I've been flaring since September '22 when I got the last covid booster and finally decided that I needed to increase my prednisone to address the increasing aches and pains that seem to be spreading as time wore on.
When I got the booster in September '22, I was tapering 1 mg a month with alternating days of 7 mg and 8 mg but after the 8th day of the booster I painfully flared. I immediately went back up to my initial dosage of 10 mg when I was first diagnosed with PMR in March '22 after symptoms appeared in Jan '22. I then saw my rheumatologist this past January '23 where she wanted me to taper.
Since January I had tapered to 9 mg but just the mere thought of decreasing to 8.5 mg was just so unsettling due to these ever increasing aches and pains I hesitated to do so.
So this past Friday I did the unthinkable and increased my daily dosage of prednisone to 15 mg a day, (5 mg above above what my rheumatologist initially prescribed). I just couldn't take it any longer.
It's taken a couple of days to feel better but I am feeling much better than I was at 9 mg. My rheumatologist doesn't know I increased my dosage by that much but I do have an appointment to see her again in 4 weeks time and will let her know.
In the meantime, I decided to stay at 15 mg for about 10 days and then thought to taper to 12.5 mg but I am not sure if I should stay at 15 mg a bit longer to clear out this long standing inflammation and if the next taper should be 12.5 mg or maybe a lesser mg dosage taper.
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perceptual63
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This link contains usual advice for dealing with a flare- so you can stay at 15mg for up to 14 days without an issue to dropping back down. In view of how long it’s been brewing, I would be inclined to drop down in 2 stages.
Firstly to 12mg, stay for a week to 10 day , then to 9mg. Means you will still be on 9mg when you see Rheumy, but it is what it is…
Thank you, DorsetLady, for your suggestion for a 2 stage taper. 💖
I think by me being at 9 mg when I see her I'm hoping she would be less miffed at me than if I were to see her at a 15 mg dosage, which she has never prescribed.
The one question remains the activity of the underlying disease which was obviously ramped up by the effect of the vaccine on the immune system. Don;t be surprised if you struggle to get back to 9mg.
This is what I'm afraid of. I waited a whole year between boosters because I felt by having so many covid vaccines/boosters I believe that's what started PMR in the first place. And even waiting a year between boosters I still flared. But I also got the flu shot the same day as the last covid booster so I'm sure that didn't help matters either.
I'm not sure if I should continue to get covid vaccines going forward if they are just going to cause me to flare again and again. It can't be good to the body.
Ah - my GP here in Italy was adamant, not both on the same day! I had nerly 3 weeks between I think, The Covid vaccine didn't affect the PMR this time - the second Moderna had but the rest had been fine. But I have atrial fibrillation and it REALLY did a number on that! I have put it down to being the bivalent one,
Yes, the bivalent gave me the quickest reaction in just 8 days.
In the US we had 5 covid vaccines to get. The initial two, then two boosters, then lastly, the bivalent booster. I got the initial two vaccines then the first booster and then I flared a couple months later. I skipped the second booster (4th vaccine) which allowed me a year off then got the bivalent booster and flared 8 days later.
I have read that PMR can be a side effect of the covid vaccines but I'm not sure if PMR is just a side effect of covid vaccines or of all vaccines since all vaccines do affect the immune system in general.
Now on the other hand, my housemate who's had all 5 of the covid vaccines and the flu vaccine the same day as the bivalent vaccine, is diabetic, and on a whole plethora of medications, experienced overall just a sore arm and a day of fatigue from one of the boosters.
It isn't all vaccines, some vaccines are more likely to cause problems than others - the flu and Zostavax shingles vaccines are known and obviously now the Covid vaccines seem to as well. But PMR is due to an accumulation of a series of insults to the immune system including illness, stress, injury, chemical and environmental effects amongst others. If it weren't the vaccine it could be the disease it was to protect you from, Some medications get the blame. But there must be a genetic propensity existing too for it to develop. No two persons have the same acquired history.
Will I have another? Don't know - will have to discuss it with the cardiologist.
If you have any pain more than normal DON’T REDUCE. Just stay where you are. If you get a flare go up by 5mg to hit the PMR on the head. If OK after a week or so you can reduce back down say 4mg and then 1mg. If you stay on the higher dose over a couple of weeks you will need to taper.
My aches and pains are so much better on 15 mg as opposed to the 9 mg that I was struggling on. I'm shooting for 10 days on 15 mg then will follow DorsetLady's suggestion to taper to 12 mg for a week to 10 days then drop again to 9 mg and will be on that dosage by the time my next appointment is with my rheumatologist.
Well, so far that's the plan unless I flare again while tapering. 🙏
I know everybody is different but......10mgs seems a very low starting dose of pred. Maybe not enough to give the PMR an initial good kicking.
A general observation after a few years with PMR and regularly on this site - the people who seem to get in most bother with tapering/flares etc are those who are under close control by their doctors. Doing what seems right for you might be a better strategy.
