Is this normal
Posted , 7 users are following.
Strange to ask if anything about PMR is normal...I guess I mean normal for PMR.
Ive been coming down 1/2 mg a month by doing .25 every two weeks. Its been fine until I went from 9.5 till 9.25. Now I feel achy and flu like and aching muscles and joints. Not as bad as it was before pred...just a reminder its there. Ive waited a week and no let up so have gone back up to 9.5, disappointingly ....
Should I stick those aches out for longer? Are they normal and does it go?
Jen
1 like, 8 replies
ptolemy jennissw
Posted
tina-uk_cwall jennissw
Posted
then I suffered pretty much like you, in that all the aches and pains returned only not so bad. When I event upped my preds it took at least twice as long that originally to get all the pains and aches under control. Also when I flared and upped my meds I stayed on each .5 dose for 6 weeks so that each dose gad loads of time to do their work.
The only comment I will make about your every 2 week reduction plan is that it takes a good 2 weeks for each dose of preds to really do their work, so if after 2 weeks you then reduce some more albeit only by .25 you can not really say with confidence that the flare is a result of the current reduction or the last reduction. That's why I reduce by .5, stay on that dose for 6 weeks then I know for sure, if I had a flare, that it was the current dose. But this PMR recovery is very individual so whatever works for you.
i hope you feel well soon, all the best, christina
MrsO-UK_Surrey jennissw
Posted
EileenH jennissw
Posted
As the others have suggested, unless the 9.5mg works, I'd go back to 10mg and stick there for a few months and then try your little reductions again. But I'd also stick at the dose every 1/2mg for a month just to be sure.
jennissw EileenH
Posted
My rheumy is Dr. Quick who co wrote the bristol paper...mind you I only get to see her if lucky, every 4 months - 6 months.
I started on 15mg in Jan 2014. Had a bad time coming down to 12'5 so she let me go back up and start from 13. I gradually got to 10 but because i have been on a higher dose so long, she felt I need to try and get down some more.
I took an extra 1/2 yesterday to get back up to 9.5 and already feel marginally better. So I am guessing this is a dose I need to saty on for a bit.
On this dose my weight seems to be dropping a bit...helped by low carbs but that never worked above 10. And my face is looking a little slimmer...although I have been doing face excercises and massage so who knows. But before above 10 nothing made any difference
EileenH jennissw
Posted
snapperblue jennissw
Posted
If you try to tough it out and put up with the pain, you will have chronic inflammation and that is bad for you in many ways- immediately, it will take more and a longer course of prednisone to get it under control again.
In my earlier reductions, I'd have renewed mild aches for a few days, then things would improve. When I hit 15 mg, the mild pains did not go away and then worsened over several days. If the trend is in the wrong direction, I fear we have to retreat.
PMR is not a foe that can be battered into submission, alas, alack! It is more like a foe with whom we constantly negotiate. (And, no, we are not happy about this!)
jennissw
Posted
Im back up to 9.5 and feel okay again...when I say okay, I mean as well as any of us can hope to be with this disease. I will remain on it for a few weeks and try 1/8th increments this time. I take the coated kind and just use a low as poss dose of the white ones. I take 10.5 one day and 8.5 the next...I had cur that to 10 and 8.5. next time, when it feels right i will do 10.25 and 8.5.
I am aware how and why the pred works and that it is not a cure. But it would be good to get to a maintenance dose that sees off some of the side effects, especially would be nice to actually it into some of my summer clothes. I am losing weight so hopefully by the time its hot.....watch this space, ha ha
Jen