To make a long story short, I was diagnosed with PMR and placed on 20 mg Prednisone in September 2016, and after blood tests showed no trace of inflammation, the dose was reduced to 15 mg, to 12.5 mg and 10 mg every 6-8 weeks. The exhaustion was gone but I still have slight pain now and again. I can't say I'm perfect but I'm getting stronger every day to the point that I feel 98% back to normal. I just got back from the rheumatologist, blood tests are still normal and he wants to drop the dose from 10 mg to 7.5 mg for the next 6-8 weeks. I told him I was concerned but he said I've been doing so well with the reductions that he wants to try this drastic reduction and later on, he wants to drop to 5 mg! He also said that my PMR doesn't seem as severe as other cases he's seen but he also said if it doesn't work and I flare, we can increase the dose. I'm really worried, I just don't want the pain to come back. He is one of the best doctors in our state and so far I've been doing very well under his care but I just don't know what to do now. I've been taking the dose in the morning and at night so if I do the drastic reduction I'll try 5 mg in the morning and 2.5 mg at night. I think I know what you ladies will tell me but I'd like to hear it again. I don't post much but I read everything you write and you have been very informative. Thank you for all your help!
I'd like your thoughts on this one...: To make a... - PMRGCAuk
I'd like your thoughts on this one...
Tell him you would like to try dropping by 1 mg from now on. The guidelines say you should not drop by more than 10% of the dose, and at 10 mg that is 1 mg. You have tapered from 20 mg to 10 mg in approximately 6 or 7 months. That is brilliant and he should be pleased you accomplished this. But now that you are at 10 mg it simply isn't a good idea to keep dropping in big steps. I find it disturbing that he would be prepared to risk your progress just to follow what is almost certainly an unrealistic tapering schedule. Do you know if he is aware of some of the papers which have been published recommending a very slow taper?
This is a recent article:
emedicine.medscape.com/arti...
and the definitive Bristol paper:
rcpe.ac.uk/sites/default/fi...
Hello heronNS. The 2 articles made interesting reading.However, a part of 1 sentence says'dose depends on patient's weight.....'
Have never heard that berfore, and why would it?
It's the first place I've seen anything so definite as that about relationship of dose and weight - it is rarely applied. The only relationship is that for a fixed dose, small people respond quicker than large people! An Italian study found that. But otherwise - they start with a dose that should be too much, it's immaterial.
What interested me more was the statement "The low-dose corticosteroids used in PMR are almost certainly ineffective in the prevention of vasculitis progression." - which is logical but there are far too many doctors who tell patients on low doses their symptoms CAN'T be GCA. One day, they'll tell the wrong person that and the patient will wake up blind.
Relief to hear it's rarely applied. Some of us have enough to contend with, daily, without having weight thrown into the mix. The Cardios also want weight reduction in patients. I have lost 3 and a half stone,
in 2 years, without dieting...was circumstances and illness.
Hello HeronNS very interesting articles, thank you so much for sharing. I agree with you, I don't understand the unrealistic tapering schedule either, considering he's regarded as one of the best doctors in our area. I will drop 1 mg every 3 weeks or so and see what happens. Thank you!
Thanks for posting Heron NS, I read Treatment of PMR A Systematic Review once before and then couldn't find the link.
Always ask a librarian... 
HeronNS: I find this paper to be comprehensive, thoroughly researched and honest in its conclusions. I believe when the 2015 Recommendations for the Management of PMR was written, both Dasgupta and the BSR/BHPR compromised their previous positions when they recommended tapering at 1 mg per month. The active links to the references used for this paper is also an excellent resource. Thanks again.
Dasgupta was only one of a LOT of members of the committee! The process they use to come to agreement is fairly standard I gather.
What was their previous position?