I think your rheumy has to accept that the vaccine sent you back to the start so I hope they also accept the 10mg was a very lucky strike as a starting dose.
How are the symptoms on 15mg? If you are pretty much pain-free it is probably worth trying the drop but have a very low threshold for going back.
My aches and pains are so much better and even my eyeballs no longer hurt when I press them. That started about 3 weeks ago and thought it was from the prednisone but then I refuted that because I believe that would have happened months ago, but it didn't. So then I surmised that my eye pain was due to the long standing inflammation/aches/pains I've been enduring for the past 6 months and that's when I decided to throw in the towel and increase my prednisone to the recommended dosage of 15 mg.
I wish I could stay at this dosage like forever but I know that is not being realistic, but I am so relishing in this newfound (albeit small) window of 10 days to finally being pain-free. 😃
One thing you didn’t come outright and say is whether you were ever pain free at 9 mg/d. If not I surely wouldn’t attempt to drop to 8.5. It sounds like you aren’t using DL’s simple taper. That’s the only one I followed after attempting the N.I.C.E. approach as the other DSNS didn’t impress me and seemed too difficult to memorize. I haven’t done DL’s since last September and I can still recite it.
I’m also not fond of Yo-Yo’ing. I suggest staying at 15 mg/d until you have gone at least 7 days with zero PMR pain. Since it appears you’ve experienced difficulty dropping, I’d make my steps 1 mg per 5 weeks (i.e., DL’s basic time span). As long as you feel no PMR pain, continue down. Between 15 mg/d & 10 mg/d if feel ok starting week 4 of DL’s taper skip the week 4 and do week 5 which is 7 days at the new dose. Once start 10 mg/d go back and follow the schedule to the letter. At this point forward do literally 10% reductions and at 6 mg/d use 0.5 mg steps (cut a non-enteric coated 1 mg in half with a pill cutter). Once down to 3 mg/d I’d suggest cutting the 1 mg into quarters and use 0.25 mg steps. This will reduce the magnitude of any flares making recovery quick and seriously reduce the risk of AI on the decrease.
It’s imperative that you address a flare at the very first hint of pain. It is, what it is. You cannot control the disease, it will do what it will do. Best you can do is match the intensity of the disease with the correct amount of Pred to negate the inflammation and thus the pain.
Once I finally incorporated this into my mind, instead of just saying the words, then everything became easier. I accepted what was and responded accordingly. This disease typically runs its course between 1.5 - 6 years, some have had it much longer than that. So trying to guess or hurry things up is a waste of time, and unnecessary pain.
As to your Rheumy…arm yourself with the research, print it out, especially that which states average as 5 years. This site has a bunch. It’s one way to shut your Rheumy up. I had some rather intense arguments with mine, even had me discussing with my GP whether if he ever threatened not to refill my Rx would she be willing work with me to manage. She said, it wouldn’t come to that. She was right. My Rheumy backed off at each quarterly visit he asked how I was feeling and what refills I needed and prescribed them. At this stage I think I knew the disease better than him. Plus I had and was living it. He hadn’t.
Thanks for the reply, but I did state in my original post that I was still experiencing aches and pains at 9 mg and was reluctant to taper further.
So this is where I'm at in my journey with PMR.
When my rheumatologist first put me on steroids last year it was only a split dose of 10 mg a day. The main reason for not going any higher was due to my having viral hepatitis B in the past and there was/is a very real fear of reactivating it. Even my gastroenterologist stated that if I increase my steroids then I have to let her know, but at 10 mg I should be okay because it's a low dose.
Initially, I did well on 10 mg and was pain-free. So much so, I began to taper 1 mg a month as suggested by my rheumatologist. I had gotten down to alternating days of 7 and 8 mg when I decided last September to get both the bivalent covid and the flu vaccines together. Then 8 days later I flared terribly so I went back up to my original dose of 10 mg but my pain never really completely resolved since then. I remained on 10 mg up until January of this year.
I have been seeing my rheumatologist faithfully every 3 months (last appointment was this past January) and at that appointment she wanted me to taper again. I did and went down to 9 mg but found that my aches and pains were getting worse where it started to go into my chest and down my neck and back and slightly into one of my biceps. That's when I understood that I just needed to go up to 15 mg (as to what is usually prescribed, or more) when someone is afflicted with PMR. I made that decision to go up to 15 mg last Friday without my rheumatologist knowing. I see my rheumatologist again next month and will let her know. Going forward, I will stay at 15 mg for about 10 days then if I am still pain-free I will reduce to 12 mg and again to 9 mg, as long as I'm still pain-free, as suggested by DorsetLady..
Now with all that being said I just hope that with this increase in prednisone it doesn't reactivate my hepatitis B 'cause if it does I'll have a lot more serious health problems than just PMR, which unfortunately could be life threatening.
So we are trying to balance controlling my PMR symptoms without reactivating my hepatitis B which gets triggered from a weakened immune system that can be caused from taking prednisone.
I'm between a rock and a hard place but the good news is I'm alive and still kicking.
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