need help
Hello to All,
I was diagnosed in April 2021 with PMR. Started at 30 mg and am now at 1 mg prednisone daily.
Have not been feeling great this past month as I’ve been at this dose since end of August. Wondering if I should increase my dosage for a week or two, but don’t know exactly what dose to go to. Been doing a very slow taper these past 3 1/2 years and thought I was almost at the finish line.
Thanks for everyone’s postings and input. They are always so informative. Regards from NY
Hello there, Can you say exactly what you mean by feeling unwell? How have you been generally since you started this journey?
Been way more achy of late . My CRP was 9 the beginnings of October.
Achy in general or in PMR usual places?
CRP is tad high, so you could try the flare protocol as explained in link -and see what happens - but reducing back to 2mg rather than 1mg .
healthunlocked.com/pmrgcauk...
But if just yucky overall could be adrenals stuttering - or a combination of both, bit difficult to say in all honesty. See this link for info -
healthunlocked.com/pmrgcauk...
A bit of excess Pred for short while may help adrenals as well. So I’d be inclined to stay at 2mg for couple of months after the flare protocol and see if things settle… at such low doses 1mg can make a big difference…
You might think you are near the finish line, but many have thought that and discovered their PMR has a different opinion! 😳You really need to go very slowly when so low.
More like PMR achy. Thank you for your sound advice…..will keep you posted.
You are not actually aiming relentlessly to zero - you are looking for the lowest dose of pred that manages your inflammation and symptoms as well as the starting dose did. And to me too it sounds as if you have gone slightly too low for the inflammation, and the little bit left over each day is building up to a level you can feel again. What was your CRP previously? Was it lower?
Yes my CRP has been as low as 5 and as high as 24. Will go back to 2 mg daily as that’s where I last remember feeling good, and see how it goes.
If you have been as low as 5 than that is what you should be aiming for - and if it starts to rise and continues to so so, that is a sign you are too low. CRP will rise due to other more acute reasons but a rising trend should be taken as showing increasing PMR/GCA inflammation.
Have to agree with the others here and go with the flare protocol, up to 6.0mg for a week, could do two weeks if needed, to clear out any accumulation that's built up and then drop back to 2.0mg for a few weeks. Trying to go quickly or rush at this point is likely to mean even more Pred over a longer time.
Will be doubling my dose and see how it goes. Made it to 6 days at 1mg.
How did your final taper go? Did you get to zero? Hope all’s well
Not sure that doubling your dose will sort it,
It may do, but if no significant difference after a few days, then you need to treat as a flare -as already explained.
Still think you are pushing your luck by not using the flare protocol straightaway.
Taper was good, 0.5mg every five weeks, been on that taper schedule for a few years. Nearly six weeks off Pred now and fingers crossed.
Hello Shnookie,
Your experience exactly mirrors mine, timings and everything. I was also doing a slow taper and was fine until I got down to 1mg. Instead of waiting a couple of months I was less cautious and reduced after a month from 2mg to 1mg. After 3 weeks my aches and pains returned with a vengeance. I did increase the dose, but only to 3mg, though I should have increased more according to the tapering advice. I hated the thought of taking more Pred. because I have had problems with its long term effects. Though not so bad, the aches and pains are still with me and I’m going to have a blood test Friday to see how much inflammation is present. I’ll let you know the outcome. My ESR in September was 22.
Hope you feel better soon.
Hello, been doing 2.5 for 3 days now and have felt so much better. Will most likely stay here for a while. Seems you and I rushed the last part of the tapering and have paid the price of the rush to the finish line. Regards
Morning
Checking to see how you are? Are you still at 3 mg? I’ve been at 2.5 for past 13 days and feel good. Wondering what to do now….had gotten to 1 mg daily and then hit a roadblock
"Wondering what to do now" - just because you hit a roadblock at 1mg doesn't mean you can't slowly get to 1,5mg! Just be very careful trying for under 1mg. You aren't heading relentlessly to zero, you are looking for the lowest effective dose - which currently would appear to be IRO 1mg but not lower.
Thank you for your wisdom and expertise in the challenge of the taper! Love all the comments and suggestions offered on this site
Hello Shnookiedoodle,
Thank you for asking. You will see that the blood test the doctor suggested to check things, came to nought as after 2 appointments, my veins were too invisible to be able to take blood. I have asked the advice of Health Unlocked which was very helpful. Dorset Lady sent me the link to the tapering protocol. As my troubles started at 1mg of Pred I am taking another 5mg, a total of 6mg and hope all will be well. I will let you know how things go. Before diving down to 1mg after a month I had been on a very slow taper and was fine, I will wait a while in future even though, like everybody, I can’t wait to be free of Pred. The 22 ESR may mean that there is still some Polymyalgia in my system, that may be blocking my attempt to go down to 1mg without a flare.
I’m only too glad that you feel OK now. This should continue if you follow the advice given by the leaders of this forum and, unlike me 👀, take things slowly.
yes going from 2 mg to 1 mg after 5 weeks at 2 was not the way to go. Should stick with the 10% per 5 week reduction that I had been using successfully but then again who knows. Thank Goodness for prednisone
Regards
Now I know why I am feeling so Ill.
Sluggish adrenals or PMR
Pain an tenderness on top ofhead
20MG TO 15MG. IS THIS TOO BIG A DROP?!!!
Final stages of tapering
