Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

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I was diagnosed in November, 2021. Based on numerous testimonials on youtube and internet regarding inflammatory issues I decided to change my diet to vegan. Truthfully I can't say if my diet or the prednisone is responsible for my huge improvement but I've lost 23 pounds and am not experiencing the "puffy" face so many steroid patients suffer from AND my blood pressure has actually come down most of which I contribute to my diet. My doc wants me to stay on prednisone for at least a year and am I so fearful of a flare-up that I'm probably going to stay the course. Did anyone else come off prednisone more quickly?

@jkincaid21 There is much reading and information here and others will be more experienced in replying to you. From my reading here and other sites it appears those that try to come off quickly appear to relapse more than those that stay the course of slow tapering. I am unable to see a rheumatologist until June but I will be doing it slow no matter what. I am pain free and am living and doing my normal activities. Currently on 15mg for three weeks, 12.5 for three weeks then I am aiming to do 10 for five weeks reducing by 1mg every five weeks thereafter. That’s my planning from my research into PMR. The other factor it seems is ladies appear to have a harder time in some cases tapering. Keep safe and good health to you.

Hello @jkincaid21, I would like to add my welcome to Connect along with @legendsts and other members. I've had 2 occurrences of PMR but now it has been in remission since 2016. Like you and others I think an anti-inflammatory diet plays a big part in living with PMR. I didn't have an issue with the puffy face either but the longest I was on prednisone was my first occurrence and that was 3-1/2 years. I didn't start eating healthy and worrying about my weight until the second time around with PMR which lasted 1-1/2 years. I think as you taper off of prednisone you will be able to tell whether or not you are going to quickly. I started both times at 20 mg and eventually found a tapering schedule with my rheumatologists recommendation that worked for me. He also suggested I keep a daily log of the dosage and the pain level I was feeling when I first got up in the morning. That log really helped the second time around with PMR.

Did your doctor or rheumatologist provide or recommend a tapering schedule for you?

I was diagnosed 2016. 15 mgs took all the pain away but I did reduce too quickly a couple of times in the beginning and had flares, causing me to up my dose from 7 to 10 for a while. I am in my fifth year and am on 3 1/2 mgs for the last few months. PMR lasts an average of 5.9 years. Very few have remission by or before 2 years. Males get off more frequently. You might google the 2017 Mayo/Mathison study on PMR and prednisone which states the 5.9 years average. When reaching 10 mgs, it is advisable to reduce by 1/2 mgs on a slow reduction schedule. I have given my schedule a day or ago. You must also consider that once on long term prednisone,your adrenal glands cease production of cortisol and they must be awakened around 6 or 7 mgs. You cannot immediately stop using pred because of this. Sometimes it takes up to a year for them to function or not.

Hi John----My doc has provided a tapering off schedule in 5 mg increments. I found going from 20 to15 a bit problematic so since then I've been coming down by 1.25 mg and that seems to be working well. Just started 11.25 (bought a darn good pill cutter!) and hope to be at 7.5 by mid-May. I'm also very fortunate to have a hot-tub and created my own stretch and strengthen routine which takes about 25 minutes each morning and that is so helpful. I think it's very interesting that neither my family doc or rheumatologist seem particularly interested in nutrition or exercise as an important part of recovery. If that small prednisone pill can have such a profound effect on our recovery, how can we ignore the pounds of food we put in to our bodies each week?

anecdotely very slow tapering seems to be the norm..my rheumatologist suggested that i would be on prednisone for a year!! started on 20mg with rapid taper and rapid recurrence..restarted at 25 mg and have very slowly tapered to 15mg and feeling well but will do very slow taper from this point on...Has anyone tried acupuncture?

@peggyp, Thanks for the reference. I think this may be the study you mentioned.

Contemporary prevalence estimates for giant cell arteritis and polymyalgia rheumatica, 2015
-- https://pubmed.ncbi.nlm.nih.gov/28551169/

Dr. Matteson also has a YouTube video that members may find helpful - Living well with Polymyalgia Rheumatica

@jkincaid21 - You might get your doc to prescribe 2.5 mg and 1 mg prednisone tablets. That helped me tweak my tapering schedule and minimized the pill cutting. Although the last six months of my first time around I was going back and forth between 1 mg and 1/2 mg so I was cutting the 1 mg tabs. Exercise and diet really do play a big part in helping the PMR and keeping it at bay once you can taper off.

Here is a good article on Medical News Today that offers some suggestions for food.
What to eat if you have polymyalgia rheumatica: https://www.medicalnewstoday.com/articles/321683

The study was done 2017 and I have attempted to show it and a news article on it twice but your rules keep deleting it.