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

I had little choice but to start my tapering without a rheumatologist as it’s taken me six months to get in to see one. The doctor (GP) was unsure and concerned about me being on prednisone for more than two months but with the information I brought in to her from the Mayo and her own checks she agreed with what I would be doing. Sometimes you don’t have a choice but to go it alone to some extent and need to be your own advocate regarding your health and research as much as you can to understand the disease.

Yeah I do understand. It took me months to even get a diagnosis. No one seemed to know what was wrong with me. Since then I've changed doctors twice, and I'm with a very bright young doc who is so helpful. She's been a gift to me. I was so sick that my husband wheeled me into an ER. By happenstance there was an older ER doc who had seen everything, and he looked at me, and said 'walk from your chair to the door.' And I did, and he said "I know exactly what is wrong with you." And he did. I had called my best friend about midnight, the night before, and I said "I'm so sick and I don't know what to do". She said that she would be at my house first thing in the morning. We began to come up with a plan, and while she was exiting my house she bumped into her phone and accidentally called her sister in law, who is a Maine Medical Center nurse. She explained what was going on with me, and this woman was someone who I also knew. She told my friend to have my husband drive to a particular Maine Medical Center ER, and tell them that I was having trouble with my legs and my arms, and to please check them. Whew! We went out, got into the car and drove to Portland that minute. That was the beginning of the long struggle, but it was the turning point for me to be diagnosed. I feel like I am on the road to regaining my old life, and it was a long road. I prefer to look ahead rather than back. I'm grateful for every day, and it's been hard, but such a learning experience! Don't give up. Fight with everything you've got. Ask questions, and make the professionals listen to you. That's why you hire them. It's 6 a.m. in the northeast and the heat wave is over. Enjoy the day. Don't waste it like I did. Try to find some good in everyday.

With respect to prednisone and over-the-counter medications, don’t forget that your pharmacist is a great resource. They know a lot about drug interactions or have tools to look it up.

In the meantime, I found this drug interaction tool from drugs.com.
https://www.drugs.com/drug-interactions/prednisone.html

That's pretty amazing. T U

This is very helpful. Thank you!

Has there been any connection between the J&J Covid vaccine and then getting PMR? I am a healthy 74 woman, exercise daily, eat close to Mediterranean diet. Had the shot April 3. I began to notice muscle soreness 4 weeks later, gradually becoming worse every morning, until intolerable.
My doctor diagnosed me with PMR on May 27, and started me on 10mg Prednisone, which has helped tremendously. Had a follow up on June 10, to continue meds until August. I take no other medications, just a D,B12, magnesium daily. Is there anyone else with a similar situation?

My rheumatologist said to taper as low as possible and still function. I now take 4mgs prednisone daily and feel pretty lousy most of the time but am able to do what needs to be done around the house and garden a little at a time. I have had PMR for two years plus and don't have a lot of faith that it will miraculously disappear but that would be nice.The side effects of prednisone scare me but without it I would be a couch potato so there's not much choice.

I’m thinking many things will be blamed on the shots but I have concerns myself. My last shot was April 8 and a month later was having fatigue and now (July) can’t walk without pain. GP says it looks like PMR so waiting on urgent referral list to see rheumatologist and long wait for my life has deteriorated immensely. The depression isn’t helping. You’re lucky you started on the prednisone so soon. I’ve read that calcium and vitamin D should be taken while on prednisone.

I was diagnosed with pmr 9years ago since then I have had a love hate relationship with prednisone. Initially the 60mg, honeymoon with prednisone was fantastic, pain gone, and euphoria. As time went by prednisone became mind altering and I was no longer my sweet self but a snarling harpy, with paranoia against my husband. Reducing the pred brought back the pain.
I did get off the pred eventually after 2 years, only to go back to a build up of pain over several years. I tried warm water therapy, which alleviates the pain but only whilst in the water, my husband bought me a hot tub to help. I still did not want to go back on prednisone.. I tried to cope with the pain. It became worse until at 68 I realized that my quality of life was dwindling, I had to crawl to get up stairs, I was using canes to walk and the pain was at times unbearable. Some times I had a good day and I could go out for a walk, but this became less and less.
I tried diet and found that sugary food irritated the pain.
I am now back on prednisone 15 mg for two weeks and have just reduced to 10 mg today. My weight went up quickly the first time that I was on 60mg prednisone,. After two weeks of 15mg the pain is manageable, I find that I have become an insomniac.Today the pain is a little worse with the drop down to 10mg.
I find that stress, and sugary foods make the pain worse. My husband has been going through cancer treatment, so our food has been healthy and made from scratch. Hopefully he is now cancer free and my stress and worry can subside. I prepare soups and stews, light oven air fry foods, or salads. It means that I am not cooking all the time. I make our own breads because I can control what I put in it. It looks as if I will be on the low dose of prednisone forever, but one can hope...............

Oh I'm so sorry, but I fully understand. It was awful when our local college swimming pool closed for Covid and I couldn't swim. Keep up the fantastic work that you are doing. Making your own bread! WOW. I am impressed. You are doing so many good things! I was on a great eating program for PMR and then my husband was diagnosed with Early Alzheimers. We were eating great food eventually, and just recently as I mastered that I was diagnosed with early kidney disease, so all of that went to hell. Now low phosphorus and low potassium. I have to learn a whole new way of cooking and eating. Life is hysterically funny. We could not write this script. I use humor as much as possible, because it is so interesting to figure all of this stuff out. I really don't mind dying. I could finally get a rest. Ha ha, but I want to be here to get my husband to the other side safely. He's 85 and I'm 84, and we had a wonderful life together. it is a second marriage for both of us, and we promised ourselves and each other, that it would be fun, and we'd be nice to each other, and it has been just as we said. We had a great time together, and still do, and I want to be there for him, as he has been for me. Sounds like you two are doing the same thing. Good for you.