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

Good morning! I'm Kay and I was recently (last 2 months) diagnosed with PMR. I'm so glad to find this site. I'm on prednisone and taking Advil which helps with the pain. Every morning I usually end up taking my Advil first and then sitting in a chair with a heating pad. I try though to get up and move around instead of just sitting until the pain subsides. I'm so interested in hearing other stories and what others do to help themselves. They say this can last a few years. I find that there are some side affects from prednisone. I experience some sweating. It reminds me of hot flashes. I'm tired and just feel off. My nose runs as well at times. Do you experience this?

My stiffness has increased recently I went from 10 mg to 9 mg. Each morning I am really stiff in my upper legs left wrist and shoulder. I take my meds at 5 or 6 am so that by 11 am I am ok to do physical activity my crp level is 1.0 so that is fine. Should I feel this stiff each morning as my dosage gets lower. I started at 40 mg in June now tapering about 1 mg every weeks to a month. any thoughts

Hmm. Ibuprofen (like Advil) works best for me, but I've been advised (and read frequently) that we shouldn't take ibuprofen while taking prednisone. I still take it once in awhile if I'm experiencing a painful episode, but it's not good for the stomach. It shouldn't be taken daily. Maybe a split dose would help alleviate morning pain. (e.g. 15 mg. in the morning and 5 at night). That might be worth a try.

i am on my third flare of pmr in 15 months..i have never made it below 9mg of prednisone even with very slow tapers.. the more i read everyone's comments the more discouraged i become because i have yet to read about anyone who has bee cured..remissions yes but not for long periods of time..anyone out there that has totally resolved their 'disease'

Hmm. Ibuprofen (like Advil) works best for me, but I've been advised (and read frequently) that we shouldn't take ibuprofen while taking prednisone. I still take it once in awhile if I'm experiencing a painful episode, but it's not good for the stomach. It shouldn't be taken daily. Maybe a split dose would help alleviate morning pain. (e.g. 15 mg. in the morning and 5 at night). That might be worth a try.

It may be that people who have long remissions (cures?) don’t seek out a forum like this. My first remission lasted 12 years and I thought it was a one-time thing. After 12 years, it recurred. It seems like 3 flares in 15 months may be all part of the same occurrences. In my first time, I was on prednisone for 2 years. 12 years later, I got off prednisone in 10 months, but the PMR was back 6 months later and I think I reduced too quickly. I am now almost 2 years in and gradually reducing from 4 to 3 milligrams. I am not sure if I will end up eventually getting off prednisone this time or remain on a low dose. This seems to be a disease requiring patience.

Hi Kay,
Before I was diagnosed I was on 9 Advil a day just to get through the day. I would set my alarm at 3:00am to take my first dose so that I could get up to get ready for work. The pain was excruciating but the Advil helped. Once I was diagnosed, I started on Prednisone. 20 mg/ day for a month and then started my taper. That was a year ago Christmas. I am now on 6 mg/day and tried to reduce to 5mg/day but the pain came back so have prolonged the taper for now. It is upsetting to be on Prednisone for so long but continue to have hope for the future. I wish you well and continued success for a brighter future.

i am on my third flare of pmr in 15 months..i have never made it below 9mg of prednisone even with very slow tapers.. the more i read everyone's comments the more discouraged i become because i have yet to read about anyone who has bee cured..remissions yes but not for long periods of time..anyone out there that has totally resolved their 'disease'

It may be that people who have long remissions (cures?) don’t seek out a forum like this. My first remission lasted 12 years and I thought it was a one-time thing. After 12 years, it recurred. It seems like 3 flares in 15 months may be all part of the same occurrences. In my first time, I was on prednisone for 2 years. 12 years later, I got off prednisone in 10 months, but the PMR was back 6 months later and I think I reduced too quickly. I am now almost 2 years in and gradually reducing from 4 to 3 milligrams. I am not sure if I will end up eventually getting off prednisone this time or remain on a low dose. This seems to be a disease requiring patience.