I started my second round of Pred treatment 5 weeks ago after a new investigation as my reumy thought I was to young for PMR.
The thing is that the first time I took Pred I started on 30 and was totally pain free. This time my neck gives me a hard time every morning up to noon with pain and stiffness.
I started on 20 and am now down on 15. I am frustrated to be in pain and wondering whether I should go to a higher dose and start all over as I know I can be pain free on Pred with the right dose.
It is often harder to get things under control when you have reduced and let in a flare so yes, I think you might find a higher dose to start helpful. But how long did you stay at 20mg having been told to start there this time? You probably need a good month before thinking about reducing. And a drop straight from 20 to 15 is too much at one go anyway. Were you OK at 20mg?
I was told to taper from 20 to 15 after two weeks as my bloods looked just fine. I have had the stiffness and pain in the neck all the time though. The first time I started medication with Pred, a year ago, I did more of the pace in tapering that you are suggesting. Strangely enough, that time it was my GP who controlled it. Now it is my reumy who wants a faster taper than you and many of us think is too fast.
It sounds like you were tapered completely off pred even though PMR usually lasts for several years and will require a low dose for all that time (maybe even just 2 or 3 mg if you taper down slowly enough). Tapering too fast this time isn't going to do you any good at all. Show your doctor one of the slow taper plans a lot of us use and say you want to try this. Over time your total pred dose will end up being lower because you'll be much less likely to flare and need to go back to a higher dose.
Here's one:
healthunlocked.com/pmrgcauk...
Yes, I was wheened of Pred totally feeling like crap from August to Septembre during new investigations like MRI. They didn’t find any other disorders so in Sprite of my young age (48) they had to admit the most likely diagnose is PMR.
It is probably good, in the long run, that you were properly investigated. The secret now is to manage PMR treatment in the way which will best work for you. First is acceptance that you are in it for the long haul, and finding the lowest possible dose which still controls the symptoms so you are comfortable and have good quality of life is the aim here. Trying to get you off pred as soon as possible is not the right way to go about things. Better way is to use a very slow taper, and please don't taper at all until your symptoms are as good as they can get, no less than 70% better. The next thing is to manage any side effects of pred so that you remain in good health. Stick with the forum and there will always be someone around to tell you how they managed certain issues. It's very helpful. And accepting that pred is your friend is also important. Doctors are oddly afraid of it, but low dose pred for PMR is relatively harmless and gives us a quality of life we wouldn't have without it.
I totally agree with you on all these points. I have accepted that I from now on is on medication and am determined to find a good way to handle my sloooow way down from any level that makes me free from pain as I know I can be. I just have to find a way to convince my reumy that I know more on this topic (me+Pred+tapering) than she does actually.... If I can’t get her listening to me I will do as PMRPro suggested and go back to my GP.
Yup - that's common enough. Would your GP take over your care? They are often more realistic.
The symptoms are ALWAYS king - the blood markers are very unreliable. Just because they look OK doesn't mean there isn't a load of stored up inflammation still needing to be cleared out. But above all, in tapering the steps down should never be more than 10% of the current dose - at present 1.5-2 mg at a time. 5mg was 25% and a big shock to the system.
Yes, I surely know about tapering being too fast and problems with that. This time I thought I would listen to the ”expert” and try what she adviced. Maybe I will go back to my GP actually. I felt kind of safe with him. From my first visit at the reumy there has been nothing but problem for me sadly. When they take my bloods at the reumy they don’t even measures my blood sugar, not once since March. Just CPR and SR. Strange....
Hi pirnilla...not sure how severe your pain is but my rheumatology advised me that some people only get 70 percent relief. Have you been totally pain free while taking Prednisone?
Unusual foresight of the rheumy! I’ve been one of the unlucky ones that only have 70 percent relief (and that for 6 1/2 years). When OA joined big time about 4 years ago I wasn’t a happy bunny!😏
Yes! Started on 30 a year ago and was totally pain free down to the level of 7,5, wheening at a fast pace so that wasn’t surprising at all.
Starting dose of pred?
Is anybody totally pain free with PMR 
GCA starting dose relapse?
Pain free and Gluten Free
On start dose of 15 mg Pred—- best way to do first taper?
