For members with PMR - how long have you had PMR - PMRGCAuk
I feel I could have put this baby back to sleep much sooner if I had not listened to my GP twice when he gave me bad advice on how to reduce pred. The advice I have received from this web site has put me on track, but I am so sad that the advice came too late and, I feel, I am now into an extra year of steroids.
Pats.
I feel the same and I am battling now with trying to see a specialist 9 months ago she said I had PMR only gave me 15mg steroids and already she has me on 3mg but I have had to up the dose to 5mg it has all been done too fast especially as I went back to her on 4mg complaining how ill I felt and she said I had to go down to 3mg where in the world is the sense in this she also said my blood test had risen to 14 from 3 but it was still in the acceptable limits . They obviously don't understand but she seemed very clued up at the start.
I am still suffering badly, I met a friend last evening who said she has been diagnosed and been put on 20mg to start I don't know why all GP's seem to get it different.
Hi wainstalls,
I have never had a positive result in my blood tests for PMR and yet 2 Specialists have said I am classic for PMR. It amazes me that some doctors still do not follow the BSR guidelines for the treatment of PMR and GCA.
You have, in my opinion, reduced your doses of pred far too fast and, therefore, your inflammation has gone up.
You should never reduce the dose of pred if, after a week, you do not feel comfortable with the new dose. If you still have the symptoms of PMR then you should go back to the dose that worked and stay there a little longer before you reduce. Then reduce more slowly. Above all, listen to your body. Try to keep a record of how you feel on each dose and, by the way, below 20mg it is often advisable to reduce by only 10%. I could only reduce by 1mg at a time, and now I'm below 10mg the reductions are half a mg at a time.
Good luck, Pats.
I am sick of doctors who treat lab results instead of their patients symptoms. I have had pmr for 4 yrs. I stopped going to a rheumatologist and just let my GP take care of me. He allows me to taper my prednisone according to how I feel rather than how my lab work looks. I had 2 bouts of shingles this past winter. However this past summer I got down to 7 mg for the first time in 4 yrs. Best summer I ever had, then got the shingles again. Had to got up to 20mg, then to 15, now I am on 14, will go slowly down month by month. Hope my immune system can take the winter without me getting a viral infection of any kind. I do love this support here, we are all in the same boat, it is helpful to know that others are doing the same thing.
