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

Oops, looks like my comment got cut off.

I was trying to say I’m not trying to be doomsday, but that especially if you find yourself having to wait things out, to be careful about monitoring for symptoms of GCA.

And I hope things work out and you get to connect with a rheumatologist sooner rather than later.

Hi @cakodra,
Please post about how it goes. If have to persuade your doctor to put you on a trial dosage of prednisone, you may want to stress how disabling the pain is. Undiagnosed, and feeling sore and stiff like the Tin Man in the Wizard of Oz, I tried to use a push down faucet at a sink in a public washroom and couldn't do it. The person beside me noticed and pushed it down for me.
The fatigue associated with PMR and GCA can be anemia - the anemia of chronic inflammation. That was one of my symptoms, but the prednisone corrected it.
I read about your blood pressure below.
I was on very high dosages of prednisone for a while. It did not effect my blood pressure.
Off it, my blood pressure was pretty low and doctor advised to eat more salt. My BP went up, still in a normal, good range, and I no longer feel dizzy when standing up.
Good luck,
Teri

Thank you, Teri. I will let you all know how this goes. I have increased my salt intake per my doctor’s instructions, and that’s what brought my systolic readings up to 80s/50s. Before that my readings were 70s/50s. I don’t think I can tolerate much more salt in my diet, and I drink lots of water, so this might be the best it will get for now. I’ve never had any dizziness despite the low readings. Just fatigue. Your encouragement and experience has been a great help! Take good care of yourself.

I appreciate your taking the time to come back to this. I’ve read quite a lot about PMR on the Mayo Clinic site, the Johns Hopkins site, and on the Arthritis Foundation site, and those readings brought me to GCA and the warning signs. I also have a friend who two years ago had GCA and did not act quickly enough. She has partial vision back in the affected eye, but it will never be normal again. She did not have PMR, but I know it can happen either way. Thanks again for caring and providing helpful information!

Thank you for this. I’ll need to check with my ANP first because I don’t know what rheumatology office she placed the referral with. I’m waiting for more information, but it hasn’t been long at all yet. I’m proactive; that’s not a problem. And I’m a former RN, which helps. It took 7 months a few years back to get my husband in with a neurologist for signs of Parkinson’s. I knew he had it long before he got diagnosed. It’s interesting that the literature tells you not to wait because early treatment can make a positive difference, but then you can’t get in with a specialist to receive that early treatment. Sometimes, like realty, it’s location, location, location.

This may be a little random, but I have POTS, which causes dizziness when changing positions because the autonomic nervous system can’t adjust as it should to pump blood up against gravity to my brain and upper body. Anyway, one of the main treatments is increasing salt and blood volume through hydration with fluids and electrolytes.

Just thought I’d mention it if it might make a difference. But sounds like you’ve got a good plan in place already. After trying many, many different kinds, I settled on the brand Kinderlyte. It’s marketed to children but it has the correct proportions for an oral rehydration solution without any artificial colors, flavors or sugar substitutes…as long as you don’t need to monitor your sugar. …And it tastes good!

I completely agree about how the literature states repeatedly early intervention is key…especially for neurology and rheumatology and ok, well, many things. But those two specialties in particular I feel like take the longest. Wishing you and your husband all the best.

Good morning, Quick recap on my PMR. Diagnosed in May 2023, started on 25 mg. Prednisone, then increased to 30mg. Symptoms (severe joint pain) miraculously went away. Tapering has been slow and I am now down to 10mg with Dr. saying to decrease 1mg per month. I have been on 10 mg for 2 1/2 weeks with no problems until yesterday when I started to feel very stiff all around my thighs. Woke up this AM with same symptoms, no progression to other body parts so far. I assume this is a flare, but is it a mini flare? Will it go away? Will it decrease? Will it increase to my former nightmare of pain? I am calling my rheumatologist today for advice. I would rather wait out the discomfort than increase my prednisone if I knew it was a temporary flare. I guess what I am asking the group is information about a sudden flare. Thank you for any advice or information about flares. Liz Ward

Hello! I have not been diagnosed by an MD. Two separate rheum work ups missed it although I had the symptoms and the positive labs. A friend sent me info on Pmr and I sent to my pcp. He will redo my labs and sed me in two weeks. The kicker was I was going to pt for my symptoms and finally saw a shoulder doc as pt was not helping and I could not do much with my arms. He gave me a shot of 80 mg and I woke up the next day almost completely normal. I had symptoms in my knees shoulders buttocks wrists and feet which began about 11 months ago. Debilitating. Before I got the Pmr info I had another 80 mg injection in the other shoulder as I still had some/guarding and restriction. I live in a medium sized city with not great healthcare options. I am about 45 minutes from Vanderbilt and want to go there. Should I see rheum again? What opinions on the doses I have already had that were 6 weeks apart? Thank you for any info. Thankful I found this group

Hi there- So sorry you’re going through this, and I hope you find answers soon. You’re not alone in going around the rheumatology spin cycle as I call it. I have a different inflammatory arthritis and something similar happened to me—months of PT while joint and tendon pain got much, much worse, several referrals, and multiple rheumatologists before I got the correct diagnosis.

The symptoms do sound like PMR, but there are many conditions that have similar symptoms. Typically it would be diagnosed with a combination of your symptoms, elevated labs (ESR and CRP, though confusingly these inflammatory markers aren’t always elevated), and if there’s uncertainty, a trial of oral prednisone.

Did you have steroid injections into your joints, or something else? That would temporarily help any type of inflammation. It’s non-specific, as it might improve PMR symptoms but also symptoms of other conditions as well.

The first line treatment for PMR is oral prednisone.

I think it would make sense to see a rheumatologist if you’re able—if you feel comfortable talking with those who you feel missed the diagnosis, you might still be able to talk to them about your suspicions about PMR. If so, it may be a shorter route to treatment, given how long waits can be for new patient appointments in rheumatology. But if you don’t feel comfortable, it may be better to get another opinion.

PCPs can treat PMR; it seems to vary depending on the PCP’s comfort level. I’m glad you can go to your PCP for support. But if there’s a possibility it could be something else, or if it is PMR but you have challenges with the prednisone or tapering it…that’s where you’d most want the expertise of a rheumatologist, if things start to go a little sideways.

It depends on what you’re comfortable with. I’d take the path of least resistance to treatment and then figure out where to go from there.

My dad’s PMR symptoms were absolutely debilitating. We pressed and pressed his PCP to consider the diagnosis and try prednisone. If he hadn’t prescribed it, we might have just taken him to the ER because we didn’t feel we could wait for a rheumatology appointment, but finally the PCP came through. We got with a rheumatologist as fast as we could though. All the best to you, and hoping you get answers soon!