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

I had a knee replacement and the nexr day an endoscomy because of a bleeding ulcer caused by a blood thinner. I was on 6 mgs pred. The following year I had another endoscomy on 7 mgs.

Hey Jeff. I had a colonoscopy in January 2020. It was discovered that I had diverticulitis so they put me on an antibiotic called Cipro. 4 days into a 7 day regimen I had my first flare up of PMR. Of course, we didn't know what it was at the time and it took 3 months to diagnose PMR. I guess we will never know if the Cipro started PMR. I had just finished my breast cancer treatments in December, so my resistance might have been low (I'm 78). I was not taking Prednisone at the time of my colonoscopy so don't know if this answers your question. Good luck.

panendoscopy should not interfere except that the laxative prep will probably wash out the oral dose of prednisone

Thank you all for your replies and @munchie pretty much what I thought. I don’t want to go backwards this early on the PMR road so will wait to speak with my gastroenterologist and GP and make my mind up after that. I am low risk so not overly concerned at the moment.

Got my 2nd Covid 19 vaccine today and no big reaction. Just a little sore arm and tired. All good after 1 day. Got the Pfizer one.

Ive had a relapse and dr advised to go back to dosage when I felt good. Im not sure if he means completely pain free or tolerable pain? What are others doing?

Hello @lobito3, Welcome to Connect. My PMR is in remission but when I was tapering off of prednisone and the pain flared up I always returned to the previous dosage. Also, each time I tapered down I would keep at the new dosage if the pain level was tolerable. My rheumatologist had me keep a daily log where I recorded my pain level from 0 to 10 and my dosage. Pain level is different for each of us but for me if mine was 0 to 2 or 3 I would stay the course and it would usually get better in a few days. This was tapering on a weekly basis. Hopefully some of our other members will share their experience with tapering and the pain levels also.

Can you share how long ago were you diagnosed with PMR and what your current dosage is now?

I am on my fourth tapering, coming down from 25 mg, I am now alternating 3 one day, four the next. For me, when tapering in the teens, when I got a relapse it hit me pretty hard and I had to go back up several mgs to recover. My RA doc was also adding methotrexate to my meds regimen telling me that would help me get off the prednisone sooner. Once I got under 10 mg the relapses became more tolerable, I could feel them coming. I would then stop tapering for a month or more until my body felt better. At my current level I feel some PMR in the morning in my hips and upper arms but that is largely gone by midday. For me, I just accept that there will be some pain on the Journey and that’s just the way it is. I am tapering very slowly now: 1/4 to 1/2 per month. My tapering journey is now 20 months old. If I were to get hit hard in a relapse I know I’d need to go back up. I’ll do that if I have to but I am trying to make gradual progress, accepting some degree of pain as part of the process. Of course our bodies are all different, as is our tolerance for pain. I wish you good luck with your process.

from all the blurbs i have been reading i am convinced that there is no 'norm' for tapering of steroids..it seems every individual is unique. what i find most unusual[as a doctor] is that the patients seem better informed than their rheumatologists regarding symptoms and tapering..i.e. my rheumatologist says fatigue is not typical of this disease[i beg to differ] and tapering is way slower than she has expressed

I agree and that's why this site is so important in providing information (especially to the frustrated!) and support. We can't expect our specialists to know everything.