PMRpro, On the subject of tapering, Dasgupta wrote a paper which described taking a patient down from 10 mg to 7 mg at the rate of 1 mg per day per month and then stopping for 3 months. He then came down from 7 mg to 5 mg by 1 mg decrements, and stopped once again for 3 months. From 5 mg to zero, he dropped at a rate of .5 mg per month. From my limited experience, I think this is brilliant
In 2009 and again in 2010, the BSR/BHPR (with Dasgupta a prominent member) published guidelines for the management of polymyalgia rheumatica which recommended tapering at the rate of 1 mg every 4-8 weeks. Once again practitioners reading this document are made aware of the need for flexibility
The 2015 recommendation of 1 mg per 4 weeks is faster than any of the above recommendations and I assume there was significant discussion by the 40-50 individuals on the committee before they compromised at this number.
I'm sorry if I inferred Dasgupta willingly changed his position. I'm sure that he and others were less than pleased with this result. There may have been a gorilla in the conference room, and I would not be surprised if it was the ACR.
Dr Google can't help me. What is ACR?
The American College of Rheumatology
Ok. I wondered. I thought it would be something British, didn't know these recommendations were international. Considering how very different the management/mismanagement of PMR seems to be I'm a bit surprised.
According to a few patients, he has often done something similar in saying one thing and doing another. He has told them diametrically opposite things to what appeared in medical literature with his name on it. Including that having a negative TAB means you definitely don't have GCA. Which we know is rubbish.
"Once again practitioners reading this document are made aware of the need for flexibility" - it is mentioned in the 2015 Recommendations - but as I have said before, most doctors seem to not have internalised THAT bit. Ever.
Sometime after our slow approaches were being used fairly widely and had been shown to the rheumatologists associated with the charity, he told a patient to go from 8 to 7 by doing something like 888, 887 repeat, 877 repeat, 777, over a period of at least a month.
He never said where the idea came from - and it wasn't one he had used before as far as we know.
I'm sorry to hear of Dasgupta's wavering. His writings and high profile lead me to conclude he was a foremost authority on PMR/GCA..
He certainly was one of the first to give a high profile to GCA and without his work there wouldn't be as powerful a charity as we have nor the future implementation of the fast-track process for referral of query GCA patients. However, most doctors will say different things at different stages of their career. Perhaps his international and publishing work has detracted a bit from his work within his department?
I stumbled over the article when looking for something specific and as I read it, expecting the usual rather incomplete or slightly inaccurate picture of PMR and its treatment, I became more and more pleased with the approach and thought - this is the best article of its nature I've come across. There's not much to disagree with here!
Maybe get a second opinion? Or if you can't convince the doctor at least go to 8.5 for a month and then 7.5 for the next month. It's close to the time frame and the 10%. Good luck. I hope it continues to go smoothly.
TooSore, he's my 4th opinion, I've learned more form this forum than from any of the doctors I've seen. Thank you for your opinion!
Me too
From what you say your rheumatologist knows there may be a problem if he is talking about flares. He obviously has never had one!! Getting down to 10mg quickly does seem to be a lot easier than reductions at lower levels. I was told reducing half a mg below 10mg a month is ideal although some people go for 1mg a month, but to go over that is probably not a good idea. I personally would go for the slow system that suits you rather listening to someone who is keen to reduce the pred, doesn't matter how good he is. In fact if he is good he will understand. I have found taking it slowly is actually a lot faster than rushing downwards when you have to then increase all the time. You may be one of the people whose blood markers do not increase, which makes it more difficult to see if things are OK or not. Good luck.
Hi Kulina. I was diagnosed with PMR in late October (ESR normal; CRP moderately raised). I was initially put on 20mg pred by my GP which was reduced a week later to 15mg by my rheumatologist. I went from hardly being able to get out of bed to no pain at all. My rheumatologist had me on 15 for three weeks (once a day) then three weeks of alternating 15 and 10, then 10 for three weeks then three weeks of alternating 10 and 7.5. At 7.5, I felt mild discomfort in my shoulders but not in a way that impacted on my life at all. After three weeks at 7.5, I did three of 7.5 and 5 and then three weeks on 5. I didn't feel any worse on 5 than I did on 7.5. I'm now one week into alternating 5 and 2.5 and still don't feel any worse. After three weeks on 2.5 I have to alternate 2.5 and no pred for three weeks. It remains to be seen how I manage the final taper, but thus far I feel pretty good most days. I've also been taking turmeric paste (which is supposed to be an an inflammatory) and 60 ml aloe vera gel as suggested in the book by Kate Gilbert, I've no idea whether this has helped but I reckon it can't do any harm. Good luck.
