Flare up?
Posted , 5 users are following.
Hi all, I've been trying to follow the dr's orders to reduce my prednisone. In Aug. I went from 10 to 9 and after a few days got used to it. But in Sept when I tried 8, I started having pain flare-ups. I tried to keep at it to see if I got used to it, but everything got worse and worse. So in desperation I went back to 10. Now I've been a week on 10 and the flare up won't subside. I'm in so much pain in my legs, hips, arms, shoulders. Could it be something else? Isn't there anything that helps beside pred.?
0 likes, 11 replies
steve_1 DebbieHurts
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EileenH DebbieHurts
Posted
We've been saying for ages that pain that starts immediately you reduce the dose and then improves after a few days is probably steroid withdrawal whereas pain that starts after some days and then gets worse is more likely to be the inflammation flaring up. If say 12.5mg works you could probably take that for a week and then reduce quite quickly back to 10.
What sort of reduction do you use? Did you go from 10 to 9 overnight so to speak? Have you seen this reduction scheme that spreads the 1mg reduction over about 4 weeks and has worked for a lot of people?
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
it is in posts 4 and 5 of the thread.
However - if the underlying autoimmune cause of the PMR symptoms is still active you will reach a point where you have found the lowest dose that controls the inflammation it causes. If that is still active no reduction will let you relentlessly reduce to zero.
If trying a higher dose doesn't control the flare fairly quickly then your doctor needs a rethink - sometimes going to 15 or 20 will do the trick and then you can reduce again, in reasonably quick steps probably down to 12.5mg. But in some people it turns out not to have been plain pred-responsive PMR after all. For that sort of PMR there is nothing else that works, no. If on the other hand it turns out to be late onset rheumatoid arthritis there are others options.
jenny_sussex DebbieHurts
Posted
Just to write in support of what else is said, I also went on a silly reduction at consultant instruction - from 10 to 2mg in a very few weeks. I imploded at 2, went back to 5 but had to go back up to 10 to get any effect. I stayed there for 6 weeks and then reduced to 9, but after 7 days I had a major flare and was in bed for 2 days.
My pain levels are not as bad as many report but I don't feel as well since the ill advised reductions - very tired and lots of hot flushes.
I read most of the posts but was daft enough to not take the advice!
My rheumatology consultant didn't think I had pmr - I'll be interested to know what he thinks next time I see him (my appt is 9 months after the last time).
Please Debbie - take the advice of Eileen and the others with experience and don't make my mistakes.
All the best
Jen
EileenH jenny_sussex
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I've asked her to come back out of retirement...
DebbieHurts
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EileenH DebbieHurts
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Are you sure you haven't got something else going on? A cold, urinary tract or chest infection? I had got down to 3mg with no apparent problems over a few weeks but a really bad cold a few weeks ago seems to be having an effect and I have had to go back up a bit to prevent bicep cramp when typing. It's a bit difficult to tell at the moment - I also carried a few heavy bags that week too as we went away on holiday and spent 4 days at 2000m where I was walking up and down 3 flights of stairs a few times a day. That didn't bother me at all and I was really pleased - it's my upper arms and nothing else! Strange...
Oregonjohn-UK DebbieHurts
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DebbieHurts
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Say, do any you know hw to tturn off the ads
EileenH DebbieHurts
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The ads - get a good security package with a good adblocker. This computer has Adblockplus with Chrome. Ads? What ads!!!!!!
DebbieHurts EileenH
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EileenH DebbieHurts
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