Hi everyone -- I am new here and have had PMR for about five months now. I can't help wondering if the last Covid vaccine I received may have possibly triggered it, since my symptoms started less than a month after that. (I had already had five previous Covid vaccines.) I was also going through a period of intense stress at the time (I live in Canada and we had a horrific wildfire season this year), so perhaps the combination of that along with the vaccine created the perfect storm for PMR to develop.
I am on 15 mg of Prednisone, and have tried twice to taper down with little success. I'm currently focusing on trying to eat a more anti-inflammatory diet, and am also taking some supplements suggested by my naturopath (curcumin and MSM). I will try tapering down the prednisone again in a bit, but I am terrified of developing GCA. I would frankly rather deal with the side effects of prednisone than risk going blind from GCA. So far, I haven't noticed any overt side effects from the prednisone, although I do have existing osteoporosis (I'm 62) so my doctor has put me on a bisphosphonate to help protect my bones. I also take high doses of calcium and vitamin D, eat lots of calcium-rich foods, and exercise regularly (daily walks and Tai chi classes twice a week). I also try to minimize stress through meditation and time spent in nature, and make sure I get enough sleep (if I sleep badly one night, I'll let myself lie in the following morning...but then I am semi-retired so I have that luxury. I feel I am doing all I can to help myself with this disease.
This is not a fun journey, and PMR hit me suddenly and out of the blue. In a matter of weeks, I went from being a fit, active, agile woman with no pain, to being almost totally debilitated until I was diagnosed in early August. Even with the prednisone, I still have some mild pain and stiffness so I find I'm more limited in what I can do now. It's certainly a huge learning curve, and a lesson in patience and acceptance. I believe it was Betty White who said: "Getting old isn't for sissies". She's right.
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Charlotteab
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PMR is life changing, but with time things will improve. You should not let your worry of GCA stopping you starting to reduce the steroids. The important thing is to know about its existence. .
I think you have been pretty exemplary in the management of your disease. Have a look at FAQs to learn about good practice in tapering. I am glad you found us so soon, this is a very knowledgeable forum with a real culture of helpfulness. It really helps when we hit bumps in the road. I agree with your view on the aetiology of the disease - many of us have stories of physical, mental, and emotional stress before being diagnosed.
I always thought Bette Davis’s said getting old is not for sissies. Whoever said it was right. I am hoping for a short renaissance when I finally go into remission.
GCA frightened me. I see my optician every 6 months because he has all the latest equipment and he keeps slides of the inside of my eyes. He would spot anything untoward. I would also report any visual issues as a matter of priority. It seems to keep the worry at bay. My GCA has not affected my temporal arteries.
Hello fellow Canadian. Sorry to hear of your PMR diagnosis, but glad you found this forum.
Was your initial dose of pred 15mg? Some folks start at 20mg (myself) and stay there for awhile to mop up the built up inflammation. You mentioned you tried tapering down twice with little success. Perhaps you tried to taper too much, too soon. What happens when you try to taper?
The early days after diagnosis is indeed a challenging time. You are mourning the loss of your old life and in doing so feeling a range of emotions (anger, sadness, shock, etc). Eventually you will hopefully come to a place of acceptance.
Making the necessary adjustments in lifestyle is key as is focusing on what you can control (diet, activity, rest, type of support), vs. things you cannot control (disease activity, if/when PMR burns out). I took curcumin in the beginning however it made little difference as the pred is so much stronger and better addresses the inflammation. You seem to already be making some great lifestyle adjustments to address your condition. I still sometimes worry about developing GCA and get any symptoms promptly addressed.
You are not alone and we are here if you have questions or just need to vent.
..and agree stress most probable cause, maybe finally triggered by Covid vaccine… but who knows.
As for GCA, just be watchful, but not paranoid… and there is life after [partial] sight loss - I know from experience … but then I wasn’t on steroids nor aware of it [likewise my doctor] at the time… 13 years ago.
Also have a look at the FAQs- info there on tapering, bone strength, sleeping etc….
If your starting dose of pred was 15mg, and you still are finding it difficult to taper down, then I can’t help wondering, like PMRCanada, whether the starting dose was sufficient to clear up all the inflammation that builds up prior to diagnosis?
Many of us, me included, started at 20mg or even 25mg, and stay at that level until the inflammation is better controlled, before starting to taper.
Maybe another visit to your doctor is needed if you continue to have issues tapering?
It may well have been the Covid jab that triggered it - there is evidence it can trigger a myalgia that is generally like a short-lived PMR. Of course some clever-dicks are rabbiting on about a Covid-vaccine triggered myalgia as if it were something special - other vaccines can be the final straw in triggering PMR as well but any of them require the right environment, including a genetic susceptibility and a history of immune system stresses such as illness, injury and STRESS, which can play a major role.
How did you try to taper? There are right ways and wrong ways - and when it fails it is usually because it was too aggressive. You aren't tapering off pred because it has cured the illness, the pred cures nothing, It is a management strategy and you start with a dose that is enough to clear out the accumulated inflammation and then you taper in a process called titration to find the lowest effective dose - the lowest dose that achieves the same level of symptom relief that starting dose did and that is always your guide. It must be in small steps, never more than 10% of the current dose, and not too often - you need to be sure it is still enough. PMR, even the vaccine induced variety, lasts at least a year and while some doctors will tell you PMR lasts 2 years and then is magically gone, in fact it can often last 4 or 5 years and sometimes even longer. PMR isn't the disease, it is the name given to the symptoms of an underlying autoimmune disorder which continues in the background, creating new inflammation in a daily basis, reducing in activity over time but the speed of that reduction varies a lot.
