PMR Relapse

Posted by kharquail @kharquail, Jun 21 8:12am

My father has relapsed PMR and i was wondering what other peoples experiences were with it? How long does it last? How are you treated? For those of you hose on Prednisone, what is the doseage and for how long?

Hello @kharquail, Welcome to Mayo Clinic Connect and thank you for helping your father. Not sure anyone including his doctor or rheumatologist can answer how long it will last. Prednisone does seem to be the drug that is prescribed the most and most helpful. I'm 77 and have had two occurrences of polymyalgia rheumatica (PMR). Both were treated starting with 20 mg prednisone and instructions to taper off when possible. My first occurrence lasted 3+ years before I was able to taper off of prednisone. The last six months was going between 1 mg and 1/2 mg dosage until I was finally able to taper off. Six years later the PMR came out of remission and I again started with 20 mg dosage but I was able to taper off in about 1-1/2 years which was a couple of years ago.

One of the things that helps is exercise and using a tapering off schedule that works which can be hard to figure out since each of us are different. My rheumatologist gave me a suggested schedule but then was also supportive and offered suggestions when I was not able to taper as quickly as he thought it would go. A lot of people struggle with weight gain from prednisone so it was a little better for me the second time around since I was more conscious of gaining weight. I started looking at diet and lifestyle changes for helping with my autoimmune diseases after reading Dr. Terry Wahls book – The Wahls Protocol. She has an amazing story about how diet helped her MS symptoms – https://terrywahls.com/about/about-terry-wahls/. I've mostly focused on reducing or eliminating processed meats, sugar, fast food, and fried foods.

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

@flicka, @paulinef, @olegraymare, @rolandhp, @barbararene, @mach92, @alanbruce may be able to share their experience that may be helpful for your father.

@kharquail, Are you able to share a little more about your father's diagnosis of PMR? Is this his second time around with PMR?

REPLY

I live on the west coast of British Columbia and have often wondered if climate has anything to do with PMR? Before being diagnosed, I took lots of ibuprofen, naproxen, diclofenac, nothing worked except the prednisone. I took it for 12 years. Lucky for me, I did not get the eye problem, but did experience every other side effect. Taking the main dose all at once did not alleviate my pain, but taking half in the morning and the other half at night helped a lot. I experienced 2 flare-ups and had to start over again with the original dose of 20 mgs. When decreasing, I only decreased by .5 mg and then only after 6 weeks or longer and stayed on a maintenance dose of 1 mg for almost 2 years. I have been off for 2 years. After being diagnosed, the rheumatologist told me that it does come back, I am 78 now, sure hope not!! Reading a support group from all over the world helped a lot and prednisone is certainly the drug of choice.

REPLY
@bunkysmum78

I live on the west coast of British Columbia and have often wondered if climate has anything to do with PMR? Before being diagnosed, I took lots of ibuprofen, naproxen, diclofenac, nothing worked except the prednisone. I took it for 12 years. Lucky for me, I did not get the eye problem, but did experience every other side effect. Taking the main dose all at once did not alleviate my pain, but taking half in the morning and the other half at night helped a lot. I experienced 2 flare-ups and had to start over again with the original dose of 20 mgs. When decreasing, I only decreased by .5 mg and then only after 6 weeks or longer and stayed on a maintenance dose of 1 mg for almost 2 years. I have been off for 2 years. After being diagnosed, the rheumatologist told me that it does come back, I am 78 now, sure hope not!! Reading a support group from all over the world helped a lot and prednisone is certainly the drug of choice.

Jump to this post

Hi @bunkysmum78, Welcome to Mayo Clinic Connect. Thanks for sharing your PMR story and experience. It really does help to hear from folks all over the world. I'm 77 and have had PMR twice. I'm with you in the sure hope not again category!

REPLY

@kharquail, How is your father doing with his PMR? Is he still trying to taper off of Prednisone or made any lifestyle changes to help with the PMR pain?

REPLY
Please login or register to post a reply.