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

I read a few months back that if we are on prednisone for pmr and we get the flu that we should temporarily increase the dose ie if at 10mg to go to 20mg for a few days until we are feeling better. I also wonder what to do If we get Covid. I would appreciate some insight on this. Thank you

Hi, I’m Karen Hope. I’m a nurse. Diagnosed with PMR 3 years ago. Probably had it 3 to 4 years prior when they were calling it fibromyalgia. Initial sed rate was 102, hsCRP-80. 2 months of Methotrexate brought all my numbers down but tripled my liver enzymes so I opted to discontinue along with the other side effects that terrified me. Next steps? I don’t know yet. But that relief from that pain was indescribable!!

Trying to control with diet but not doing so well. Just wanted to be in a group with people who understood

I have just been diagnosed with a severe case of hives. All the regular methods of stopping the itching have failed. My dermatologist suggested putting me on 60 mgs. of Prednisone on a 12 day taper. . I t has taken me a year and a half to get from 10 mgs. down to 3 mgs so this is the last thing I wanted to hear. I checked with my rheumatologist who said as much as she dislikes steroids to go ahead, and I should get back to the 3 mgs. without a problem. I'm just wondering if anyone else has had a problem with upping the dose to that high and being able t come back down without a problem. The dermatologist is aware I have PMR.

Hi Karen @karenhope, Welcome to Connect. Sorry to hear the Methotrexate had the bad side effects on your liver. My PMR is currently in remission but for both occurrences my rheumatologist started me on 20 mg prednisone. Took me 3 and half years to taper off the first time and I had a problem with weight gain. I was in remission for six years and it came back. My second time around only lasted 1 and half years before I was able to taper off. One of the biggest reasons I think it was easier the second time around was I changed my diet and lifestyle which sounds like you are already on your way with that.

@tsc, @alanbruce and others may have some information or suggestions to share with you.

Has your doctor or rheumatologist suggested any other treatment?

Greetings....First, let me say how much this blog has helped me already. I revised my 1-10 daily scale to make the ratings more meaningful in tracking my pain. Also, your posts have given me the courage to be more in charge of my dosage. I increased my dosage by 1mg and my pain is way better...almost gone. I'm trying to decide now if I should increase it another .5mg or a full 1mg. I'm at 17mg right now trying to deal with this flare up, which I now know was most likely caused by going from 20mg to 15mg overnight. No more of that! I'm wondering if anyone is taking krill oil supplements. I've been reading that it has greater benefits as an anti-inflammatory substance than fish oil. Evidently, it is absorbed by the body more easily. Does anyone have experience with krill oil? Thank you!!!

John and the other mentors were a great help during my 20 months going through the Prednisone tapering process that Mayo Clinic had put me on. It was a slow process but it worked. I worked with my dietician during that time but still gained about 16 pounds however I lost it within about 18 months. I exercised before, during tapering and ever since which was and is mainly walking and some weight bearing exercises. I see my rheumatologist three or four times a year and she always does a blood draw.
I have continued to follow the PMR group at Mayo and once in awhile I ask questions as new related issues come up.

He’s mentioned other meds but I’m not open to them right now

I’m Alex. I developed PMR symptoms after my first Covid vaccine. It gradually worsened and I was diagnosed with PMR about 7 months later. I began Prednisone and was immediately better. I am now down to 2 mg Prednisone daily with very mild symptoms. My delima is this. My PMR was so painful and debilitating that I don’t want to risk a flare. However, I am due a Covid booster. (My 2nd vaccine was last February.) Where can I find a specialist who knows enough about the vaccines and PMR to tell me which booster vaccine is least likely to cause my PMR flare? Or should I not take a booster? I would like a phone consultation so that I don’t have to travel and risk catching Covid.

I experienced a disabling flare of PMR within a few days after receiving the Pfizer vaccine. It was my second bout of PMR after a thirteen year remission. My rheumatologist prescribed prednisone which relieved the pain almost immediately and after several months of tapering I again achieved remission, only to be faced with a decision over whether to take a third booster dose. My rheumatologist encouraged me to proceed with the booster because he believed that due to my sensitivity to the vaccine I would likely have a severe case of covid with an adverse outcome if I did become infected. He opined it was safer for me to take the vaccine and then resume prednisone treatment if necessary. He further thought that it was entirely possible that my body had adjusted to the vaccine since I had been able to overcome the PMR. Acting on his advice, I went ahead with the vaccine and to my great relief the PMR did not recur. A few months after receiving the booster, I did test positive for Covid but it was a very mild case and I recovered quickly. Everyone's journey is different, however, and your experience may not be the same as mine. I wish you luck and hope you achieve remission soon.

Hi Alex, welcome. The American College of Rheumatology is recommending booster shots. See this discussion:
- PMR and Covid vaccine: Guidance from College of Rheumatology https://connect.mayoclinic.org/discussion/pmr-and-covid-vaccine-1/

In addition to @scpartain’s experience, you might also be interested in this discussion:
- Anyone with PMR have experience with 4th COVID vax jab? https://connect.mayoclinic.org/discussion/4th-covid-vax-jab/