How often does PMR progress to GCA?

We're in the process of finding a new rheumatologist. We have an appointment with the Chief of Rheumatology (who helped us at a time when ours was being less than helpful.) If we like her, and I have no reason to believe we won't, we'll make the switch. We have to advocate for ourselves and our loved ones.

@charlotte61 In this case knowledge is power. Knowing the symptoms to look out for is so important. We had no idea when we started this PMR/GCA journey. Sites like this have been a lifesaver! Also, if you have PMR it is my strong recommendation that you also have a rheumatologist following your progress. Our GP's don't know nearly what the rheumatologists do. Having said that, our rheumatologist made some serious mistakes in my husband's case and we're meeting a new one next week. My strongest recommendation for anyone with PMR who develops classic GCA symptoms is to go straight to the ER and tell them what you suspect. They have the equipment to run tests quickly and to get you treatment right away. We learned this the very hard way and it could have cost my husband his vision or even his life. Turns out he's got a very severe case of GCA that was initially misdiagnosed as TMJ and stress headaches by our GP even though he already had PMR, and his rheumatologist didn't believe he had it. I had to yell and scream for her to order the biopsy which proved he had it. She's even admitted this is the worse case she's ever seen. No apology for putting him/us through a week of sheer hell.

I scared myself to death reading about GCA too!

My recommendation - don't read about it anymore.

If you have persistent headaches, tender scalp, and jaw pain, go to emergency.

I'd definitely be looking for a new rheumatologist! How could she not suspect GCA in your husband, given his symptoms and the fact he already had PMR? Sheer negligence on her part! I'm glad you persisted and got your husband the care he so obviously needed.

I don't have a rheumatologist. When I suggested it to my GP he said that a rheumatologist probably wouldn't be able to add anything more to what we already know (?!). Besides that, I live in a small town with no rheumatologists, so it would mean travelling to get to one and probably months on a waiting list to even get an appointment.

True-- the more I read about it, the more I terrified myself!

Please be very cautious about infection on the Actemra. I was on it for a year. A wonder drug that put my PMR into complete remission after 4 years. However it suppressed my immune system so significantly I contracted Influenza A, even though vaccinated, which went on into pneumonia, sepsis, Afib, pleural effusion and time in the ICU. Almost died.
Please be careful.
Best wishes for better health.

It saddens me to hear that people went through the same trauma as me. I too had two rheumatologists who ignored my signs of CGA (I had a sudde massive headache in the middle of the night and woke up later with locked jaw, etc.)! The symptoms hit me exactly the same time as covid hit my area in March, 2020. I couldn't see my PCP but he told me to take Tylenol, which i did until i was able to see him in person, at which point he did blood tests. So he suspected PMR, so put me on prednisone (to my much needed relief) and referred me to a rheumatologist. The rheumatologist thought I didn't have PMR so tapered me off the prednisone- big mistake. and keep in mind both my PCP and the rheumatologist didn't say anything about CGA. It's only after i began reading about the PMR that i realized i could have also had CGA. I found a new rheumatologist after two visits since i had no faith in the first one, and the new one also ignored my discussions about the massive headaches, until about my third visit when i persisted, so in september 2020 (6 months later) she had biopsy's done that came out positive for CGA - she immediately ordered other medications. To this day I think about what could have happened, but fortunately didn't. So please be persistent with you doctors and read these posts for good information.

Sorry you had to go through this, trafficjam! It appalls me how oblivious even rheumatologists seem to be about GCA, not to mention how few doctors actually listen to patients and take their concerns seriously. I'm glad you finally got the care and medications you needed!

Hi @charlotte61 and @nancy53, don't be to scared about GCA, but be on the alert for symptoms - scalp tenderness, difficulties seeing, stiff neck, headache, loss of appetite, dry cough, itchiness, problems chewing, fatigue, loss of appetite. Any symptoms like that merit immediate attention, especially disturbances in vision, as you noted @nancy53.
Both my mother-in-law I had it, diagnosed with biopsies of the temporal artery.
We received high doses of prednisone, tapered and went into remission, with no lingering problems.
I have osteoporosis but it was diagnosed before I went on prednisone.

Glad to hear you and your MIL got diagnosed promptly, and had no further problems after the prednisone. That's encouraging.