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Polymyalgia Rheumatica (PMR): Meet others & Share Your Story
Polymyalgia Rheumatica (PMR) | Last Active: Jan 27 8:38am | Replies (1879)Comment receiving replies
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.
Replies to "I am 56 and was diagnosed with PMR in Dec 2019, been on Prednisone since Aug..."
Hello @steelbh, I would like to add my welcome to Connect along with @rolandhp and other members. There is another active discussion for PMR where you can learn what other members have shared and your post will have more visibility. I'm tagging our moderator @lisalucier to see if she can move your post to the following discussion:
> Groups > Polymyalgia Rheumatica (PMR) > Polymyalgia Rheumatica (PMR): Meet others & Share Your Story
-- https://connect.mayoclinic.org/discussion/polymyalgia-rheumatica-pmr-meet-others-share-your-story/
I have a friend that has PMR that was diagnosed around the same time as my first occurrence back in 2007. He was able to taper off of prednisone in about a year and it has stayed in remission. It took me a little over 3 years to taper off and it came out of remission in 2016 then it took me about 1-1/2 years to taper off the second time. Hopefully mine will stay in remission permanently. I think there are things you can do to help, one being a healthy diet and staying as active as you can without over doing it. Here's some information on diet and supplements that are helpful. I also take liquid turmeric (Qunol brand) to help with the inflammation.
Diet and Supplements for Polymyalgia Rheumatica (PMR) -- https://www.arthritis-health.com/blog/diet-and-supplements-polymyalgia-rheumatica-pmr
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. 🙁
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Hi my name is Roland yes PMR is a beast & where you are experiencing pain & discomfort is normal. Now I have had it for 4 years now & am stuck on pred. 2.5 mg/day, as far as going away yes they say 1 to 3 years but here I am at 4 years. My pain is now down to both wrist & fingers not bad considering that hips & shoulders are now fine. Mayo says that up to 40% of the people that have PMR never goes away not to encouraging but life goes on . I have started taking 15 ML of liquid turmeric 1000 mg a day & it does help. Turmeric in liquid form as any liquid is quickly absorbed in ones system vs powder or pill. Qunol is the product name which you can get at Wal-Mart or Costco. Also plenty of exercise is recommended I do my gym work in the morning yes getting out of bed in the morning well I don't have to tell you it is not good. Now I am 79 yrs young still motorcycling & snow skiing. Keeping going is the secret. Best of luck with your PMR.