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

I came to this site because I have no support whatsoever while dealing with Polymyalgia. Other than what I was told on the Mayo Clinic site, and taking the Prednisone prescribed, I have wondered if I am the only one out there. Reading a few of the comments here, I already know many people are dealing with PR. I was told to go on the AIP protocol diet, which is very restrictive. I tried it, but could not find half the foods it suggested that I eat. Now I read that the Mediterranean Diet is the best for people with auto-immune diseases. I know that tomatoes and potatoes can send me into pain. So now it is the Mediterranean Diet with restrictions. I have come down from 40 mg of Prednisone to 6 mg in 15 months, with occasional flare-ups. As I start this 6mg schedule for the next 6 weeks, I am praying that all will go well. I will keep checking this site for encouragement.

Hi @canpr, Welcome to Mayo Clinic Connect. I can't imagine dealing with PMR with no support. That takes me back to when I first experienced PMR and finally was sent to a rheumatologist who diagnosed me. My wife had to drive me to the appointment in the morning and I had a follow up the same day in the afternoon. We picked up the prednisone after the morning appointment and I took my first 20 mg tablet and was feeling no pain by the time I went to my afternoon follow up. I didn't start looking at diet to help with my autoimmune conditions until after I was diagnosed with small fiber peripheral neuropathy in 2016. That led me to doing some research on nutrition to help with my autoimmune condition after reading Dr. Terry Wahls book The Wahls Protocol.

I pretty much cut out all fast foods, most processed foods and sugar which I still have not totally eliminated. I found the following article which helped me do a little better planning on what I can eat and what I should avoid.
What to eat if you have polymyalgia rheumatica: https://www.medicalnewstoday.com/articles/321683

You are doing great tapering off of prednisone. I was never any higher than 20 mg for both occurrences of PMR but each of us are different. One of the things that helped me taper off of prednisone was keeping a daily pain/dosage log, recording how I felt with the pain from a 1 to 10 along with the dosage of prednisone. This also helped me when I had a second round with PMR. If you haven't already requested that your doctor prescribe 2.5 mg tablets and 1 mg tablets, I would discuss it with your rheumatologist or doctor. It makes it much easier to go down slower in dosage.

Did your doctor give you any suggestions for a tapering schedule?

The doc who diagnosed me spent most of 2020 trying to find a reduction schedule that worked for me. After several flare-ups followed by increased Prednisone, we found that reducing 1 mg every six weeks worked for my body. I was never referred to a rheumatologist. I have moved, and will see my new doc in May. I will insist on keeping this reduction schedule but will ask for a referral.

Did the doctor who diagnosed you ever mention or ask if you have any pain in your temples or tenderness in your scalp? Just mentioning that because it was one of the questions my rheumatologist asked me along with my primary care doctor when I was discussing my pain symptoms from PMR. Pain in the temple area, jaw pain and scalp tenderness are symptoms of another condition that is seen with PMR called giant cell arteritis (GCA). When you meet your new doc in May you might want to make a list of any questions you may have and take the list with you to the appointment. I always have to write stuff down to make sure I don't forget to ask at my appointments 🙂

Thank you for the head's up. I was never told about these possible symptoms, which a rheumatologist may have mentioned. I will bring it up at my appointment.

Hello @canpr and welcome to Mayo Clinic Connect. Thank you for sharing your journey with finding a diet that improves your health and your Polymyalgia. I am sure there are members that will benefit greatly from your journey and your updates. Will you come back and update regularly?

The AIP protocol served to get me out of my usual diet, which is what caused inflammation in my body in the first place. I bought 2 books and did my best to stay on it and study it. It taught me about foods I had to look up on Google before trying them out. If done properly, the protocol is meant to rid the body of the foods that are toxic for people with PR. After a determined period, foods are slowly re- introduced. The reaction can be fast. The next morning after eating tomatoes, I struggle to lift myself off the toilet. My doc knew NOTHING about the link between foods I ate and the inflammation in my body. Does your doc know?

Your description of physical distress sounds a lot like mine. I was diagnosed with PMR after 4 months of pain, stiffness and fatigue (PMR can give you anemia). I too was an active person and initially thought my pain was due to strenuous exercise, but not the case. It got worse and finally moved to my shoulders and upper arms; then I got a diagnosis.
I too felt worse after resting, couldn't get comfortable no matter what I did and went up and down stairs with great difficulty, one step at a time. Odd bodily things came with it: for a while I had to pee every hour on the hour at night, struggling to get out of bed and use a female urinal because I couldn't make it to the bathroom. The fatigue was extreme. Bowels were loose and barely made it. It was all from PMR and I doubt if the docs could even say why.
I am on 10 mg of prednisone now and feel 95% like my old self. It keeps improving and I am hopeful of getting over this thing!
If you do go on prednisone keep an eye on your bones. If you are anywhere near osteoporosis talk to your doc about bone drugs. Best of luck and good health wishes to you.

Hello @monami, Welcome to Mayo Clinic Connect, a welcoming online community where patients and caregivers share their experiences, find support and exchange information with others. Thank you for sharing your experience with PMR. I'm glad to you are doing OK controlling the PMR with 10 mg of prednisone. It sounds really good that you are down to 10 mg. How long ago were you diagnosed with PMR?

In reply to @johnbishop. Hi there John and all, in answer to your question - I managed to get off prednisone but the last 1mg took me quite a while. I am not pain free, still very stiff if I sit for too long and have days when my body aches but it is managable. Blood test do not show any increase in inflammation on my last test 4 months ago so fingers crossed the remission will last. In New Zealand we do not have the vaccine available for everyday people, the frontline border staff and others that are in contact with overseas people are being vaccinated first. I have just been informed that the flu vaccine is available for this year but no update on the Covid one.
We are blessed in New Zealand in that Covid is under control and we can freely move within our country unlike the majority of other countries. I wish everyone good health for today and the coming months, lets hope that Covid will eventually be under control and we can get back to our new normal, whatever that may be.