Rhummi

I have had a diagnosis of PMR for 2 1/2 years, and went almost a year prior to diagnosis with symptoms that were very debilitating, and on and off prednisone during that year.My whole journey with this auto immune disease has been one of extreme frustration with the hugh impact on my quality of life. Just when I seem to be feeling better, have increased energy, I am told I have to reduce my prednisone. I started out on 30 mg and have gotten down to 15 mg. If I go below 15 even by a quarter to 14 3/4, using the dead slow and stop method, by the time I am at only 14 3/4, I am experiencing trouble getting up off of chairs again, raising my arms above my head, due to muscle discomfort, and the worst is extreme fatigue, like sleeping 14-18 hours per day. I have let myself stay like this for up to 2 weeks hoping my body will adjust, but it does not. Within 24 hours of increasing the dose again, I notice a small improvement, and within 48 to 72hrs, a significant improvement.At times now I wonder is it all in my head?? How can such a small adjustment in dose affect me so much.Anyway now I have decided that I am staying on the Prednisone at 15mg. per day for one year before I try again. However I am dreading my next appointment with my rheumatologist in Sept. and what he is going to say. I am just not able to mentally deal with laying on my couch or bed and sleeping the next year away, when if I take the 15, I have energy, and can still enjoy my life.

So Paula I certainly hear what you are saying and know what you are experiencing. I think we just need to be strong and let these Drs. know that we are the best ones to know how our bodies are reacting to the dosage that we are on. What worries me is if the Dr. is not understanding or receptive, then they will stop prescribing the Prednisone, but hopefully that is not a realistic worry.

Paula, As my Pred usage approached two years, my gp was going to require me to reduce. But I emailed the online info ElaineH supplied in her response and that changed his mind. Do try to get your dr to read Elaine's PMR info.

it does sound as if they are out of touch with recent finding they should up grade the findings of pmr because it seems as if they are out of date and it's patients that are suffering thank you Eileen

hi all I've not been on this page for ages my rheumatologist ask me cut down which I have bee doing the go slow method got down to 5 now I just become ill.got a urine in infection before that just recent I had chest infection still.got water retention in left ankle and both knees so cut a long story short I don't feel.I'm up.to reduce pred any more as I've just rang up for more 5mg predisolone same old story want me to reduce pred before he give me anymore wants to know when im going to reduce further so now iv got to wait for a call.back from a doc as last night bespoke to a nurse I'm so fed up.can't even get on my feet for chest infection not to reduce pred any more I just don't no wot to say out he than still.got pain if I could reduce I would thank you for the rant listing to me x