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

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.

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.

I'm still waiting for a diagnosis of PMR or fibromyalgia or something else. I am 81, female, northern Europe ancestry.
I don't run to drs with every ache and pain so when I began having pain in my hips that made it hard to walk but once I started walking it eased up a bit. I basically ignored it saying "oh, it's just bursitis, it will go away" but it didn't , then came the pain in arms,shoulders neck and back of head, so after 5 months and getting worse I went to a doctor near me.
She said it sounds like PMR and sent me for blood tests. Tests did not show the right markers so she just told me it's not PMR and had no further comments. In telling her all my symptoms, she looked at me like I have 3 heads.
So, I went to another doctor who I don't trust either. He suggested Lupus and ordered the tests which did show positive ana and high anti , however I have none of the symptoms of Lupus and at my age the likelihood is remote.
I read a lot, everything I can find and my symptoms also suggest fibromyalgia as well as polymyalgia.
I told him this and he said "Nonsense" fibromyalgia is a made up disease doctors use when they don't know.
He referred me to a rheumatologist with whom I have an appointment in August.
Meanwhile, he prescribed 60 mg a day of prednisone for 14 days! No way in xxxx am I taking 60 mg a day of prednisone, not even for one day. I will take 15 mg for a few days and see if it helps.
One symptom that I can't find the answer to is severe hot flashes that are limited to my face and ears. My face burns but does not feel hot to the touch. I have to keep the room very cool and use fans.
I am anxious to learn what I am dealing with.

I'm still waiting for a diagnosis of PMR or fibromyalgia or something else. I am 81, female, northern Europe ancestry.
I don't run to drs with every ache and pain so when I began having pain in my hips that made it hard to walk but once I started walking it eased up a bit. I basically ignored it saying "oh, it's just bursitis, it will go away" but it didn't , then came the pain in arms,shoulders neck and back of head, so after 5 months and getting worse I went to a doctor near me.
She said it sounds like PMR and sent me for blood tests. Tests did not show the right markers so she just told me it's not PMR and had no further comments. In telling her all my symptoms, she looked at me like I have 3 heads.
So, I went to another doctor who I don't trust either. He suggested Lupus and ordered the tests which did show positive ana and high anti , however I have none of the symptoms of Lupus and at my age the likelihood is remote.
I read a lot, everything I can find and my symptoms also suggest fibromyalgia as well as polymyalgia.
I told him this and he said "Nonsense" fibromyalgia is a made up disease doctors use when they don't know.
He referred me to a rheumatologist with whom I have an appointment in August.
Meanwhile, he prescribed 60 mg a day of prednisone for 14 days! No way in xxxx am I taking 60 mg a day of prednisone, not even for one day. I will take 15 mg for a few days and see if it helps.
One symptom that I can't find the answer to is severe hot flashes that are limited to my face and ears. My face burns but does not feel hot to the touch. I have to keep the room very cool and use fans.
I am anxious to learn what I am dealing with.

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?

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.

NO, the hot flashes started at the same time as the muscle pain. If the room is not cold enough, I feel like I feel like it is hot sun on my face and I'm in Arizona (109 today)
I had my 5th covid vaccine (the Omicron) in December and this started in January. Maybe a coincidence. Dr thinks there is a connection to vaccines.
My legs are heavy too and painful to walk but after 2 days on 15 mg pred, I already feel some relief in my muscles but the hot face is still here. It may be something different from pmr. I just don't know.

I'm still waiting for a diagnosis of PMR or fibromyalgia or something else. I am 81, female, northern Europe ancestry.
I don't run to drs with every ache and pain so when I began having pain in my hips that made it hard to walk but once I started walking it eased up a bit. I basically ignored it saying "oh, it's just bursitis, it will go away" but it didn't , then came the pain in arms,shoulders neck and back of head, so after 5 months and getting worse I went to a doctor near me.
She said it sounds like PMR and sent me for blood tests. Tests did not show the right markers so she just told me it's not PMR and had no further comments. In telling her all my symptoms, she looked at me like I have 3 heads.
So, I went to another doctor who I don't trust either. He suggested Lupus and ordered the tests which did show positive ana and high anti , however I have none of the symptoms of Lupus and at my age the likelihood is remote.
I read a lot, everything I can find and my symptoms also suggest fibromyalgia as well as polymyalgia.
I told him this and he said "Nonsense" fibromyalgia is a made up disease doctors use when they don't know.
He referred me to a rheumatologist with whom I have an appointment in August.
Meanwhile, he prescribed 60 mg a day of prednisone for 14 days! No way in xxxx am I taking 60 mg a day of prednisone, not even for one day. I will take 15 mg for a few days and see if it helps.
One symptom that I can't find the answer to is severe hot flashes that are limited to my face and ears. My face burns but does not feel hot to the touch. I have to keep the room very cool and use fans.
I am anxious to learn what I am dealing with.

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.