If there are still symptoms of pmr when on a low dose should one keep reducing? Is the idea of reducing whilst symptoms are still there and blood tests above normal a good idea? It's just that my rheumy seems determined to get me off the preds as quickly as possible and most consultations are a battle about this. I say battle but in actual fact if I insist he soon gives way. It's just that I would like a bit more come back from him I suppose.
I was diagnosed in June 2014 and started on 20mg. By May 2015 rheumy was trying to get me from 8 to 7mg. His advice was to take 7mg for 4 weeks and then 6mg for 4 weeks. Thankfully I found this wonderful forum and realised that he was going far too fast. I put a brake on him and said I was going back to 8mg which was the last dose I had felt OK on. I stayed at 8mg for quite a while and then by doing the slow reduction method I got down to 5mg by August 2016. I stayed on 5mg until September this year. We had a 5 month trip to NZ over the winter and on your advice I stayed on that dose until we returned. In early September rheumy said to go down to 4 for 4 weeks than down to 3 for 4 weeks. Ha, ha. Anyway I have done the slow reduction down to 4 and seeing him tomorrow. No intention of going down to 3 until I feel things have stabilised.
I certainly don't feel as well as I did on 5mg but don't think it's a flare just a bit more discomfort.
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Deemar
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Ask your consultant to arrange a Synacthen test (put that in your search engine and read up on it. It can be a short test to see if your adrenal glands have woken up and started working.
Then depending on the result of that test, you can then decide how to reduce and see how it goes.
You can also send for two reductions plans, free of charge, by emailing pmrgcafightersne@gmail.com and subject heading Reduction Plans. Then you can follow either and probably comply with what your Consultant wants to do, after you have had the test.
No point in reducing at any level if you have PMR symptoms. Trouble is sometimes on very low doses the normal aches and pains of life come back, so you’re not always 100% what pain is what.
If you managed well on the slow plan then very good, but I would suggest you maybe try 0.5mg taper from now on - many doctors sneer at 0.5mg making a difference, but many patients would disagree
Good luck.
So glad you had a good time in NZ, I’m going thataway in just over a week’s time. Yippee,
I suppose doctors are between a rock and a hard place. On the one hand Prednisalone is the only and a wonderfully effective drug for our pain and inflammation and on the other hand large doses of steroid taken over a long period of time can have a catastrophic effect on bodily systems. So they sit on a fence, or make us feel guilty, or order us off them. It's bonkers really. What they want to say is on your own head be it.
The beauty of a supportive site like this is it manages to hold both notions in its advice. Yes it is a wonderful ,terrible drug. Nobody wants to be on Pred for a moment longer than necessary. PMR is a very painful, totally disabling illness. Pred, restores you to a functioning state, side effects not withstanding. No sooner we achieve 70% plus relief of our presenting symptoms we start very gradually with our tapering programme. The aim being to reach a dose that we can manage at until the disease itself burns out. Not a dose where we become all too aware of the active disease beneath with the familiar pains and stiffening up - usually in just the way it began with you. Pred does nothing for the deathly fatigue, it possibly adds to it. So don't expect to feel full of beans. If you cast your mind back to your early symptoms, you are in a better place.
PMR can last for years. Small maintenance doses of Prednisalone have been shown by recent research to be relatively harmless. Operable cataracts can occur so you need to be alert for them, apart from that an aim for a dose of 5 mgs a day is not unrealistic and may well keep the disease at bay until it has gone.
You Delmar, are doing beautifully, do not be deflected.
Rushing gets you right back to the beginning, branded a failure, and given horrible drugs like Methotrexate that seldom help .
The value of Prednisalone in the treatment of GCA cannot be overstated, saving eyesight! The same goes for a gentle reduction.
But we aren't generally on "large" doses for PMR. Most problems with rheumies seem to arise at below 8mg, the physiological dose. The Matteson study should be required reading for them all:
Hi PMRPro, I was trying to emphasise the point that the "fear" comes from evidence of harm done by long term high doses. This would not apply to PMR level doses.
No. You are never reducing reletlessly to zero, you are reducing to find the lowest dose that manages the symptoms as well as the starting dose did. When symptoms return you stop, go back to the last dose that worked - hence the advice to stick at each new dose long enough to find out if it still works - and wait a bit before trying another reduction in the taper. Maybe it will work if you do a smaller step, But if you have symptoms - no reduction. And if your blood markers are creeping up - absolutely no reduction. That is a sign that the inflammation is building up. Even a rheumy can't accuse you of inventing THAT!
You are just over 3 years in - not long at all, 4 to 6 years is the average for half of patients, a quarter of us take even longer. You are well below the physiological dose (8mg) where most experienced doctors stop worrying and a new study by a top PMR expert, Eric Matteson, shows the doses used in PMR do NOT, after all, cause more problems for patients than people not taking pred experience:
If he argues - show it to him. Take a printed copy with you.
If you have discomfort at 4mg you didn't at 5mg be careful - I had that 2 years ago and went back to 5mg as it was simpler (just one tablet!). But the following January I had a BIG flare and was back to 15mg - doctor's orders, I would have tried 10mg. But I needed the 15mg and it took me over 18 months to get back to 5mg - where I started to niggle again. No question this time - back to 7mg and pretty much perfect. For the sake of 2mg, which is peanuts at this level, I feel better. As my doctors say - you need what you need.
PMRpro, I'm glad you brought up the Matteson study. I brought the article to my rheumatologist a couple of weeks ago and it changed everything. No more pressure to speed tapering and, more important for his future PMR patients, he now seems completely relaxed about the whole process. For anyone having trouble with rheumies, I highly recommend just handing over this article. Instant credibility! Wish they trusted their patients like that...
Hallelujah!!!!! Thank you so much for posting this!
I'm sure Eric Matteson will be delighted! I believe he has written an article for the PMRGCA NE charity - in the hope we can get it more widely disseminated. I've said it for the last at least 5 years - but I don't have the right credentials...
Just occurred to me - can you post this as a new thread please. The more people who see it the better. And we can find it...
Many thanks for all the replies. I would dearly like to show the Matteson report to my rheumy but he speaks no English and it could take me a while to translate it and certInly not able to before my visit this pm! (I'm in France). I'll do it for next time. Will aim to stay on 4mg for a while and see f things settle down. When I feel the time is right I'll do the 1/2 mg slow reduction.
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