Hi Therealsue, your reduction seems very similar to mine. Thank you for sharing.
Why not ask if you can try 1mg and 1mg 2 weeks apart? That is 2mg in a month as opposed to 2.5mg. Really not a lot of difference. If you can't manage 1mg you wouldn't manage the 2.5mg - but you will have got almost as far if it works.
How on earth can he say your PMR is "less severe"? He has no way of monitoring or assessing that. But the small reductions are just as much to avoid steroid withdrawal problems as in relation to the PMR.
And it isn't slow if it works and the patient feels well while doing it.
Hi Kulina,
Your situation sounds similar to my wife's. She was diagnosed with PMR May 2016 but placed on only 15mg Pred. Quickly the inflammation went away, so she was told to taper down pretty much like you. But, in November when she was told to toggle daily between 10 and 7.5, that is when her symptoms slowly came back. The rheumy still insisted on going down as far as 2.5. By then, all her symptoms were back. Since then, thanks to her GP, she has made it back up to 10mg, and she can now function, but there are times when she tries to do too much, she really feels the pain in the shoulder blades on below the buttocks areas.
Joe
Thank you Joe, I really liked this doctor, he was taking his time with the tapering but this time it seems way too drastic to me. He didn't even want to toggle between doses! This disorder is what it is and I really feel that we can't rush it. We have to listen to our bodies and "go with the flow" and I certainly don't want to go back to the pain I had 6 months ago. I wish your wife a pain-free healing. Garine
Hello everyone, thank you so much for your opinions and much needed support. I knew you would all disagree with his method. At the appointment, I had agreed with his drastic reduction because I already refused to take the Fosamax he prescribed. So, I thought I'd agree and figure out what I wanted to do once I got home. I agree with you all. I think I will flare and if I follow his advice and flare and go back up again or if I reduce by 1 mg every 2-3 weeks, time-wise I still have a reduction by the time I will see him in June, without the yo-yoing and pain. I don't understand the rush to reduce it. I will reduce by 1 mg every 3 weeks or so and see what happens. He also told me if I flare, it would be 3 weeks after the reduction but that's not what I hear from you guys. Thank you so much! Your advice means the world to me! 
It might be 3 weeks if you overshoot by just a small amount - if he's got you reducing 2.5mg at a time and you go from 10 to 7.5 and your "right" dose is 9.5mg you'd likely have returning symptoms sooner than that. Any that appear the day you take the lower dose or the next day are probably steroid withdrawal, that happens as soon as your body notices its usual dose is missing.
Isn't it a shame they don't ask the people who really do know?
Just an update on my new dose. You were all so right! My doctor wanted me to taper my Prednisone from 10 mg to 7.5 mg. Taking your advice, I lowered it to 8.75 mg (I know, weird amount but had to cut the pills I already had) for 10 days and I felt great. Some minor joint pain but didn't think it was too bad. Since I felt great, I lowered the dose to 7.5 mg and within 4 days I felt more pain and got tired in the afternoons. Today, a week into the 7.5 mg dose and I can hardly move because everything hurts. I started the dead slow method today between 8.75 and 7.5 mg. It sure has been an interesting experiment. Thank you again for all your advice and support.
Yes, I will. I will follow your Dead Slow Method and hope it will work for me too. Thank you PMRpro.
Hi Kulina. By the way I 'm not a lady, and therein I wonder why more women then men get PMR, abd I suspect also more womn than men get Lymphoedema. I was on prednisolone for 3 years and 7 months, and my doctor trusted me enough to reduce at my own pace, the dead slow method. I finished in December 2016, but have since had 2 separate weeks of 40mgs a day for 7 days, not for PMR but for severe chest infections with asthma.
It is the case for very many autoimmune disorders - far more women than men develop them. Of the 8% of the general population who develop a/i disease, nearly 80% of them are female. It is something to do with the innate immune response being different in men and women.
ncbi.nlm.nih.gov/pmc/articl...
is a heavy read but bits are clear enough,
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