Connect
Polymyalgia Rheumatica (PMR): Meet others & Share Your Story
Welcome to the Polymyalgia Rheumatica (PMR) group on Mayo Clinic Connect.
Meet other members who are dealing with PMR. Let’s learn from each other and share stories about living well with PMR, coping with the challenges and offering tips.We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Grab a cup of coffee or beverage of choice and let’s chat. Why not start by introducing yourself? What's your experience with PMR? How are you doing today?
Like
Helpful
HugInterested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
Connect
Hi - I was diagnosed with PMR in November of '25 and have been on prednisone since then. Prednisone helped a lot initially but when tapering down to ten I flared and it hasn't stopped - even when adding mexotrexate weekly. In fact the mexotrexate has made me dizzy and done nothing to help with the pain. I've had three doses of the mexotrexate so far. Anyone else on mexotrexate - or have success stories???? I could use encouragement as I just had to cancel a trip I was looking forward to due to fatigue and pain. Thank you - Jodi
-
Like -
Helpful -
Hug
1 ReactionWelcome @jodirothe, Sorry to hear that you are struggling with the tapering down with prednisone and had to cancel a trip. It's not an easy task and a little different for everyone. You are not alone and there are quite a few members who have experience with methotrexate. Here's a search of Connect listing the different discussions and comments from members with links to their posts - https://connect.mayoclinic.org/search/.
I struggled with tapering off of prednisone during my first occurrence of PMR and it took me 3-1/2 years before I was able to stop the prednisone. The second time around six years later it was a little easier and I was able to get off of prednisone in 1 and half years. You might find this discussion started by @dadcue helpful, especially the reference links in the discussion description:
-- How to Slowly and Safely Taper Off Prednisone but ... no set rules.
https://connect.mayoclinic.org/discussion/how-to-slowly-and-safely-taper-off-prednisone-but-no-set-rules/
Are you able to discuss the tapering and symptoms with your rheumatologist or doctor to see if they may have some suggestions?
@lhk2
Perhaps ask your doctor if you can split your prednisone dose; ie. 10mg in morning and 5 in the evening. This helped me a lot and I wake with far less pain and stiffness. It did not really affect my sleep that much.
-
Like -
Helpful -
Hug
1 Reaction@pmr100 Hello, I just found this forum and started reading the newest part of this megathread and yes. I had the flu and Covid booster vaccines in October of 2025, and within two weeks or so had my first PMR symptoms but wasn't diagnosed until January of this year as we were living in Europe for a few months (US resident), and I didn't really have regular medical care access, so the diagnosis was delayed.
Most doctors I have spoken to disagree that it could be causally related, but as someone else said here, the immune system trigger may well be all it took.
Good luck.
-
Like -
Helpful -
Hug
2 Reactions@bkearbey1 I want to hug you when I read "I am all over the place here and I am sorry if you are reading". I'm not sorry that I'm reading at all. My brain is like a blinking neon sign right now wanting to describe all the ins and outs of my journey with PMR/GCA (maybe yes?)
Right now I don't have the energy to get going but my over riding thought is does mild trauma lay dormant in our systems somehow and then manifest as an autoimmune deficiency?
I'll try to compose something later on, but for now just know that I too had a bike mishap a few years back. I was standing next to my ebike when my hand hit the throttle and the bike took off with me holding on, until I didn't. 75 pounds of ebike landed on top of me (with my osteoporosis). I suffered severe abrasions on my left knee and elbow. I was convinced that I had broken my elbow, but no break on x-ray. I could go on.
I've had neuropathy symptoms that preceded that accident. Another story for another day. (Maybe it's my turn to say "sorry you're listening") I had Covid for the first time December 2024. My main complaint was body aches, fatigue and eventually loss of smell. I did not have respiratory symptoms to speak of except what I would call mild allergy complaints.
When I first thought something was different with my neuropathy symptoms, because it was more like pain than numbness & tingling, I initially thought to check for Covid because of extreme body aches, fatigue and dry cough. Negative. Rather suddenly I started developing lower body pain symptoms of PMR at night and slow but sure that led to morning stiffness that wouldn't subside until late morning. I'll stop there. There's a more recent piece to my story. I'm presently trying to get back on track to a successful taper.
Well, Bill, I guess you got a taker in terms of correlation from this 73 yr old once fairly fit white female. I'm still managing to work my one day a week as a cashier on my feet for 8 hrs which includes lifting and bagging. It's not comfortable. But somehow I think that the social engagement and movement may be integral to my remission. I'm determined.
-
Like -
Helpful -
Hug
2 ReactionsSorry to hear about your PMR . The most important thing to do is the taper and to get your own body starting to produce what it is missing and needs. That means exercise at least 60 minutes a day , Like a stationary bike and taper in smaller doses only after you have stabilized where you are. Sometimes 1 mg is too much. So stabilizing where you feel good, Exercise and decrease with smaller amounts. For me it was at 5-6 that I hit the the point where I needed to taper in smaller amount. It took me about two years to taper from when I first noticed it to totally getting of it(Prednisone) and only prednisone.
-
Like -
Helpful -
Hug
1 Reaction.The most important thing to do is the taper and to get your own body starting to produce what it is missing and needs. That means exercise at least 60 minutes a day , Like a stationary bike and taper in smaller doses only after you have stabilized where you are. If you move too quickly as we all know ,that pain is too great and we then go back to a higher dose.Sometimes 1 mg is too much. So stabilizing where you feel good for 5-7, maybe longer days first is always best, at least for me. Exercise and decrease with smaller amounts even as small as a 1/4 of 1 mg. For me it was at 5-6 that I hit the point where I needed to taper in smaller amount. it started out as 1/2 and I went down to the 1/4. It took me about two years to taper from when I first noticed it, to totally getting of it(Prednisone) and only prednisone.
The other thing that was so important for me was to remove the stress from my life.
-
Like -
Helpful -
Hug
1 Reaction@pmr100
I have a similar story. I received both a Covid and Flu vaccine in October 2015. I hesitate to link it to my PMR diagnosis in early December, 2025 because I am a strong supporter of vaccines but….. My quick diagnosis was due to a family history of PMR ( older brother). I am currently in my late 70’s but did have fibromyalgia in my late 40’s for about 5 years. I started on 15 g of prednisone in December and am down to 7 mg now. Struggling with fatigue, weight gain, increased thirst.
@eltje
Fatigue and increased thirst are symptoms of blood sugar issues. Make sure to keep tabs on your numbers.
-
Like -
Helpful -
Hug
2 ReactionsThanks. Will check it out with my Dr. this week.
-
Like -
Helpful -
Hug
1 Reaction