another question, please bear with me. how often do you find it necessary to pop up your pred dose for a few days? once a year? every few months? more often? just curious, as ive struggled ever since my winter bout with bronchtiis that i posted a lot about. im currently at 5, started there in january. but it seems like as time goes on, im getting more intolerant of the least bit of increased activity. also i have severe allergies--right now trees and grass pollen are at the highest they can go. my stiffness and soreness is prevalent in the mornings, lessening by mid afternoon--it takes a long time evidently for me to absorb pred--uncoated. and im not one of the "lucky ones"--ive never ever been pain free with pmr. any thoughts? im hoping to see what other people do--yes, i know about "you need what you need", im trying to find out how often others find it necessary to increase for a few days without putting themselves in a yo-yo situation. by the way, for reference, i just imcreased for a few days after easter, the baking and all day gathering did me in. i also increased in february due to the bronchtisis. thank you.
I had two episodes of PMR, first lasted three years and the second for five.
First episode
Started on 30 mgs. and all ok until I got down to 10
back to 12.5 for 6 days then all ok until:
at 4.5 went back to 6 for 11 days all ok until:
at 4 went back to5 for 10 weeks ( GP’s direction ) all ok until:
1.75 went back to 3 for 2 weeks. Then progressed to zero and all well for 5 years.
Second episode
Started on 15 (Same GP said we’d be" less aggressive" this time. )
All ok until 8 when I reacted to Allendronic Acid, was given penicillin in case it was a chest infection. Even worse reaction so back to 20 on hospital instructions for 7 days
All ok until down to 4. Told to go back to 10 but couldn’t tolerate side effects so back to 4 and proceeded to zero with no more trouble.
This was six years ago and still all well!!
interesting–thanks. glad all is well now, just what i like to hear.
You write, “I’ve never ever been pain free with PMR.” How dreadful. Would your pain level reduce were you to increase pred for a week by, say, a couple of mg?
I am entirely pain-free unless I taper too quickly, forget a dose or, as I did earlier this month, muddle up some other white fragment with pred. When that happens, I increase pred a few mg and taper back to the original dose in a week or two. Then I am again pain-free.
I should add that I have not experienced a flare in my two years of PMR.
I was not pain free with the starting dose–always stiff and sore. im currently at 5–so even if i popped it all the way up to starting dose, id still be stiff and sore. its better as the day wears on–currently im on split dose, but doesnt matter–for me, neither way seems to be best . ive read many times that some of us just arent pain free. some days are worse than others–as i posted previously, ive increased a couple times this spring–spring is a misersble time for me with allergies–they seem to exacerbate my pmr–which got me to wondering how often others find it necessary to increase their pred for a few days.
Joy you are very lucky. Most people are never 100% pain free. They reckon if you can get at least 70% relief from the pred that is good news.
yes. i had consult with rheumy 2 months after starting pred. he said, “oh, youve got it bad then,” as i still had considerable soreness in my left arm and i was stiff and sore all over. it eases in the afternoon but never goes away.
I read on the forum of many who are pain-free. Good luck is a blessing.
For the first two months, I too had pain, but splitting the dose gave me 24 hours relief instead of just 9 hours, beginning late in the afternoon. You seem much the same.
I’m back on a single dose now but, at 10 mg, I was splitting 40:60, with most in the evening. What is your current split?
5 mg, 3-2 split, 3 morning, 2 evening. ive also tried 4-1. doesnt matter. i wasnt pain free at the starting dose–some of us just arent.
Have you tried, say, 2-4, – with most in the evening?
No–ive always needed that morning boost of pred to get me going. a 2-3 split is something ive read about on the forums but havent considered. thanks for the reminder.
You’d know inside a week whether 2mg : 4mg is any better, and nothing lost either way. (Someone, on the forum, even takes their entire dose in the evening.)