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

I am 56 and was diagnosed with PMR in Dec 2019, been on Prednisone since Aug of 2019, was up to 30 mg/day for awhile then tapered down to 25 then 20 when put on MXT. Doing 25mg of MXT/wk with folic acid daily, no real side affects except moon face and appetite, bu only gained like 5 lbs. this PMR is a beast. Some mornings can’t hardly move or get out of bed and others not as bad, but have constant pain in shoulders, groin, hips, butt, elbow and now left thumb it. Stared doing diet to alleviate inflammatory foods, sugars, carbs... not sure it is helping yet, only been on for 2 wks. Want to taper off prednisone but found very slow process. Seem only 1 mg at time.. for week or 2. Any advise would be great. Have lost considerable strength and mobility. I stretch, do yoga and exercise best i can. My rheumatologist said it will go away 1-3 yrs, but my PMR support group says never goes away, only goes into remission. Some have had it off and on for 15 yrs!! Is this true?? Major life change. Family and friends have no idea of the pain i deal with.

@steelbh - I have moved your post here to this discussion @johnbishop recommended so that you can also get to know other members who have talked about polymyalgia rheumatica, like @rolandhp @gregp1 @jules11 @lumberjill @calicojoy.

I have been on prednisone before for stretches for my asthma, and I don't care for being on it. It's hard to sleep, and my husband does not prefer my personality on that med. 🙂 Others here may have some thoughts from their previous tapers off of prednisone. I always just followed a taper plan written on my pill bottle.

Is your doctor aware that you don't want to be taking the prednisone anymore? If so, has your doctor suggested a schedule for the taper?

Hello steelbh... I am so sorry that you have PMR.... I believe most people with PMR symptoms do go away in just a few years. There is lots of helpful information on this site about tapering very, very slowly. Read everything you can! Be your own advocate!

I was first diagnosed at age 44 with PMR... I've been dealing with it for 18 years. So yes, some people it lasts a good portion of their lifetime. The last flu vaccine I received in 2014 set it off again and I have felt it in my body ever since then.

I usually taper to 1 to 2 mg and stay there... which is fine with me to be able to live a full life with just a little pain. I'm very active ride Mountain Bikes, hike, chase grand kids!

Last September I got a virus in my chest, terrible cough that lasted almost 2 months. It set off the PMR again. Doc put me on a very quick prednisone taper 7mg to 0 in 6 weeks! I don't think he believed me when I said PMR had returned.

Once I came off the drug the pain came right back. I went in for labs last Thursday... blood works show inflammation on the rise, but SED rate is not over the "high" line. CRP is high, but not extremely yet. I know my body and if left unchecked without prednisone the inflammation will keep going up. So I am now waiting to see if the Rheumatologist will agree and prescribe Prednisone again, or if I have to suffer for a few more weeks to get higher inflammation markers. What a racket! So depressing... Quality of life is awful when dealing with this condition and having to prove you are in pain. 🙁

Tough situation when one must have to "prove" a flare of a longstanding condition as you have endured. Advocate for yourself with some written notes when you see the rheumatologist.

Having been on Prednisone for a year now, I too am trying to get off of it. I’m down from 80 mg. to 12.5 mg. per day. Got a laugh out of your husbands not caring for your personality while on it. My wife feels the same about me some days. On the steroid insomnia, I used to struggle with getting up in the middle of the night looking for things to do. Since I started taking melatonin 3 mg. a night, I have no problems sleeping. Being diabetic (brought on by the steroid), I have to get up several times at night, but I always go right back to sleep. I haven’t experienced any after effects of the melatonin, as with prescription sleep aids. No sluggishness the next day. Just a good nights sleep every night. Hope this helps some.

Wow! that is a long time to have this beast of a disease. I’m trying to taper off of 20mg, tried to go to 17.5 and pain was awful. So went back to 20 and now trying 19 mg. Seems like a long haul. How will i ever get below 10 mg??? My strength is so low... can’t hardly lift 20 lbs dumbbells when use to do 50-55...😐

John i believe u had posted that u used liquid turmeric? I can't find that post you had... how many mg/day of turmeric. I have really tried to change my diet towards a keto sort, to alleviate inflammatory foods such as sugars, carbs.. i'm not following a keto to the T, but I would say 90%... When I try and work out it hurts to lift any weights whatsoever, should I not lift if it hurts? or do you work through the pain, or will it damage where the inflammation is even worse? I also try and do some stretching and yoga and bike riding but not working out affects me mentally as it always has... sorry for all the questions but I would love to hear your wisdom and knowledge and appreciate this group.

@steelbh I take 1 tbsp daily of Qunol Liquid Turmeric - https://www.amazon.com/Turmeric-Curcumin-Qunol-Bioperine-Supplement/dp/B079T64N8K/ref=sr_1_1_sspa - the serving size is 15 ML (1 tbsp) and contains 1000 mg of Curcumin Turmeric and also contains Black Pepper Extract and a few other things. Sometimes I mix it with a glass of water to take with my other supplements. It mixes well with water, juice, coffee or most things and doesn't taste bad. Before I used the liquid turmeric I was using Qunol's Turmeric instant drink mix which also contains ginger -- https://www.amazon.com/Qunol-Turmeric-Absorption-Anti-Inflammatory-Supplement/dp/B07QF8RGXH/ref=sr_1_1_sspa

I do use 10 lb hand weights to help with my arms and shoulders but not as much as I should. Most of my exercise is using my elliptical which also helps with my arms and shoulders but is more weight bearing and like walking which is what I personally need. I'm no expert and have no medical training but I try and take a queue from my body. If I'm doing something and it starts hurting, I stop doing it. It might be something to discuss with your doctor. Last April I had a knee replacement and there were days I didn't want to do the rehab exercises but I did push myself some because the therapist showed me what I needed to do as part of the recovery and I tried to keep on schedule with it. I think the key is not to over do it but I think that is really dependent on the individual. You are definitely ahead of me if you are doing yoga and stretching exercises. I know that would help me but I just haven't made the time to do it....yet 🙂

I just started using intermittent fasting a few weeks ago and so far I am amazed at how much it's helping me with my weight struggle. Since you are following the keto diet somewhat, you may be interested in following a health journey blog by @LeeAase -- https://social-media-university-global.org/my-health-journey/
Lot's of good information on diet and exercise.

Keep up the good work with the diet and the exercise, and just take it one day at time!

When I first had this 16 years ago, my rheumatologist told me to avoid heavy weights, but to do a lot of range of motion exercise. Now on my 2nd or 3rd bout, I continue to follow that advice, He felt there was a risk of tendinitis with heavy weights. (I did get tendinitis from carrying heavy things!). My current rheumatologist also encourages range of motion exercises and also encourages daily exercise rather than a lot at one time. I always feel better on days that I exercise. Now that Sidewalks are clear of ice, I will try to walk daily.

Sorry it took so long for me to answer your post worked all day yesterday. To answer your question no I do not have any special diet but I am gluten sensitive so I do try to stay away from foods or beverage that contain gluten. I do not take methotrexate. Now along with exercise I found that if you stay busy during the day it keeps your mind off of your pain or discomfort try it & in the evening you will wonder you got through the day without the discomfort. I also never experienced any muscles pain. Now as I had said it is now mostly in my finger & wrist joints. At the gym it is hard to do any bench presses as it is compressing the wrist joint so I do pull downs & no pain associated with that work. Try it.