PMR - What do you wish you had known . . .

@cyndip How long has your total time been on pred? When were you diagnosed? How long were you on a higher dose? I was diagnosed early January and initially refused pred but capitulated March 20th. So all in all not too long. Tapered quickly and now at 2.5mg since june 5th. Frightened to go lower, pain is there but 1-2 totally manageable and really only when I work out. Pain goes away when I don't work out. Has anyone tapered off pred after bloodtests are back to normal?? My CRP from over 20 to 1.5 and sed from 125 to 17 My dr says to skip pred, 1 day this week, 2 next, 3 next. That would mean this last taper to zero will take 6 weeks. Dutch dr s are pretty conservative though. Has anyone's dr said that a dose below 5MG is basically below medicinal effects?? Wow, this PMR has been a really crazy ride, though seems I am luckier than many. It has really helped reading your stories, thank you for sharing.

@pmrnew

People say all kinds of things about lower doses of prednisone. Many people do elaborate tapering strategies just to reduce .5 mg in 2 months. Minuscule doses of prednisone seem to make a big difference to many people. I personally haven't ever cut a 1 mg tablet of prednisone in half. I might have tried it but there were too many crumbs. I never question the necessity of cutting 1 mg tablets in half if that works for people.

Anyway ... an endocrinologist I saw when I had adrenal insufficiency from long term prednisone use told me 3 mg was a very small dose of prednisone and there was no need to taper from that low of a dose. For context ... this was only true when my morning cortisol level was within the normal range. Until my cortisol level returned to within the normal range, I had to stay on 3 mg prednisone as a maintenance dose for my low cortisol level. I was too scared to go from 3 mg to zero in one step so I never discontinued prednisone that way. I did a "countdown taper" by doing 3 mg- 2 mg - 1 mg - ZERO ... all systems go for no prednisone for a day. I did a few test launches so I repeated this pattern a few times before I actually blasted off of prednisone.

It is true that 5 mg of prednisone is considered to be the "physiological dose" which is equivalent to the normal daily cortisol production of the adrenal glands. If your cortisol level is low then you may need that much prednisone.

The "medicinal effects" of 5 mg of prednisone might be too low to control PMR Many people have flares when they get to 7 mg of prednisone so my guess is that at least 7 mg might be the therapeutic dose to control PMR inflammation assuming people still have an adequate cortisol level.

My thought is that there are two conditions in play after we taper below 10 mg. It is either active inflammation caused by the disease we take prednisone for. It can also be a low cortisol level due to a side effect from prednisone. Another possibility is a combination of both of these problems.

if you have read down this far ....are you from the Netherlands? I have fond memories of Camp New Amsterdam in the early 1970s when I was stationed there. That Air Force Base doesn't exist anymore. Someone told me the base is a "green space" now.

@pmrnew I was diagnosed April 2024. Started with 20 mg prednisone which worked like magic and brought my CRP and SED numbers back to normal. I was treated by my primary care doc as he had experience with PMR and no rheumatologist in my area. I stayed at 20 a month and then started tapering in 5 mg increments. All went well until I got down to 5 mg and had a big flare. Went back up to 10 mg and came down using a much slower taper until I got down to 3 mg - another big flare. At this point my doc referred me to a rheumatologist in another city, thinking I might need a biologic. It took a long time (several months) to get an appointment. In the meantime I read on this site about the slow taper method for use with low doses that I shared here. I discussed it with my doc and we agreed that I would try it, monitoring and adjusting the dosage myself, and just keeping him updated periodically on my progress until I could see the rheumatologist. By the time my appointment came I was doing well and at 3.5 mg - rheumatologist said I should stick with this taper schedule as it’s obviously working for me. Had new bloodwork recently and my CRP and SED levels were normal. I asked the rheumatologist if I could just stop the prednisone since I’m at such a low dose, and he said no - that I should follow it out to the end. I’m at .5 mg now - will stay here a week and then start the steps down to zero if all goes well. I give my primary care doc a progress update every time I get down by another mg. I wish you the best of luck with your taper. I never realized that these last few mg would be so challenging and was very surprised when I flared again (with high blood numbers) at 3 mg!

@dadcue indeed everything you say make s so much more sense with the nuance. And with what you just said, maybe, just maybe the worst is behind me. And yes I am and just 2 weeks ago was in Zeist visiting family.

@momac59 Oh yes - I always ask lots of questions and even challenge when I think something is wrong for the 'whole of me', rather than just managing one disease pathway! I was on 20mg to start during my first 'firestorm/flare'. Reduced to 15mg within 10 days and almost all symptoms returned! So doc wanted me to go to 40mg! I refused and suggested 30mg, which he agreed. This has stopped the vast majority of the PMR symptoms, but has wreaked havoc in my life with the prednisone side-effects.
My doc is saying he will discuss 'steroid-sparing' drugs with me and possibly even a chemo drug to hopefully be able to taper off the prednisone quickly, since it is more life-disrupting than even the PMR flare! This is, of course, after me having to suffer the effects of the prednisone for 7 weeks... feeling very frustrated with the process and truly value all comments and help from this group!