Flare
Posted , 12 users are following.
So I was diagnosed with PMR on Aug 19/16. Started on 20mg pred and have tapered down to 2.5 mg when flare started last week. Now up to 5 mg the last 3 days and still experiencing hip pain during the day and keeping me awake at night. It hurts! I am reluctant to go back to 10 mg but my body is not happy. So far it hasn't crept back into my shoulders, hands but what should I do??
0 likes, 34 replies
robby6859 jeniferaz
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jeniferaz robby6859
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Yeah. Kind of figured that out too late😒. I just don't like the possible side effects of Prednisone, so did too much too fast?
Nancy_O jeniferaz
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I started in May/16 at 20mg and am just down to 9mg. Take your time. It's not a race. I hate the side effects too, but the flare-up's are worse. I'll reduce 1mg every six weeks and when I get below 5mg, I will reduce by
.5 at a time. It's a balancing act for sure. My father had PMR and always needed a low dose for 40 years. Worked for him to enable him to have quality of life. Do whatever your body tells you it needs. Good luck
ricky23486 jeniferaz
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jeniferaz ricky23486
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Thanks Ricky
I can't get in to see a Rheumatologist until late Nov so have been relying on my GP for guidance. Unfortunately she isn't too familiar with PMR and the principle of SLOW tapering.
Hopefully the Rheumatologist will give me a better program for pain management!
ricky23486 jeniferaz
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anapp jeniferaz
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jeniferaz anapp
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Good luck with your colonoscopy tomorrow!
Guess I thought I could just be done with this illness quickly-silly me😉
Thanks so much for your input!
anapp jeniferaz
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Thank you and don't feel silly. I don't know about the others, but I didn't know what I was in for when I started either. You learn a lot in 5 years of Prednisone and even more from the experience and knowledge of others like those in this forum. Good luck.
FlipDover_Aust jeniferaz
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WOAH!!!! slow down girl!!! you've had this thing for two months, try aiming for 2.5mg in 2 years!!! lol
Have a look this link: https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
EileenH jeniferaz
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It's already been said: far too fast.
PMR is a chronic disease - you are looking at anything between about 2 and 6 years on some dose of pred. First you get the existing inflammation under control and then you reduce SLOWLY to find the lowest dose that manages the symptoms as well as that starting dose. Yes, I understand you don't want to be on pred, none of us do, but the reality is that you have a choice: you take enough pred to manage the symptoms (and that is all it is doing) until the actual cause burns out or you don't - and cope with the pain, which will also last for probably anything between 2 and 6 years. It might be less, but it might also be more. I've had PMR for over 12 years with no let up. There is no way to be done with PMR quickly - it is an autoimune disorder which came when it wanted to and it will go when it wants to. There is nothing known that you can do that will speed it up, just manage it well to allow a relatively normal quality of life with minimum pain and disability.
Never mind the "Dead slow approach" for now - we'll keep that for later but you could start by taking the "Bristol paper" to your GP, it was written by top PMR experts to help GPs manage PMR without recourse to a rheumatologist, and you will find the link in this post:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
They start at 15mg and keep you there for 6 weeks, Then at 12.5mg for 6 weeks. Then a year at 10mg. If you were diagnosed on 19 Aug you would just have got to the end of the 12.5mg level - not be at 2.5mg. That sort of reduction was setting you up for failure from the start. You have reduced so fast that you cannot know at what point you got to a dose that still managed the inflammation - so I doubt whether just going back up a couple of mg will do. It could be 5mg you need - or it could still be 12.5mg. You could try 10mg, but it may not work or it may take a long time to work.
I don't get it, I really don't. If you don't know how to deal with a patient who has a disease unfamiliar to you other than what the symptoms are, then what on earth is the matter with using the interneet to find the international recommendations issued by the experts? The 2015 international recommendations for management of PMR are available, free to air, and with a suggested approach:
A. Initial tapering: Taper dose to an oral dose of 10 mg/day prednisone equivalent within 4–8 weeks.
B. Relapse therapy: Increase oral prednisone to the pre-relapse dose and decrease it gradually (within 4–8 weeks) to the dose at which the relapse occurred.
C. Tapering once remission is achieved (following initial and relapse therapies): Taper daily oral prednisone by 1 mg every 4 weeks (or by 1.25 mg decrements using schedules such as 10/7.5 mg on alternate days, etc.) until discontinuation as long as remission is maintained.
Even at their rate you would still be at 10mg - provided you had had no problems. Our personal experience on the forums is even that is too fast and very optimistic. But it is far preferable to what you have been subject to.
mimi1950 EileenH
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ricky23486 EileenH
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jeniferaz EileenH
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You are awesome EIleeen! Thank you so much for sharing your most valuable knowledge on PMR. I will definitely print out the Bristol Paper and present a copy to my GP. In fact, I have copied out your whole dissertation so that I can keep on my desk for future referral. I am trying the 5 mg dose for a dew days to see if it will calm down. If not, will try 8, etc., until the inflammation is under control. You are truly a valuable asset to our PMR community!
mimi1950 jeniferaz
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I really relate to what has happened to you. I, too have been recently diagnosed with PMR and mistreated by a Rheumatologist who, as Eileen stated, prescribed an irrational course of steroids not in any textbook. I am appalled that doctors all over so readily prescribe PMR patients with corsés of Prednisone in a way that is harmful.It is no excuse that they are not experienced in PMR-anyone can look up the established protocol on how the prednisone should be dosed.
I only trust this forum now. If it weren't for the information I've acquired on here, I would still be yo-yoing on the prednisone,,a practice that compromises the course of PMR.