Diagnosed with PMR last April. 15 mg pred has kept pain at bay, tapered from 10 to 5.5 mg, dropping 1/2 mg every 3 weeks, no problems. When dropped to 5 mg, tremendous pain in glutes/buttocks & very low back/ coccyx. Now having to take 40mg+ and still having breakthru pain. Mornings especially bad, even when take 5 mg in middle of nite.
Blood work just came back, normal sed rate and CRP.
Should I keep increasing pred?
Thanks for any advice.
Hi there. With normal esr and crp I don't think it is appropriate to increase your steroids. 40mg is a hefty dose. You need to see your doctor to discuss what is causing your pain as your inflammatory markers associated with pmr are normal. Sorry you are having such a miserable time. Hope your doctor can sort something out.
Lizzie.
Beware - not everyone has raised inflammation markers. I never have, no matter how ill I might be feeling. I was diagnosed on symptoms and have been assessed on symptoms for a very long time. At best, they are a general guide and can mean anything, in some patients they react for a common cold alone.
Hi sorry you having a
Hi sorry you having a bad time. I have had similar experience with pain in abdomen/rib area. It usually lasts about two weeks and is like a muscle crams/spasm type pain, but very excruciating when I move. The first time I had it I rang GP and she suggested I in creased my steroids. This made no difference, and since being on this site I have learnt a great deal about PMR and flare ups. Long story short I paid privately to see a rhumy and he carried out many tests but could find nothing untoward and did not think it was the PMR pain, which I agreed with . I suppose what I am trying to say is that from your blood results it's not looking like PMR flare, but that said I am not a doctor. Many experts on hear will give you help and advise, as they did me. I am on 11 mg at present, I did get down to 7 mg at one point , under GP instructions, but now I know better and am decreasing slowly. I was diagnosed in May 2016 and starT 20 mg. I am female 64 yrs. good luck to you and hope things improve
Carole
HI. I got into difficulties last year with pain in glutes etc. I kept increasing the Pred. My bloods were good. I saw the rheumy. He said that the thing about Pred is that if you are having too much it can give you the very conditions that you are trying to control. Since I have dropped my Preds-- and I am now on 8mg -- I am much better. Pain in legs/glutes gone. It may not work for you, but you may be on too much I was on about 20 when I saw the rheumy and dropped by 2mg every fortnight until I got to 10, then a month on each 1mg drop. . Touch wood I am doing OK. The best I have been for about 3 years but I am also on Leflunomide. This has definitely helped although it is not a nice drug.It took a while to kick in. I can only take 10mg of Lef. More than that and I am not OK. Good luck. Keep us posted.
Hi, sorry to read your having such pain, have you consulted your GP regarding this & did he prescribe such an increase?
You really do need to see your GP either way as 40mg is a very high dose for PMR
It's very easy to blame PMR for every pain but this could be something entirely different, did you have this sort of pain at the start of PMR?
Please see your GP & let us know how you get on
Best Wishes
Mrs N
I would agree with the folks who have already answered. If 15 mg helped before, you would think that a similar dose would help with a flare. I would call the doctor quickly, you don't want to stay on 40mg for long you'll wind up having to taper down again, particularly if it's not helping. It could be myofacial pain or piriformis syndrome. You might try to see a physical therapist or even get a massage. I usually try heat when the muscles tighten up.
If the pain isn't responding to that high dose of Pred, then I think you need to see your doctor/consultant and quite possibly both. And soon.
It would appear that, at the time 5.5mg was holding the symptoms at bay quite nicely, but 5mg wasn't..........and it would seem that you actually missed your definitive dose (the one holding the pain) and the low back pain could very well be something entirely different or a PMR add-on such as sciatica, myofascial pain syndrome, or a problem with the piriformis muscle. Or possibly a hip problem.
5/5.5mg is a tiny dose and as there should be no side-effects perhaps you should have acted upon the pain more quickly.
Who told you to go up to 40mg+? Was it your doctor or were you trying to reduce the pain yourself? As the others say that is a huge increase.
I don't think this is necessarily PMR - I think you may have a back problem that developed coincidentally at the same time you reduce the pred. If 40mg is not managing the pain - I really would doubt this is PMR. Yes, you can have PMR with normal markers, and many patients taking any pred do not develop raised levels for some reason - but if 40mg isn't enough it does suggest something else. I agree with polkadotcom that it could be myofascial pain syndrome, or piriformis syndrome. Or even something else.
But some investigation is called for, not a higher dose of oral pred.
Pain and stiffness hits around midday after taking pred in the morning
PLS HELP- Start of therapy - response in how many days? 
Taking Pred during the night
scared and worried. 
