I was diagnosed with PMR in August, 2022. I also have multiple sclerosis, autoimmune thyroid disease (Grave’s) and Sjogren’s Disease. With a few ups and downs when I had to temporarily increase the dose before dropping back to just above where I had been before the flare, my taper using DL’s slow 5 week taper had been pretty successful. I had been on 5mg for two and a half months when things started changing for the worse.
In early March my symptoms came roaring back in all the sites where my PMR originally started. Neck, shoulders, thighs, buttocks. I raised the dose to 10mg for a week and experienced some relief, so being fond of shooting myself in the foot, dropped back down to 5.5mg for 9 days, after which it became apparent that I was still flaring, only this time it was much worse. I upped my dose to 12.5 mg for 7 days, followed by 7 days at 10mg. I then dropped back down to 7.5 mg, where I have stayed for the last 17 days. Unfortunately, I am still in considerable pain in all the old sites and feel generally unwell.
I had a tooth extracted a month ago. While the procedure itself went amazingly well, in the aftermath it seems to have triggered a generalized autoimmune response in my body. I don’t have an infection, but the glands in my throat are enlarged, which sometimes happens when I am having an ms relapse and which I suspect may be prolonging my PMR flare. The rheumatologist is pushing methotrexate, but I tend to have really bad reaction to most medications so am reluctant to introduce yet another one with more potential side effects into the mix. Remarkably for me, prednisone, once I got the hang of it, has been a drug I tolerate pretty well.
I almost feel like I need to start the whole tapering process all over again, as I can’t seem to shake this flare. Maybe I have built up such a backlog of inflammation that small dose increases are not able to sop it all up? I seem to be stuck with this surplus, making it difficult for my body to ever get ahead of it.
If anyone has any suggestions or has experienced this kind of scenario, I would greatly appreciate hearing your suggestions.
Thanks!
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Donna5658
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I agree - that tooth episode seems to have caused a real relapse of the PMR that has sent it roaring back to full blast, but I think that you were already in trouble before that, you had got to a dose that was really borderline anyway and it didn't take much to mess it up entirely. It does happen with at least one version of PMR doing this - mine does, over the years I have had probably 3 or 4 full blown flares of PMR for various reasons. Statins are a culprit I can identify.
I also agree with you over MTX - with your complex history I think adding it woud be really confusing, first you need to get things under control with pred if possible and only then risk adding something that is by no means guaranteed to work and has potential unpleasant effects. It actually made me experience pred adverse effects I had never had before - or since - and I felt SO ill.
But you are in the USA - Kevzara is available and it is far more likely to work for PMR than MTX. Why is that not on the cards?
Kevzara is a biologic, effective, expensive and very new. Plaquenil seems to be a fixation of some doctors. It really doesn't have a reputation in PMR (there is one very strange study that claims it is a wonder drug) though there is one person on the forum who couldn't use pred and plaquenil works for them very well. I think with almost all the claimed DMARD steroid sparers, there will be the odd patient for whom they work very well but they never work for everyone as pred does. PMR comes in several versions that respond to different drugs in various ways - except pred that always works (it is part of the definition of the PMR we talk about here, a pred-responsive myalgia).
I just sent this update to DL and wanted to pass it on to you too, as you were both extremely helpful during this latest flare:
Just a quick update. I have taken 20mg for 8 days and almost all PMR symptoms, as well as swollen glands in throat and feeling “unwell” have gone. Glands back to normal size. The improvement happened over 2 to 3 days. It is such a relief to be feeling better. This flare made me feel systemically sick, much like I felt at diagnosis. I think my tooth extraction, as well as other stressors, triggered a cascade of autoimmune inflammation that I let go on too long before going up to the much higher 20mg dose.
I am thinking of dropping to 15mg tomorrow and doing that for the next 6 days. I wondered if I could then drop to 12.5mg for a week before heading back down to 10mg, where I will start your very slow taper all over again? I will reduce by .5mg increments per five weeks, rather than 1mg. Does this plan seem reasonable?
Thanks! I would have seen it anyway - I follow every thread so get notified of all replies. As DL says, first make sure the niggles are settled and then taper. All you can do is try. It sounds as if you have flares like mine and exactly how much pred you need now may vary compared with if the flare was due to overshooting the dose. No crystal balls here ...
Does the inflammation from an unchecked flare just keep building up and building up so that when you finally treat it with a much bigger increase in prednisone, the accumulated inflammation has to be “worked off” until the level reaches some sort of homeostasis?
