Flareups, how to manage
Posted , 14 users are following.
Hello, hoping some of you can advise me on how to manage flareups. It has been about 2 1/2years now that I have had PMR. I was never on a really high dose of Prednisone, started at 20mg. Whenever I go below 15 even by 1/2mg my symptoms return, so I go back to 15 and in a few days to a week am feeling better.
What I am wondering is when you have a flareup and return to the higher dose how long should you wait before you try to reduce again? I am getting very frustrated at trying to reduce and would just like to stay at 15 as my energy leval is pretty decent and I feel well. However I keep getting the message from my rhematologist , family Dr. and even my pharmacist that I need to be decreasing. That is all right for them to say as they have no idea of how it feels to be unable to function properly.
Thanks
Carol Ann
2 likes, 38 replies
Pmrsurvivor1 carol_ann35477
Posted
hi
the fatigue is common, pain is exhausting and given your age it must hit you harder, im 48 and it wipes me out!
as regards flare ups, my doc explained that if you dont medicate the pred to a level above the pain it never goes away, and my experience is that it can take a couple of trys to get down again, come down slowly and if you hit the pain threshold go back up and wait.
not everyone will agree with me but i highly recommend avoiding wheat and caffeine, pretend you are coeliac if eating out( its easier than explaining pmr and nobody really understands).
its not forever it just feels like it
good luck and god bless
BOB
carol_ann35477 Pmrsurvivor1
Posted
Hi, thanks for the information. I have been doing a lot of reading in the last couple of weeks and had decided to try some intermittent fasting as well as the Keto diet. I started that last week and so far it is not as difficult as I had anticipated. I have gained a lot of weight due to the prednisone and inactivity during the last 2 years. I usually only have one cup of coffee per day so think that is probably okay.
Today I started to split my prednisone dose as Eileen suggested. 10 in the am and 5mg about 1pm. Hoping that will help.
you are right it is not forever, but it certainly seems like it in the moment.
I find my Dr. gives me no information about what to expect or how to manage this disease.I receive 100% more info and ideas to try here than from him. Sometimes I think all he is good for is prescribing the Prednisone.He leaves me alone with dosage and reduction, as he is aware I am an RN and feels I know what to do.
Thank you again and god bless as well.
Carol Ann
noosat carol_ann35477
Posted
Carol Ann, So glad you are doing better. To-day I stopped by a gym, got a membership application and plan to talk to my doctor about it on Thursday.
I'm still, I think 4th day, taking 5 in the morning and 2.5 about 7p.m I just hope I can hold at this level for another week or so then try to go lower. I agree with you that this forum is very helpful and informative.
EileenH noosat
Posted
SLOWLY!!!!! Start very small and build up slowly - make sure you don't overdo it at the start.
carol_ann35477 noosat
Posted
Happy to hear you are feeling well enough to think about joining a gym. i am not at that point yet. I have found a wonderful chair yoga program on a site a friend recommended to me, and am enjoying doing it.Have not been out of the house for two weeks and am feeling it. the weather is terrible here, so much snow and ice, that I am Leary at present about going out alone re falls.Take care.