I have been on 2mg for quite a while now. Earlier this year I didn't feel quite as well but resisted increasing my dose because I had been put under constant pressure to start taking Methotrexate by my rheumatologist and was arguing that the low dose was working well. In the late spring and early summer I had a spell when I felt really well and was thinking about reducing my dose. Then a few weeks ago I had Covid (mildly) and a bad UTI which took three weeks to clear. I didn't notice an increase in PMR symptoms when I had these but about a week later my symptoms became worse, particularly in my shoulders and upper arms.
On Saturday I'm going on holiday for two weeks and, although my symptoms aren't too bad, I don't want them to get any worse whilst I'm away (my last holiday was spoilt by my UTI). Should I increase my dose or wait and see if things improve? I'm already pre-diabetic and am struggling to get my BP down, even on two different medications, one at quite a high dose (interestingly, that medication can make Pred less effective - or it might be the other way round).
What are people's thoughts?
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Siena62
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I would try the flare protocol - add 5mg to the current dose for up to 2 weeks and then drop back to just above where the flare happened - 2,5mg would probably be fine since the flare is almost certainly due to the 2 infections. That will cover your holiday nicely
And frankly - what on earth is the rheumy thinking about trying to get you to take MTX when you have been doing well at 2mg? Prof Dasgupta told us he often kept patients on 2-3mg longer term to reduce the risk of flares. It would be one thing it MTX was guaranteed to make a difference - it isn't.
I can certainly emithize with you and your circumstances. ..been there as well a few other situations PMR and it's management brought me to.. short answer. I agree w PMRPro.Sooooooo...... my experience with MTX as a "pregnisone sparing" strategy did not work. Meaning, the addition of MTX did not facilitate my ability to taper my pregnisone dose . It was 5 yrs. ago , the negative side effects of pregnisone had taken root. I wasn't able to beak through 10 mg(double digit) or 5mg(adrenal) prenisone thresholds... (my words).
You get AAA+++ for getting to 2mg.
As for the your concurrent metabolic issues BP, borderline diabetes,UTI etc. My experiences have driven a shift toward being educated and true comprehension of how my personal/human physiology works and trends. Spirit, Mind, Body.
.Using a convenient simple calender journal, and some short hand plot activity,travel,social activites, sleep, meds, medical issue flares/occurrences/resolutions in that it removes my stress of trying to remember everyhing and who says what approach to take any all important why...
PMR as you are now aware can seems to be a bit prickly in many ways. I apologize in advance, for wordings, I only wish you success and good health.
Ps: I've been on 2mg of pregnisone for a few years with weekly self injection of an immune suppressant. I live in the States
Sorry to hear of your recent problems. I concur that you need to manage this flare and can only do that by increasing pred. I note from your profile that you've only been on pred since 2022. In my context that would seem like yesterday! Like you I tapered to 2 mg, but didn't really reach that level until the end of the second year - actually I got to 1.5 mg, but that was too low Spent most of the ensuing years at or about 2 or 2.5 mg, with the occasional attempt to taper lower. This included a bried flirtation with zero (back on pred within six weeks) and a major flare which was very hard to resolve. Finally, after about 8.5 years on pred in February of this year I finally tapered to zero and have, so far, been doing well.
This account is by way of reassuring you that you should feel pretty good about doing so well so quickly, and not to be shy about increasing the dose when you need to. We all of us want to be free of pred asap, but on the other hand it is a medication which can greatly enhance our quality of life if taken at the appropriate dose. I used to visualise the PMR/pred journey as a two-headed dragon. On the one hand there is the good effect of pred, on the other the potential downsides of medication interactions or unwanted side effects. You might enjoy an account I wrote several years ago. I should add that since that account was written I have certainly made my peace with pred and when I bid it farewell a few months ago I was saying goodbye to a (difficult) friend!
Thank you, everyone. So, if I go up to, say, 7mg I can drop straight down again without withdrawal or adrenal effects provided that I don’t stay on the higher dose for more than two weeks? I will still be on holiday in two weeks’ time and at that point won’t have a car and so will be being more active getting around. I wouldn’t want to have side effects of dropping my dose dramatically then. But I don’t want the higher dose (much higher than I’ve been on for a long time) to be ‘baked in’ either.
I suspect that 2mg has been slightly too low for me anyway - it was still allowing a low level of inflammation to circulate in the body - and the infections have taken me from slightly too low to too low, hence a build up of inflammation resulting in more symptoms.
Yes you can drop back down, but not as low as 2mg. Perhaps 2.5mg or 3mg for 2 reasons - a. If 2mg was not quite enough, and b. If you are going to be more active.
Also don’t try and restart taper until a few weeks after return from holiday and really sure all is okay.
So, anything up to 14 days is ok (can do a big drop to a little bit higher than 2mg) but no longer than that because that will require a slow taper to deal with withdrawal and adrenal problems?
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