I got pmr after my last (5th) covid vaccine in June 23. I can track its start from stiff neck three days after vaccine to upper arms painful 5days after vaccine and then hip and arms virtually immovable 8days after vaccine. I had long covid from 2020, which was slowly improving but which is possibly also an auto immune condition so I think the research is that vaccines with adjuvant are not suitable for anyone with auto immune conditions. Mine was uk Pfizer vaccine. Now the only one available in uk.
Thanks everyone for your replies! It's very helpful to know there are others out there who are going through the same issues -- even though I wouldn't wish PMR on anyone!
My starting dose of Prednisone was 15 mg per day. It dramatically reduced my symptoms, but didn't get rid of them completely -- there is still some mild stiffness and soreness, though not enough to be that bothersome. So it's possible I should have been put on a slightly higher dose to begin with. As I have already been on prednisone for almost four months, though, and am getting worried about the development of side effects, I hesitate to increase my dose at this stage, but will discuss this with my doctor next time I see him.
When I tried tapering the first time, I was told by my doctor to go from 15 to 12.5 mg for a month, and then down to 10 mg for a month. But reducing my dosage even by 2.5 mg was too much. Within a week, the pain was getting worse again. I went back on 15 mg again for a while, then tried tapering down by 1.25 mg (by cutting 5 mg tablets into quarters). Again, that was too much...so I am back up to 15 mg again. Next time I renew the prescription, I am going to ask for some 1 mg tablets, if they have them, so I can try tapering by an even smaller amount. It's going to take forever that way, but it looks like I don't have a choice.
It's interesting how many people are making a connection between the onset of their PMR with either having had Covid, or having the Covid vaccine. When I asked my doctor about this, he didn't say one way or another that the vaccine may have started my PMR -- he did say that because it's such a relatively new virus/vaccine, it's going to take a few years for science to figure out if there really is a correlation between the two. But it wouldn't surprise me if this turns out to be the case.
"But reducing my dosage even by 2.5 mg was too much. Within a week, the pain was getting worse again"
A definite sign you really needed a bit more, you had no buffer to reduce the pred.
There are publications discussing the likelihood of there being "a covid vaccine induced myalgia" - hardly surprising it can be a trigger as other vaccines are known to be the final trigger for PMR>
Coming across this post a bit late! Hope you are doing well now. As the others suggest there is no reason why your PMR couldn't have been triggered by any vaccine, the timing does suggest your covid shot. Which vaccine(s) have you received? I've had a bunch of vaccines the past few years, including all the offered covid ones. Had an interesting experience with Shingrix which appears to have made it possible for me to taper more effectively. At the time I'd been having trouble tapering after dose increase to deal with a flare. Later I switched from Pfizer to Moderna, reacting quite strongly to the first one I had, but the next one, the usual six months later, made me feel ill in a completely different way, and before I made the connection or I wouldn't have had a second Moderna, some pre-existing heart symptoms became worrying enough that I mentioned them to my doctor and have now been diagnosed with a heart condition. Reverted to Pfizer last time, and had NO reaction at all. I sometimes wonder if the man even put the needle in my arm. So am booked, at some inconvenience, to receive that rare animal Novavax for spring dose.
So sorry to hear you've ended up with a heart condition from your vaccines!I haven't had a Covid vaccine now since last May, because I'm afraid to. Prior to that, I'd had six Covid vaccines since they first became available, and only reacted to them relatively mildly. But the last one, which I think was the first mRNA vaccine I'd had, seemed to give me PMR. I still have it, but am working at tapering off the prednisone -- although it's taken me eight months to get from 15 mg to 11 mg. I'm not sure how long I will have to deal with the PMR. I've read that vaccine-induced PMR doesn't last as long, but I'm skeptical.
Oh no, the heart condition was pre-existing! I only meant the vaccine seemed to make symptoms concerning enough to mention to my doctor - in fact I first mentioned them to my son, and he was the one who urged me to tell GP! They have actually settled a bit since then, but definitely there was something going on long before the vaccine.
As a matter of curiosity, which vaccines did you have beforehand? In Nova Scotia except for a limited age group allowed Astra-Zeneca there was nothing but mRNA on offer until Novavax. and they've made that practically impossible to obtain, although word is the immunity such as it is is equal to mRNA, but longer lasting, and with lower incidence of side effects.
As far as I can recall, I only ever had Pfizer and Moderna vaccines. My understanding was the last Pfizer one I had was a mRNA vaccine, but I could be wrong about that. I'd have to dig out the paperwork to double check!
Pfizer and Moderna covid vaccines are all mRNA. The last one would likely have been either bivalent or one which no longer included the original which targeted Wuhan strain, but directed at Omicron. The current ones are targeting XBB which is a substrain of Omicron allthough there are other subvariants circulating. One reason I'm going for Novavax this time. Different type of vaccine, although still aimed at XBB. I didn't react much to Pfizer, sore arm mainly and not even that for the last one I had. Not relying too much on vaccine to keep me safe. If in risky situations (like the dentist's office) I use iota-carrageenan nasal spray and CPC mouthwash. Now I have a personal air purifier so I feel more confident being in public spaces with others, although I still keep my respirator on!
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So am booked, at some inconvenience, to receive that rare animal Novavax for spring dose. 
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