I started on 80. Went in the hospital for three days had arteries removed from both sides of my head . Came out of hospital on 60. After a month was dropped down to 20. After a month of 20. I dropped my self down to 15. Have been on that for 2 months. Tried to drop down to 10 but was not able to walk. My family doctor told me I am on too strong of a dose? What do I do if not able to walk ? Does anyone have a good doctor that can handle PMR in Port Charlotte fl. And not Dr Tarr.He was my doctor but wanted me to pay full amount first of the year Medicare . I did not have that amount so they would not see me.
" My family doctor told me I am on too strong of a dose?" "What do I do if not able to walk ?"
Well he's a fat lot of use. Not his pain so doesn't see it as his problem. And he needs to get himself informed.
This paper is aimed at doctors like him to improve their management of their patients with PMR:
http://www.rcpe.ac.uk/sites/default/files/quick.pdf
Their reduction programme is far more sensible than his ideas. You have tried to reduce in too big a step - no reduction should be more than 10% of the current dose according to top US experts in tapering in PMR.
If you are reasonably pain-free at 15mg you can start to reduce MORE SLOWLY. I think 1mg at a time is quite enough. I doubt your doctor will agree. You are not reducing relentlessly to zero, you are reducing in small steps looking for the lowest dose that gives the same result as that 20mg did.
The pain and stiffness that came back after trying to reduce 33% at one go was most likely to be steroid withdrawal rheumatism - and by reducing just 1mg at a time you will avoid so much discomfort. He will say it is too slow - it isn't slow when it works and you don't have to go back to a higher dose.
And for your family doctor's eddification - offer him these articles to read and he can look for the original paper:
https://www.medpagetoday.com/rheumatology/generalrheumatology/66912
There are few long term adverse effects with PMR-level doses that wouldn't have been seen in a similar group of patients not on pred. So he should stop panicking.
You were started at such a high dose because they suspected you might have GCA - obviously they decided you didn't and you were immediately reduced to a normal PMR starting dose of 20mg. Now you have to reduce - just like everyone else, but it must be in small steps. You are on pred for PMR not a chest infection. It is different.
Since they suspected GCA originally it is possible you are somewhere in the middle - and your doctor might find this article from a top PMR/GCa expert interesting
https://academic.oup.com/rheumatology/article/56/4/506/2631560
I doubt there is anyone here who can help with a doctor - this is a UK-based forum with only a few US members. I know a lot of people in Florida compalin about the rheumatologists there. Given the number of elderly patients there you would think the supply might be better!
Hi. I live in Hollywood Florida. I go to dr alex lam. I am trying actemra one shot a week and I am down to 2 mil predsone I do believe. It is working I am 55 years old work and work out at least 4 days a week. With the actemra I went from rather quickly from 30 to 2 mil grams. Give it a try. Mj