Posted , 9 users are following.
hi- i am at 6mg and withdrawing. my gp has just changed advice and said i need to lower half a mg every 4 weeks when i get to 5. he is a great GP who i trust but he is prone to being overly cautious. i would love to know if any other people on this forum have also been told to lower by half after 5mg? thanks
1 like, 10 replies
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ptolemy heg
Posted
I did not try to lower by more than half a mg below 10mg even. I did not succeed in doing it every four weeks though as I got terrible deathly fatigue due to the adrenal glands not wanting yo wake up as they should.
nick67069 heg
Posted
Your GP is correct, recommendation is not to lower dose more then 10%, which at the level that you are is about 0.5mg. I hope that you are using DSNS (slow) taper method, which minimizes steroids withdrawal symptoms. In any case, be careful and keep in mind that you are not reducing relentlessly to zero, you are looking for proper maintenance dose that keeps PMR symptoms under control.
Anhaga heg
Posted
This is very good advice. I'd go further and say only taper when you have no symptoms. You are getting to the point where you need to find the lowest dose which still controls your symptoms. You are not tapering to zero. At some point you will be able to taper off, but the likelihood of a long slow uninterrupted taper to zero without a pause of some length is unlikely, although possible and you may be a lucky one. The median duration of PMR is in the area of six years. Most of those six years will be spent at a very low dose unlikely to cause adverse side effects, and that's what you're looking for. The slower you taper from now on the better your chances of finding it.
My "lowest best dose" has been around 2 mg for several years, and every once in a while I attempt another taper. Have been lower, but what with the pandemic and other physical problems I'm staying put at 2 until things settle again.
peggy_56092 heg
Edited
I started reduction of 1/2 mg when lowering below 10 mgs. This year I got to 3 mgs only to experience pain so upped it to 4 mgs where I am staying for as long as necessary. I am in my 5th year of PMR/pred dosage, beginning with l5 mgs.
1951grumpa heg
Edited
My Rheumatologist scolded me once when i had to go back to 5mg when i had increasing inflammation. I was going 1mg/month because I felt good and was impatient. . She said , I told you only .5 mg per month.
EileenH heg
Posted
Top experts say steps in tapering should never be more than 10% of the current dose - at 5mg that is 1/2mg. The lower you get, the slower the taper should be because not only are you getting closer to the dose you are looking for - the lowest effective dose - but you are also looking or your adrenal function to return and that takes time. The slower the better.
rosemary83494 heg
Posted
Just had a telephone appointment from my Rheumy Doctor this morning, I saw her last in January 2020. Likewise she wants me to come down 1mg a month to get off Prednisolone-I am currently on 5mg. I said I have been on 5mg for about 3 months, and it seems to be about right for me. I did have a bit of a twinge in my right shoulder at first, but that has gone now. I am reluctant to go down any more as I have had many flare-ups during the year when I tried to come down. However she wants me off them, but said of course it is my decision, and what did I think. I said I would stay as I am for now, and then come down slowly half a mg at a time. I also took myself off all calcium tablets as they were giving me a problem, and have increased whole milk, yoghurt and cheese intake, but she would like me to go back on A Acid ones again, which I am not keen to do either. She also said that as I was not taking them I should be having Vitamin D tablets. I do take Turmeric and Honey tablets, which I find quite good. Seems we were a bit at odds as to what I should be doing, but I do feel I know my own body best, and everyone is different. I will see what is in her letter she is sending to my Doctor, copy to me when it comes!
EileenH rosemary83494
Posted
WHY does she want you off pred when you have just achieved the sweet spot for you and it is a really low and safe dose? There seem to be a lot of doctors trying to force patients off pred at present. Though at least she says it is your decision ...
Anhaga rosemary83494
Posted
You might consider taking Vitamin K2 (not K1) supplements. It's the vitamin which directs calcium to the bones and also helps with some of the problems people have from taking too much calcium in supplements. Vitamin D enables us to absorb calcium, but it doesn't actually send it to the bones. Vitamin K2 and magnesium are important for that!
Jerry-123 heg
Posted
I am interested in your and others' experiences in PMR due to a relative who is in a situation similar to yours. Thank you. (I'm reading up on it to educate myself.) I wish you the best in your withdrawal program and recovery! and am glad to others are responding to you better than I could. Blessings.