Saw rheumy today, a different one this time. Maybe some of what he told me will be useful to someone else, so I'll write a brief report before I forget it all! He read my history, asked questions and confirmed the diagnosis made by my own doctor and the 1st rheumy. Well, he said that his "clinical diagnosis" of which he is 90% certain is that I have PMR. Remember that I have normal ESRs, which is why my diagnosis has always been just slightly in doubt. He brought up the old bogey of my age and said I am a bit too young for PMR, but that my age certainly doesn't exclude the diagnosis. He went through all the blood tests and we talked a bit about the whole question of ESR and what's "normal". He says that what is normal for one person may not be for another, and that the rate increases with age anyhow. It's more a case of knowing what is your own individual "normal", and then seeing how far above that your rate goes when you are unwell.
We discussed the pred business and he said that he has only ever had 2 PMR patients who refused prednisone treatment, and that they both "caved in" in the end and took prednisone. I told him how I want to stop my pred and he said that he fully expects me to relapse and that he does not recommend it. I said I was OK on 3.5 although my upper arms ache a bit and he said I should stay where I am if I'm managing OK. I told him I will go ahead and go off the pred as I planned and see what happens. If I crash and burn, then I guess I will need to start again and he said I could start around 7mg and see how I get on, IF I insist on being "bloody minded" and going against doctor's advice! (he was very nice and kind, but I could tell he thought I was being unreasonable).
He explained that pred does not cure PMR of affect the progress of it at all, that taking pred will not make it go away any quicker, and that pred simply treats the symptoms and makes it possible to get on with life whereas untreated PMR is very disabling and miserable. He says that unfortunately there is simply nothing else that takes away the pain and other symptoms of PMR the way prednisone does. I did ask him about whether or not a regime of low dose prednisone is protective against the development of GCA and he gave me a long complicated answer that I didn't fully understand, but I take to mean no, it doesnt. I'm guessing that they don't really know. He certainly did not suggest that by stopping taking pred for my PMR I would be risking getting GCA. He knows I am stopping, as I told him and when I asked him the worst that could happen, he said my PMR would return and I would be back to square one, and possibly have to go back to 10mg a day and start the whole tapering process again. However, I AM going to be bloody minded, and continue to go off the pred and take my chances with relapse and anything else. It may be what I need to learn my lesson and do as I am told!
Oh, and he told me about a woman patient of his who has had PMR for 12 years! She is on ONE mg of prednisone and keeps trying to stop, but that when she stops the 1mg the PMR comes back! He says that some people are more prednisone sensitive than others, which is interesting because it may explain why some of you respond to higher doses and not to lower and why some of us need to reduce by 1/2mgs to avoid reactions. Unfortunately he was talking in terms of treatment for 18 months to 2 years before the thing is likely to start going away. Groan.
I with you chico on giving up the pred. I have been pred free for 8 weeks now and sugar free for 10 weeks. I feel good and have energy I didn't have when this started in Feb and diagnoised in April. I could not stand the sweaty all the time. My clothes were soaked. I would be ready to go out and have to change. Then the puffy face and weight gain. I have now lost the 20# I gained with pred. I do get stiff and hurt some, but I like it better then being on pred. I guess if I got so bad I could not get out of bed I would go back to the pred, but for now this is good for me. I wish you luck and hope all goes well for you. Geri - this might be a fall back drug to take when you quit the predisone. I was given prednisone for the first five months after diagnosis, then a stupid hard weanoff. I will never take it again, but I am also not being told what you are that its the only thing that helps PRA. Sorry for jumping into your thread, but I just wanted to let you know there might be an alterntative for you. Take care and good luck - CathyChico,
You need to do what works for you. I went down to 12.5 mg 2 weeks ago &
have had the return of stiff neck (not bad) some arm weakness, etc. Today I
only took 10mg. I will decide by how I feel tomorrow whether to stay at 10
or alternate or go back to 12.5. I have been back on sugar too.. so maybe
that is the problem. Not sure how to stop it before Monday given my
weekend plans.
And I have started with side effects (fat face *& increased appetite/weight
gain) on this dose that I didn;t have on higher dose!
who knows??Oh and did I say I continue to think about the struggle you are going tjrough
with this... hope whatever decision you make about pred, you are feeling
better soon!Cathy, you can jump into my threads anytime, that's what they are there for!
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