How often does PMR progress to GCA?

@charlotte61 My husband was diagnosed with PMR a few years ago and was put on a course of Prednisone which was reduced gradually over eighteen months till it was stopped finally. Then he had to take Actonel for bone strength for a couple of years. His PMR seems to be in remission except for an attack in 2018 which fortunately lasted just one day, and the pain was less severe. He hasn’t had any more attacks..

Since then, he was diagnosed with GCA, but that was discovered by a random scan after a car accident we had. He didn’t - and still doesn’t - have any symptoms, but it is being watched by his doctor. He developed glaucoma about four years ago and I wonder if it is due to the GCA. Glaucoma too was discovered after a neglected eye exam. Glaucoma also accelerated his cataracts. Fortunately all these conditions were discovered by chance because other than his eyesight worsening, which we just thought was due to he fact that he has not seen his optometrist for a couple of years, the GCA would not have been discovered had he not gone into emergency after our car accident, and had the doctor on call not done a scan on him.

Sorry to hear your husband was diagnosed with GCA, but it's amazing that he doesn't have any symptoms. It makes me wonder how many others may have it without even realizing it. It seems that doctors don't really know a lot about either GCA or PMR, including what causes it, so I suppose it's possible there are all kind of asymptomatic cases out there that no one knows about. I'm glad your husband got over his PMR too!

I had the same fear and canceled a trip out of the country because of fear of getting GCA and being far from a hospital. When I last met with my Rheumatologist he told me that no one who is on prednisone for their PMR gets GCA. It only happens to undiagnosed PMR people. What a relief that was! He also said the reason to get to a hospital if you get the signs of GCA is to be able to see an opthamologist the same day. If you can see one on your own without going to the hospital that is what to do, that and take 40 mg of prednisone until you can see an opthamologist.

Thanks for your comments! My understanding was that the relatively low doses of prednisone we take for PMR wouldn't prevent GCA from developing, so it's reassuring that your rheumatologist says otherwise! Also good info about heading to see an opthamologist if GCA-related vision problems occur. I would have a much better chance of getting in to see my eye doctor promptly than getting to see anyone at the hospital, where I'd probably have to sit waiting for hours on end and then end up being misdiagnosed, which is what happened when I first went to ER for my PMR pain.

Wow. I’m happy to hear you didn’t lose vision. If I am traveling and it comes on suddenly (symptoms) would you recommend taking 40-60 mg pred until I can get to a doctor? I have PMR and want want to do a sailing trip in the BVI but worry about GCA hitting me suddenly.

That’s what I would do. Maybe pass that by your doctor. I always have extra prednisone with me when I travel in case of relapse symptoms.
Hope you have a great vacation!

I had PMR 2015 for about 2 years , weaned off Prednisone and I thought I was OK to get on with "normal" life.
I am now 80 . August 2022 , I developed really strange symptoms in my throat , jaws and tongue. I could not eat properly and my teeth seemed to be out of alignment. I consulted my dentist but she couldn't come up with an explanation.
Then about a week later, I suddenly had severe pain in my right eye socket and double vision. which lasted for about 10 mins. I contacted my GP [ doctor] and he told me to go to emergency dept. Can't remember why but I delayed for 24 hours . It happened again the next morning. This time I went to ED at my hospital where I was admitted straight away and given 3 daily infusions of 100mg prednisone. I also had surgery for a biopsy to be done on my temporal artery near the eye in question. it was positive for LGA [I am in Australia].
So , yes it was very sudden , no warning except for the jaw problems .
Now 16 months later I am being weaned off the prednisone [down to 6 mg] but I understand that I could regress any time. My eyesight is Ok but like you I am terrified when I think about the prospect of becoming blind even in. one eye.
To go back to 2015 when first diagnosed with PMR I was warned about LGA but I did not take it seriously enough.
I was lucky to have excellent and immediate treatment . My rheumatologist considers it serious enough to give me his mobile no. and insists that I present myself to hospital asap and for drs there to contact him immediately.

I was diagnosed with PMR and perhaps your Dr is correct about being on prednisone. I was taking the dreaded prednisone from Dec 2015 for about 2 years. Then I was declared ok due to blood tests being in normal range. BUT, August 2022 I developed LGA [GCA] . Perhaps my Dr should have ordered regular blood tests during that period between PMR and LGA .
So am sorry to cast doubt about for you with my experiences. Now I am still on prednisone[6mg] and have to live with possibility of reoccurrence of symptoms and even blindness. I should add that during this time of LGA I have had no symptoms of PMR but maybe the prednisone dose is hiding it.

@charlotte61 yes, that’s true! Just like my husband, many people get diagnosed by chance. If it hadn’t been for that car accident, he may never have had the scan which was performed for some other reason (which I don’t know). It just takes an observant imaging technician or doctor to spot something g that previously hasn’t caused symptoms.

I have fatty liver disease which too was discovered during an abdominal ultrasound by an observant technician. Same with my horse shoe kidney - it was an observant technician who noticed it and it had not been caught by a technician at an earlier ultrasound.

Hopefully, my husband’s PMR will remain in remission!

This is yet another reason I find this group so helpful. I will take what you wrote to my doctor and discuss it with him next visit. Thank you so much for sharing.