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??
Wow! I think maybe you have reduced way to fast.
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?
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
Sounds like the pmr is still there ....it takes its own time to burn itself out. The tapering itself was very very fast.. but you got to a dose which allowed the pmr to show you that it is still there! So it is telling you to go back up with your physicians help to a dose that keeps you pain free again. I went from zero back up to 10 mg. After having tapered from 15 mg over a two year period. Two weeks on no Prednisone and all the pain re- emerged. The group encouraged me to realise that it is more important to be functioning and pain free than hobbling around, not functioning and steroid free. Not to mention the possible damage being done internally by the unchecked inflammation.
Like Ricky, I too was off Prednione (for GCA) for two months, but was having enough muscle pain and weakness once off to keep me from activities, including keeping up the house. My Drs. have just told me to try 1 or 2 mgs. to see if it helps. Having colonoscopy tomorrow so will start after. That said, when I was on Prednisone for either PMR or GCA, whenever I got down to a dose where I was having symptoms again, I simply went back to the last dose at which I felt good so only ever went back up 1 or 2 mgs. Maybe you could try that. And yes, you did reduce way too fast so maybe you will have to go back up more and then come down s l o w l y. Took me 1 1/2 years to get off Pred for PMR and about 3 years for GCA.
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
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!
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!
If you have a look at the plan for dead slow tapering that Eileen put up on the site you will be at least, if not more, clued in on how to taper safely than some health professionals who push us to taper fast .
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.
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.
Thank you again, your help is invaluable. I have no stress anymore regarding PMR, stress that is very bad for it.
Standing ovation. Wow!
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!
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.
It sounds like your doctor thought that prednisone was actually a cure, when in fact all it does is treat the symptoms by dampening down the inflammation which causes pain. Take away that symptom control and of course it all comes back. As we often say on this form "It isn't slow if it works". I was diagnosed and started treatment June 2015. I am currently at 3 mg (as you can see infinitely slower than you) and am soon going to attempt to reduce to 2.5 (second attempt). I think it is interesting and encouraging that you didn't flare until such a low dose, but it may take you a while now to find the dose which controls your symptoms effectively. Patience! You can do it!
Thank you for your encouragement. And you're right, I am not a very patient patient! I understand now that in this case, patience is truly a virtue and must be diligently practiced 😉
Now my mission is to find the magic dosage. I love this blog!
Unfortunately you go back up with pred dose like all of us....get on top of the
pain with the pred or it will just keep getting worse, 5mg may not be enough. I was diagnosed about
two and a half years ago and the ups and downs with pred has been my life. Started at
20mg and got down to 4mg a day when sciatica laid me low....worst pain....
sed rate shot back up and doc put me back to 20 mg.
I've been trying to reduce and stay down ever since. This time I'm going to
do the reducing at a slow, slow, slow pace.....good luck and welcome
to our neighborhood.
Anhaga - when reducing to 2.5 do you cut the pills in half? I asked two different pharmacists whether it is ok to cut prednisone pills in half (that don't have a line marked down the middle indicating equal distribution of dosage on either side of the line) one pharmacist told me it is ok, the other said it wasnt. I wrote to the manufacturer..... they didn't reply..... so I wonder.