PMR still on 15mg prednisolone but have now seen rheumatologist
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Hi all, last time I posted I was waiting for an appointment with a Rheumatologist and had been on 15mg prednisilone for about 3 weeks with a good response but still getting some morning stiffness, much better than before treatment, that faded away within 2 or 3 hours of taking Pred. Since then I have felt progressively better, although still get some early morning stiffness esp in my right arm - legs fine and I’ve even been swimming. I saw a Rheumatologist privately just over a week ago who said PMR most likely diagnosis, although will keep an open mind given some ‘atypical’ features (my age (56) and a slower overall response to pred - significant improvement in 5 days rather than 3). By the time I saw him he noticed no signs of pain or restricted movement on examination and regards this as a good response. He has written to my GP with a suggested tapering regime and requested repeat bloods and a routine chest x ray, bone density scan as I’m also on thyroxine. He has put me on his nhs list for follow up. I genuinely feel much better now, and even the mild stiffness in the mornings is more than bearable and I doubt I would have gone to the Dr at all had this been all. I still find that if I over do it one day the next day stiffness is slightly worse but this always goes after the pred and does not return that day. So a couple of questions as I prepare for a discussion next week with my GP: is it usual for some aches and stiffness to remain (albeit much improved) as I describe? It is hard discussing symptoms with a GP that doesn’t see many cases and a specialist who admits he usually only sees unusual cases! On tapering the Rheumatologist has suggested staying on 15mg for a couple more weeks and then reducing to 12.5mg for 6 weeks and then down to 10. Does this sound right? my GP will be guided by me I suspect and I’d like to reduce initially more slowly at least getting to 12.5 in stages if I can maybe over a couple of weeks. Any views/advice?
1 like, 12 replies
Anhaga derek98287
Posted
I've read a number of times that a response of 70% improvement, or better, is to be expected. I, personally, experienced 100% at the beginning, but after 2.5 years I'd say PMR pain is at least 80% improved, perhaps better, but I've had a return of osteoarthritis stiffness and slight pain on movement. As for the reduction, many people are given a taper like this. The ones I read about are the ones who had trouble, especially with the second part, the 2.5 drop from 12.5 to 10. This is more than 10% of the dose and therein lies the problem. It seems generally more successful if we limit each taper to no more than 10% of the dose. On the other hand he is giving you lots of time to adjust to each taper, so that's a good sign. The slow reduction methods many of us use help to avoid most of the steroid withdrawal pain which generally speaking makes the whole tapering experience more tolerable. Others will be along with more advice about this. But all in all it looks like you are off to a good start. Hope you keep on feeling well!
EileenH derek98287
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What on EARTH is atypical about being 56 and having PMR? The guidelines say "over 50". There are a lot of us! And if 15mg wasn't quite enough - of course it took a bit longer! The latest guidelines say "The lowest effective dose in the range 12.5 to 25mg" because it has been realised that some people don't absorb as much pred as others and larger people need a bit more pred.
If it were me I might be happy to try 12.5mg and see if it works OK. But I would very much prefer to go slower to 10mg. And from 10mg absolutely not more than 1g at a time. You have a full 6 weeks - you could do 1.25mg and if that is OK the other 1.25mg 2 weeks later. It doesn't matter if the cut tablets are even, accuracy in cutting isn't critical!
Kdemers derek98287
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Anhiga and Eileen are right on, and the new info by Eileen is really interesting: The latest guidelines say "The lowest effective dose in the range 12.5 to 25mg" because it has been realised that some people don't absorb as much pred as others and larger people need a bit more pred.
derek98287 Kdemers
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Cyn1965 derek98287
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I was diagnosed December of last year and I am an atypical case being only 52 yrs old and having no signs of much abnormal in my blood tests. I was put on 10 mg and was amazed by the relief of symptoms - about 80%. My rheumatologist says that that is good because aiming for 100% puts you at more risk since prednisone has some bad side effects. My pain/stiffness was just barely there...I was recently increased to 15 mg so that I could go on vacation and not have any issues so now he wants me to reduce back to 10 mg now that I have returned. So far so good but I have had fever/col flu symptoms in January (got rid of that) and now again. I don't know if it is normal to be catching everything - it is very unlike me. I think that I can count the number of colds in my lifetime on one hand! Until now! Good luck
derek98287 Cyn1965
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EileenH Cyn1965
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Depends on the person - I have had fewer colds since being on pred (over 8 years), usually one humdinger per year!
I know most rheumies are terrified of pred but the most recent work shows it isn't justified:
https://www.medpagetoday.com/rheumatology/generalrheumatology/66912
His concept certainly seems strange in terms of "not aiming for 100%" - you need a starting dose that clears out all the inflammation and THEN you reduce the dose to find the lowest dose that gives the same result. In your case it may turn out to be 10.5mg - but that 1/2mg makes a world of difference over a few months!!!
Cyn1965 EileenH
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EileenH Cyn1965
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Most of us like to stop on a new dose for 3 weeks at least. You have to know you are reasonably stable and if you reduce too often you don't know where it went pear-shaped as it can take a few weeks for the inflammation to build up enough to cause symptoms. But when you have a doctor breathing down your neck it isn't so easy.
Anhaga Cyn1965
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Heed what Eileen says. I sped up my hitherto successful taper last year and triggered a flare. I had been waiting between tapers, usually only for about ten days, depending how I felt, especially as I got really low but, with non-renewal of a prescription, fearing I would run out of tablets I tried to taper to zero in .5 steps from 1.5. Two attempts to go to 1 mg ended up with me eventually after trying lower doses (3, 4) having to go to 7 for relief. I am now, more than six months later, approaching 3 mg again and it feels good but I'm not rushing, believe me. My doctor also learned a lesson, I think, and has now given me an extremely generous prescription.
Anhaga derek98287
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Being exposed to three little germ factors is probably a big factor for you. I have had more colds since starting pred, each year, this is my third winter, a little worse than the one before. Unlike you there are no little ones in my life, plus I've retired so no workplace exposure. I've had the pneumonia shot, and this year broke down and had a flu shot. I think pred has been slowly wearing down my immunity over the time that I've been on it. For years I used to not get colds at all, or just little sniffles that lasted a day or two.
Anhaga
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