Tapering off of Prednisone

Hello @jpalexander, Welcome to Mayo Clinic Connect. Thank you for the private message. I thought I would answer here in the Tapering off of Prednisone discussion so that you could meet other members and learn what they have shared. It's easy to be depressed when thinking and feeling that you will never be able to taper off of prednisone and you asked if I knew other members who have been able to taper off of the drug. I am one of what I think are many members who have struggled when taking prednisone but managed to taper off but I know there are others here.

My PMR is currently in remission. I've had two occurrences of PMR. Both were treated with prednisone starting with a dosage of 20 mg. The first occurrence it took me 3+ years to taper off of the drug. The last 6 months or so was going back and forth between 1 mg and 1/2 mg of prednisone until I was finally able to stop taking it and only had minor stiffness and not much pain. The second occurence came 6 years after that and it took me 1-1/2 years to taper off of prednisone.

What I learned tapering off and working with my rheumatologist was that each of us are different. When I was down in the dumpers trying to taper off and had been stuck at 1 mg for awhile, my rheumatologist shared with me how another one of his patients had finally been able to taper off after being on 1 mg of prednisone for a year. I think you just have to listen to your body and if it doesn't feel right, slow down the tapering effort.

Oh, yes… I do think about my PMR coming back. I call him Mr. Nasty and he is definitely no fun to be around. I think we can't worry about the future but we can make choices that will help us on a day to day basis. Hoping your journey get easier every day.

@alanbruce @reagan1mc @rolandhp and others may have some suggestions for you.

@jpalexander have you made any lifestyle changes to try and help you taper off of prednisone or have you discussed it with your rheumatologist?

Thank you all for sharing your experiences. There is one question I have regarding tapering off and it is that there seems to be an assumption from many respondents that the original PMR has gone and that any symptons or difficulties in tapering off prednisone are a result of the tapering or withdrawal itself and not the underlying disease.Is this what you are assuming and if it is how do you know it is true?

That is a great question. My guess is that both are true, but have not found much information. In my experience, in my first bout with PMR, it took me 2 years to get off prednisone and the PMR was in remission for 12 years. In my second bout, I was off in 10 months, but it was back 10 months later and I feel it was never really gone. I have now been on prednisone since January and currently on 6 1/2 mg, going down slowly. Every 1/2 mg is a challenge.

@heretaunga1947 @virginiaj and others, I'm certainly no expert and have no medical training or background but the way my rheumatologist explained it to me is that once you have PMR it never goes away but it can go into remission with treatment of the cause of the symptoms (inflammation) which is what the prednisone treats. Each of us are affected differently and can take longer to taper off of the prednisone and there are things we can do to help reduce the symptoms and keep them at bay when/if the PMR goes into remission.

Here's an older study on the question -- Definition of remission and relapse in polymyalgia rheumatica: data from a literature search compared with a Delphi-based expert consensus: https://pubmed.ncbi.nlm.nih.gov/21097803/

Here's some more information - citation from article below... "Without treatment, polymyalgia rheumatica sometimes goes away on its own over several years. With treatment, symptoms lessen or go away within days. Treatment is generally necessary for at least six months. And it often continues for one to two years or even longer.Apr 18, 2019" -- Polymyalgia Rheumatica - Harvard Health:
https://www.health.harvard.edu/a_to_z/polymyalgia-rheumatica-a-to-z

I've had 2 occurrences of PMR. The first time took me 3-1/2 years to taper off. The second time it took me 1-1/2 years to taper off. I started making lifestyle changes which I'm sure has helped - eat better, exercise more (in the keep moving category 🙂 ).

Hoping for a pain free day for all my cyber friends with their PMR and also that it goes into remission ASAP!

Thank you for all that information John. At last it is beginning to make sense, particularly when you say the prednisone treats symptons of inflammation and that pushes pmr into remission. So its always with us - cheerful thought - and we look after ourselves and try and prevent flare ups. Thanks again.

@johnbishop John, I was wondering at what point did your dosage change considerably during the 3.5 years? Did you start at 20mg/day and at what point did you start your taper? the reason i ask is i know everyone is different but I am at the 7 month mark having averaged about 20mg/day and was asked to try and decrease to 10mg/day by September. When I hit 15mg/day for 4 days the PMR came back with a vengeance and I am now 4 days trying to climb out of this pain by going back up on the prednisone, overshooting my original mark to get things under control. I have recently started methotrexate at 15 mg/week in an attempt to "spare" the prednisone. My question is for everyone who has these relapses, do you find that you need to go above previous dosages to get it back under control? Thanks

@phoenix0509, I did start both occurrences of PMR with 20 mg prednisone. My rheumatologist suggested I keep a daily pain log and record the dosage as I was tapering down. He wanted me to taper off slowly and suggested I try going down by 2.5 mg every three days but that I could adjust up or down to find something that works for me. I was at around 10 mg prednisone at the 7 month mark my first time around with PMR. During that time I did go up and down a few times when the pain was too much. For me, i tried to only go back to the previous dose that was working and not higher. I never had to use methotrexate. One thing that is helpful when you are tapering is to have your doctor give you scripts for 1 mg, 2.5 mg and 5 mg prednisone tablets. That way you can easily go down or up in smaller increments.

Have you had a chance to discuss the pain flare with your rheumatologist to see if they have any suggestions?

@johnbishop , this is my first major pain flair and I will discuss with Rheumatologist at next tele-medicine visit. When I say major flair I mean almost total body pain it seems and it is not responsive to small prednisone dosage changes nor is it terribly responsive to pain medicines. I also have SFN and my feet and hands hurt from that, but nothing like PMR. I find PMR to be one of the most painful conditions I have experienced along with overwhelming fatigue. John are you aware of anybody who has entered into a clinical trial
of Tocilizumab (Actemra) for PMR ? Thanks

@phoenix0509, I think @paddington has posted about taking Tocilizumab (Actemra) injections for GCA and may be able to offer some insights on it's use. I found an article that mentions it's use for PMR but I'm not sure who has taken the drug to treat PMR.

Tocilizumab Found Steroid-Sparing in PMR - A second small study showed benefits for tocilizumab in polymyalgia rheumatica:
-- https://www.medpagetoday.org/rheumatology/generalrheumatology/57894?vpass=1

I was diagnosed with PMR in March of 2020. I started out on 50mg of prednisone and reduced the dosage by 5mg every 2 weeks.
I am now at 10 mg per day, but have pain developing in my right shoulder. Anyone here that can relate to this? And if so what advise do you have.