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

You sound a bit like me. I tried methotrexate and threw up everyday. Leflunomide caused a horrible rash that itched so bad I couldn’t stand it. Lasted six weeks. Started Actemra a month ago. My second infusion is next week. No difference yet, but have been told it may take 2-3 months.
I am only taking 2 mg of prednisone per day. It does nothing to help, but I don’t want to go up as I have been on it for 4 years.
Also dealing with long Covid after a break through infection a year ago. No sense of smell. Exacerbated fatigue and other strange things happening to my body.
So tired of this. Some people look at me and say “you don’t look sick”. They can’t see the invisible pain and fatigue inside.
So afraid this is my future life.

I have PMR my is very painful,the last 2 nite I am unable to sleep because I have bad headaches all nite long I was wondering If anyone has that problem

I felt better between 8-10 mg of Prednisone. I was on 20 mg for several months before I started tapering down. Last week I went from 6mg & 7mg on alternate days down to 5 mg. I feel a big difference. I am also taking 200mg Hydroxychloroquine. I am not getting pain relief but I have only been on it for five days.

JABrown0407, your mention of the trochantor bursitis came at a informative time for me. I recently saw my PA for my hip replacement surgeon and he located a very tender spot on my outer hip that was no doubt what you described. Now my other hip is also complaining. I have already started icing both areas and limiting activity out of necessity. I hope that the stifness I experience in my legs will dwindle if I treat the bursitis properly. Boy, bodies sure are complicated! (On the plus side, my xrays looked good.)

Hi @kanedenmk, have you been screened for Giant Cell Arteritis, a companion disorder of PMR? Some of the symptoms are terrible headache, trouble seeing, jaw pain, tender scalp. If left untreated it can cause blindness or stroke. About 30% of those with PMR develop GCA.

Sorry to hear of your struggles. I did not have the negative reactions you experienced to methotrexate and leflunomide but also no positive results. Thanks on the info on how long actemra should take to get positive results. I did my first injection yesterday and will do it weekly. I do hope have you have positive results.

I also have tender hip spots that limit my ability to sleep on my side and activity. Thank you for the helpful information. Best wishes.

I have appreciated the trochanter bursitis discussion. In September I will be two years out from my Dx, on August 15th, 2021 I took my last prednisone medication. The only remaining symptom is the bilateral trochanter bursitis. My doctor said my labs are good and I’m over PMR, but the pain is so annoying. I can not sleep on either side. It is so difficult to sleep on my back all night. I take no medication for pain, continue to walk 10,000 steps a day, ironically the pain does lessen a little, if I exercise regularly. Thank you for this website and the ability to see other peoples experience, it means so much.

@sue16833 Please talk to your Rheumy about getting steroid hip injections. If your Rheumy is not willing to help out please see an Ortho. I self-diagnosed the bursitis then at the request of my PCP went to my Ortho to confirm. My Ortho gave me my first round of hip injections then depended on my Rheumy. My Ortho specializes in shoulders and knees, or you can see a hip specialist or possibly a generalist, just go if still having hip pain.
A word of caution. Over time steroid injections become less effective and they do have some side effects a little different than oral steroids. The injections provide great relief and I have been known to time them to my social/travel plans.

I'd like to share something that helped my trochanter bursitis. I was seeing a physical therapist for another issue and told him about the pain in my hip. He had me lay on my "good" side and do leg lifts with the "bad" leg. I probably did 10 reps there and I continued at home. The pain subsided then ended. Every body is different but this worked for me.