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

@munchie, I really don't think anyone doctor or patient really knows the answer to your question. I've had two occurrences of PMR with 6 years in between them. The first one lasted 3 and half years before I could taper off of the 20 mg prednisone used at the start to control the pain and inflammation. The second one last 1 and half years before I could taper off of the same 20 mg dosage. I'm sure others have similar experiences. My Mayo rheumatologist also told me that the disease/condition stays with you but just is under control or in remission.

Here's some more info I found that kind of infers the same ... "However, they do not cure the disease. The low-dose corticosteroids used in PMR are almost certainly ineffective in the prevention of vasculitis progression. It has been found that remission of PMR seemed to be achieved with a 15-mg/d dose of prednisone for most patients. Jun 20, 2012" -- Polymyalgia Rheumatica: A Severe, Self-Limiting Disease: https://www.uspharmacist.com/article/polymyalgia-rheumatica-a-severe-self-limiting-disease

@kmeikle1 - The 2 year average comes from the articles similar to the one above from 2012 that contains this excerpt - "Approximately 50% to 75% of patients can discontinue corticosteroid therapy after 2 years of treatment, and patients with PMR should be monitored regularly and carefully for symptoms and signs suggestive of GCA development.11".

Definition of remission and relapse in polymyalgia rheumatica: data from a literature search compared with a Delphi-based expert consensus: https://ard.bmj.com/content/70/3/447

Excellent article John. Thanks for the link.

Hello - I'm 69 yo male. and I have been diagnosed with PMR and highly suspect that it was triggered by the Pfizer Covid -19 Vaccine, perhaps in conjunction with Dupixent. Awaiting further guidance from my Dr. - and can't go on Prednisone yet since I had just received the 2nd dose of the Vaccine. This is new, came on gradually after the 1st Vaccine. Suspect that Dupixent may be a factor. Read various articles about dealing with pain, good diet and exercise - I feel like I aged 20 years in two weeks - not fun!

Hello @cjh51, Welcome to Connect. I have PMR but it has been in remission since mid 2018. I have also had both Pfizer shots and my first Shingrix vaccine with only minor side effects. Sorry to hear that your PMR may have been triggered by the vaccine and possibly Dupixent. The last time my PMR surfaced in 2016 is when I started making some lifestyle changes and eating healthier to help with the PMR as well as other stuff I had going on. I'm sure you already have seen information similar to the following but just in case...

What to eat if you have polymyalgia rheumatica: https://www.medicalnewstoday.com/articles/321683

I know the feeling of waking up and not being able to move. When did your doctor say you could start on prednisone to control the PMR?

Hi John - thanks for your reply and the article link - yes doing lots of research and reading about PMR, diet, etc. I will start Prednisone tomorrow!

It is interesting about the duration of PMR - very sad to read about those with chronic long term impacts and effects and need for medication for years. I have heard and read about folks that had PMR triggered by the Shingrix vaccine, typically seemed to have short term effects and Prednisone for 2 - 3 months. Others unknown what triggered their PMR condition and who took a 5 month dose of Prednisone have clearly had their conditions improve, or go into remission. Hope is that in my case, with PMR likely triggered by the Covid 19 Vaccine (Pfizer) that short term treatment with Prednisone, good diet, stretching, etc will be the "cure". I haven't seen research but seems like there must be some difference between these short term, triggered PMR conditions, and those with long term chronic cases.

@cjh51 - When I'm trying to locate medical research papers of hard to find information I use Google Scholar (https://scholar.google.com/) which I've found quite useful. The only real problem with it is some of the articles are research papers that you only can read the abstract unless you purchase the article which I've never done. If you find a lot of information, chances are good that there will be many of them with free access. Here's a search I did using "PMR + differences in duration"
https://scholar.google.com/scholar?hl=en&as_sdt=0%2C24&q=PMR+%2Bdifferences+in+duration&btnG=

Hi John, I was wondering if you have ever heard about stem cell therapy as a possibility for relief from PMR?

Hi @kimh, I have not heard of any successful stem cell therapy treatment for PMR. A quick search turned up one reference from a stem cell clinic in Texas that advertises stem cell therapy for PMR using your own fat cells. I for one would never consider any smaller stem cell clinic that is not part of a major health teaching hospital such as Mayo Clinic, John Hopkins, Cleveland Clinic, etc.. I do not believe there have been any clinical trials for the procedure that I am aware of so it's really unknown territory and you don't know what the outcome will be. Of course this is my own non medical opinion. It certainly may be on the horizon for treating a lot of different conditions but extracting your own fat cells and processing them takes a really super clean lab and I'm not the trusting kind for a small clinic with a backroom I can't see. 🙂

Here's a couple of articles that kind of talk about it...

- Safety Analysis of Autologous Stem Cell Therapy in a Variety of Degenerative Diseases and Injuries Using the Stromal Vascular Fraction: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5633095/
- Adipose tissue stem cells in regenerative medicine: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5880231/

I haven't provided an update on my polymyalgia rheumatica (PMR) for awhile so thought I would find out how others are handling COVID and other vaccines along with their PMR. My PMR is still in remission although I do have some days that I'm a little stiff when I get up in the morning. I do about 30 minutes of non-cardio riding on my cross-fit exercise bike (think slow motion 🙂) and continue to watch what I eat to keep my weight under control. I've had both Pfizer COVID shots and my first Shingrix vaccine with only minor side effects which are the normal ones others have reported - sore arm after the 1st Pfizer shot, extreme fatigue day 2 after the 2nd shot. Just a sore arm the 1st day after the Shingrix shot.

@beryl @kdmorris @alanbruce @lindapc @rolandhp @kdmorris and others - How are you doing with your PMR? Are you still on prednisone and tapering down or have you been able to taper off and keep your PMR under control?