aches (over a three year period), which several doctors diagnosed as damaged rotator cuffs (both shoulders), carpal tunnel (wrists, hands, fingers), and hip pain and severe weakness. I attributed all of those to my taking Simvastatin (for high blood cholesterol), which I had been dutifully ingesting for the previous three years. So, on my own, I immediately quit taking statins and all the pains went away within the month. I didn’t need rotator cuff surgery after all. Didn’t need carpal tunnel surgery either! Five years later = PMR hitting me with a vengeance. Same muscle aches in the same locations. But all at once.
Yikes! I definitely don’t want macular degeneration 😞. I had been aware that some statins could cause muscle pain in some people - it is widely discussed among the neuro muscular communities I am part of. I will be making an opthamologist appointment!
Wow! Well done for quitting the Simvastatin! Amazing that it all got better within a month and you avoided 2 surgeries. What did your doctors say? Were they amazed?
Blossom20; Doctors were silent on the subject. Other than continually pushing me to take more, albeit a different brand. It is like they have to be in lockstep with all of hype.
I took Simvastatin for over three years, yet my cholesterol level never wavered from 240. It is still at that same level. I’m 74. I have a 47yo daughter who is a tri-athlete (with less than 3% body fat) and her cholesterol is 238. Both my parents had high cholesterol. Both lived into their mid-nineties.
It would be interesting to poll our members on Healthunlocked and find out how many are on statins. I would bet it would be a majority.
So interesting! I don't know how your figures relate to the UK measurements but I understand what you're saying. If the body needs it, it will make it.I have high cholesterol 7.5 and periferal vascular disease (since Pmr and Pred) I decided against the statins and tried with low carb diet. I've lost 7kilos. Then had another test and my cholesterol has gone up! I am so disappointed! I think it's all the stress and worry that puts it up.
The book I've got by Dr Cambell McBride says we need cholesterol, especially older women.
Not doing low carb high fat, just cutting out junk and doing Time restricted eating. But I feel like I'm in survival mode in a famine! Plus trying to solve my medical problems myself as I don't trust the medics - that equals stress and worry. This forum is so full of sensible well informed people. I'm very grateful to you all...
we have a shortage of GPs in the U.K. too. Appointments hard to get but at least we can request to see the same one. Not quite sure how two GPs can treat you with the same disease, they normally contradict each other. As for Rheumatologists ……? Good luck and hope things sorted for you 😊
Bursitis is a common cause of hip pain in PMR per my rheumatologist. A reluctant needle person myself, I was only getting 2-3 hours of sleep because my hips hurt on both sides. I took injection in my right hip (sleep on that side) and the effects lasted almost 4 months. Pain was gone and being able to get better sleep improved my mental health.There are many good resources for tapering prednisone in this group. It's a journey. Best wishes.
Most in the UK appeared at first glance to be in the London area - though I have to laugh at a clinic calling itself Great Northern - they are in LINCOLN!!!! There are options in the real NW though and Spire Hospitals appear to have it. But I imagine it will be common in the US if it has reached the UK
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