Yes. Prof Mackie likes our analogy of a dripping tap being able to fill a bucket sooner or later. Any inflammation not countered by the pred settles in and waits for more to join it. Some will go pretty quickly with an increased dose of pred - but to clear out the accumulated stuff, that new dose must be greater than required for each day's new inflammation. If the tap is dripping a teacupful of water, and you are scooping out a coffee cup full, it will build up further. Use a beer mug and you'll be winning.
Thanks DorsetLady. I felt improved on 10, but still had some discomfort in the usual PMR sites.
I looked back and realize that in the first year of PMR I actually had another one of these blow-out flares and did a really big gun assault on it after just raising by 5mg above my dose didn’t do anything to alleviate the pain. For this first flare in December 2022 (after starting prednisone on 8/01/22) I ultimately went way up to 25mg for 7 days, 20mg for 5 days, 15mg for 5 days before heading back down to 12.5mg for 10 days, finally tapering back down to 10mg from 12.5 over the next week. Once completely back at 10mg, I resumed your slow taper at 1mg per 5weeks.
This process worked great from March of 2023 until November of 2023. I had no pain and was able to resume more normal activities. Once I arrived at 5mg, I began tapering by 1/2 mg every 5 weeks. I made it to 4.5mg after which some vague symptoms started showing up. I seem to be a slow learner and initially didn’t connect them to PMR, as they weren’t very dramatic. Between November 2023 and March 2024 I yo-yo’d a bit but mostly stayed on 5 or 5.5mg. Then on March 21st, the pain came back full force, as bad as the original pre-diagnosis, pre-prednisone time. I went up to 10mg, had some improvement and slowly tapered down to 7.5mg, where I have been for 18 days. I feel generally unwell, with swollen lymph nodes in my throat, as well as pain back in PMR sites. No fever, no respiratory symptoms. The dentist says it doesn’t sound like infection from the March 26th extraction, but it does seem like the extraction pushed me into a full blown autoimmune flare that was probably in the making before this more dramatic flare.
So that is my totally long-winded reply to your short, innocent question. Sorry for the length and repetition.. I am tempted to start back at a really high dose of 15 or 20 for a week or two to wipe out accumulated inflammation and then head back to 10 and start the slow taper all over again. I’m hoping you can show me the error of my thinking.
I think you may be correct in your thinking of starting over again…it does seem as if your PMR at 2 years in, is not at all happy. But think you do also need to sort out why you feel generally unwell with swollen lymph nodes - I appreciate they may be related to recent tooth issue, but think it needs checking.
So discuss with doctor[s] and consider going back to 20mg for a couple of weeks, then drop down to 15mg for another couple of weeks and see how you feel. Whether you can restart tapering from there… or try dropping to 10mg remains to be seen. But you certainly cannot continue as you are.
Thanks for your input! Just got my CRP result back and it is way up. And that was on 7.5 mg. So at least there’s an explanation for my feeling so sick. I started 20mg yesterday after the blood test.
Just a quick update. I have taken 20mg for 8 days and almost all PMR symptoms, as well as swollen glands in throat and feeling “unwell” have gone. Glands back to normal size. The improvement happened over 2 to 3 days. It is such a relief to be feeling better. This flare made me feel systemically sick, much like I felt at diagnosis. I think my tooth extraction, as well as other stressors, triggered a cascade of autoimmune inflammation that I let go on too long before going up to the much higher 20mg dose.
I am thinking of dropping to 15mg tomorrow and doing that for the next 6 days. I wondered if I could then drop to 12.5mg for a week before heading back down to 10mg, where I will start your very slow taper all over again? I will reduce by .5mg increments per five weeks, rather than 1mg. Does this plan seem reasonable?
I’m still unclear about the 14 days of an increased dose without suppressing one’s own cortisol production. Does this apply every time you go down another step? In other words, if I do 14 days on 20mgs, then 14 days on 15mg, and even a subsequent week on 12.5 before dropping back to 10, does my own cortisol production still remain unsuppressed?
At the doses you are talking about your adrenals are ‘resting’ and they don’t need to wake up until you get to around 7-8mg [does vary slightly from person to person] - see this link which explains more fully-
I can relate to your story of going up and down trying to guess if it is a flair or not even if I do not deal with several autoimmune conditions like you. I have been om MTX since august 2023, 20 mg the past 3 months. I tolerate it well, and it does have some effect on my general wellbeing, and fatigue. However - I cannot get below 12,5 mg prednisolone so only a couple of mgs less than with MTX. So, for me it is no wonder drug - I it has interactions with loads of other drugs. Therefore, I would agree with PMR pro - do not take that path. Hope you will feel better soon.
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