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

I am getting so frustrated. I have now seen 3 primary care doctors and one rheumatologist. I've had possible diagnoses of either PMR or fibromyalgia
None of the 4 can tell me why I have scalp pain, pink scalp and very sore, itchy scalp. None can tell me why I have constant hot flashes.
I can't take prednisone. It makes my irregular heart beat go crazy, Cymbalta made me drugged and unable to function all day.
I have been on an anti inflammatory diet for months and now and am trying keto.
Most of my symptoms have improved a little with diet and supplements but I have a long way to go.

I was recently diagnosed with
PMR and received a prescription of 5mg prednisone to be taken daily.
I’m 75 yrs old and have been reluctant to start the meds. I’m always concerned about side affects. I’ve alway tried to take natural remedies but due to pain and this diagnosis I’m thinking I may have to take the prednisone. I’m glad I found this support group and I’m hoping to find the best solution for myself by hearing others experiences.

79 here. Have osteoporosis, but didn't see any real choice because the PMR could get worse, and I was in a lot of pain. Was also afraid of Giant Cell Whatever. Started with 15mg end June, which was increased to 25mg after a week because change was minimal. A few days after that, improvement was very noticeable. Now I'm down to 10mg, entirely functional and almost without discomfort other than minor shoulder and arm aches. Most of the day, I don't think about having PMR. Now I mow the lawn vs. the earlier time when it was a struggle to put on clothes.

Are you only supposed to take 5mg as your starting dosage?

Yes the Dr said 5mg to start
I appreciate your feedback.
It helps to hear success stories especially from someone close to my age.
Thank you for your response. It was helpful and I appreciate it.

I just received a call today from my doctor regarding my bilateral temporal arteritis biopsy results. "Least Likely" that I have Giant Cell Arteritis. Strange wording for my results, but I'll take it.

I have a question for anyone out there that has either a history of GERD or started having reflux issues because of their PMR. I was diagnosed with GERD/Reflux 25 years ago. I would have flare-ups, I'd see my GI doctor, went for Upper GI, I was treated, and it resolved. However, I went to my GI doctor 3 months ago when my symptoms flared up, and she scheduled me for an upper GI in October, OMG! I'm on Omeprazole, however, it is not stopping my symptoms like it use to.
MY QUESTION IS: Can PMR cause GI flare-ups of GERD? My symptoms seem more intense since my PMR symptoms started.

HERE ARE MY CURRENT SYMPTOMS - NO QUESTION THAT I HAVE GERD:
Acid Reflux/backwash 3+ days a week
Burning in throat, esophagus, and stomach
Throat swollen
Laryngitis/change in voice often
Skin peeling in mouth; lips and mouth burning
Difficulty Swallowing (also during recent PET Scan throat felt like it closed 3 times)
Substantial increase in swallowing
Burping at times
Chronic cough with bouts lasting for hour - has been going on for years since I started with having symptoms of PMR
2 Granulomas in left lung - benign
Nausea
Anxiety/grinding teeth from continuous burning and coughing

Please let me know if there is any correlation between PMR & GERD. Any feedback or info would be soooo helpful!

It took over 4 months to diagnose my PMR. I could barely walk. I was so sedentary and in bed for extended periods of time. I even developed a decubitus on my back side. My rheumatologist missed my PMR. It was my PCP who diagnosed my PMR and started me on 15 mg of prednisone a day. Within 36 hours, my pain was reduced by 90%. I took it for 4 months, than began a slow taper off of it. That was 3 years ago. I have not had any signs or symptoms of PMR since then.

The prednisone was not fun, and I developed a ‘double’ colon infection which required a 3 day hospitalization. Even with that, the prednisone was so very helpful and worth the side effects.

I hope you are able to get your PMR under control quickly.

Hi Fam, I was recently diagnosed (May 2023) and am/was a very healthy 76 year old. I too was reluctant to take medication (prednisone) but the pain was so unbearable and limiting I had no choice. I started at 30 mg with a slow taper. Fast forward and now I am at 8 mg. I have experienced no pain or flares and can almost forget I have PMR…haha. I see my rheumatologist once every 6 weeks and get blood work done for that visit. Her goal is to reduce prednisone to 0 mg. I am tapering 1 mg per month. We shall see. Because of the possible side effects of prednisone I am taking calcium, vit D, vit K, pepcid and fozamax. So far I haven’t noticed side effects. Am also following a modified Mediterranean Diet with little or no salt or sugar. Good Luck and have patience. Liz Ward

Hi Liz thanks for your feedback. I’m so glad you are getting back to health.
I too try to eat healthy low salt low sugar and lots of fruits veggies along with lean meat and fish.
I have been underweight for years and have a hard time gaining weight. I’ve read prednisone can make you gain weight. Did you find that to be true?

Hi isc PMR also took months to diagnose for me. It’s good to hear the prednisone worked for you. Sorry you had that side affect. That is my concern with taking it but since you are now feeling better and think it was worth it
it seems like it’s worked out good. Thanks for sharing.

Hi @isc, I would like to add my welcome to Connect along with @fam8284 and others. So glad to hear you got your PMR under control. It sounds like my first go around with PMR back in 2007. It also took me about 3 and half years to taper off of prednisone and I stayed in remission for about 6 years until it reared it's ugly head again. My second time around took me 1 and half years to taper off thanks to learning how to better manage the PMR and tapering here on Connect. I've been in remission now for about 5 years and hoping it doesn't come back.

Did you make any lifestyle changes after your PMR symptoms went away?