On 15 mg pred to start for PMR, now down to 12.5. Pain has returned. I get facial hot flashes every night and I awake with a red hot face. I believe it’s prednisone related. Annoying.

Hi @bren2023, it's possible to have PMR without the inflammatory markers being high for a while. I also thought I had fibromyalgia. I was not diagnosed for a year. I did have PMR, then Giant Cell Arteritis and had to take 40 mg of prednisone to control it (blindness or stroke can result if GCA is not treated). I've been off prednisone about nine months.
When I had GCA I had a lot of head symptoms - a very stiff neck, a tender scalp, short stabbing pains from my ear to my nose. I developed an extreme sensitivity to sunlight and had a few episodes where I couldn't see out of my right eye. I also had a very itchy torso (no rash) for a couple of weeks..
The burning face and ears are odd. Be sure to mention them to the rheumatologist. If you have any problems with your eyes, it's best to go to the Emergency Room.
I wish you the best.

OMG they tested me Five times for LUPUS! Why is that usually a go to for doctors! I think you’ll find that most of us had to start with a higher dose of prednisone. I started at 40mg but I couldn’t walk. My legs felt like they were in asked in cement. I also did not fit the normal profile. Mine was totally in thighs, hips, lower back. Inflammation markers were off the charts though. I started pred in December and am now down to 12.5mg along with methotrexate. I have the sweats and sometimes, like you, feel hot. Are the hot flashes new since you started taking prednisone? Or did you have before?

Hi @bren2023 - So sorry you’re dealing with this and you’ve seen multiple doctors now who haven’t been supportive. Sadly, it happens too often, and we end up needing to be advocates for ourselves.

Just wanted to add along with the others who have said that it is possible to still have PMR without elevated inflammatory markers. It’s somewhat less common but definitely not unheard of. GCA, which occurs frequently with PMR often has “head” symptoms.

It’s great you’re feeling a better with the 15 mg prednisone, but it’s actually pretty common to start with a higher dose. I believe my dad started at 20 mg, and after an initial improvement his symptoms and inflammatory markers spiked and he was out on 30 mg. Higher doses are used for GCA or if it’s strongly suspected because it’s so much more dangerous (could lose your vision of higher risk of stroke).

Was one of your doctors a rheumatologist? If not, do you think you’d be able to consult with a rheumatologist? There are still dismissive and unsupportive rheumatologists out there but it may be less likely to find one, as they’re usually best positioned to diagnose PMR and/or fibromyalgia and/or lupus or distinguish it from other conditions that share similar symptoms.

I hope you feel better soon and find answers, despite all the challenges.

After my diagnosis in early May, my rheumatologist started me on 20 mg prednisone in the morning, tapering to 15 mg in the morning after that first week. I had a pattern of 2-3 good days followed by 2 awful days (needed my wife to help me out of bed, and I'm only 52) for about a week and half. After I complained that I was making no progress, my rheumatologist increased my dosage to 30 mg a day, splitting the dosage at 20 mg in the morning, 10 mg at night. I had almost instant improvement (little to no pain within a couple of days), and he kept me on that for 4 weeks. I started my taper to 17.5 mg in morning and 7.5 mg at night last Thursday, and aside from a couple of headaches, the symptoms have not returned. If I stay symptom-free for 2 weeks, I'll taper to 15 and 5, for 2 weeks , etc.. until hopefully I make it to zero sometime early next year.

Obviously my experience with this is still very limited, but 60 mg to the highest dosage I've ever heard of. I don't think I've seen mention of anything higher than 40 mg/day on this board. For me, splitting my daily dosage seemed to make a world of difference in my results. I haven't had morning pain since day 1 of the split dosage, about a month ago.

Another thing that I felt like I had to do (which is outside of my comfort zone; I'm generally shy) was call into my medical network's scheduling team every day, about 30 minutes after the lines open, to check for canceled appointments. I was initially scheduled for early July in late April, which I didn't think I could endure at the time, and got my initial rheumatologist appointment moved all the way up to May 9, after calling in every morning for about a week. I got lucky, but I'd not be shy about calling in case someone cancels in front of you, to get in earlier. Maybe you will get lucky too!

Best of luck! I hope the appointment in August (or earlier) gets you the treatment you need!