How often does PMR progress to GCA?

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 had PMR for 6 weeks before I developed symptoms of GCA (temporal pain, swollen temporal arteries, and jaw pain (claudication) with chewing or opening the mouth wide, which is due to inadequate blood flow to the muscles involved. The jaw pain was the worst, could not eat solid food. It even woke me up at night. These GCA symptoms came on quite suddenly, over the course of an hour or 2. From what I have read, having jaw pain increases the chance that vision loss may occur. I never experienced any transient vision loss.
My ESR and sed rate were within the normal range when I had them done 3 days later. (I was not on prednisone, never went on it for the PMR). I was sure I had GCA but my GP wasn’t quite on board due to the labs. I insisted on going on prednisone 40 mg, had a temporal artery biopsy 3 days later which was positive. Had to increase prednisone to 60mg after 5 days due to return of jaw pain.
I sure hope you won’t ever get GCA. If you have symptoms though, especially visual or jaw pain, don’t wait, get medical help as soon as possible. I was probably lucky to not lose vision. I applaud you for educating yourself on this. Patients need to be their own advocates! All the best to you.

Hello @julie4868 I’ve been having all the GCA symptoms along with PMR. In July I went to the ER with an extremely headache on the left side of my temple, very sore scalp, I was feeling very ill. They did blood work and a CT Scan. My sed rate and C-Reaction came back slightly over the normal range and the doctor said I had some inflammation in my body but nothing to be concerned. The headache got a little better until the end of September and still too this date. I’ve seen my PCP about 4 times since, she keeps saying that if it was GCA I would’ve lost my vision by now. Well, my vision has been blurry on and off, so I told her and she referred me to an ophthalmologist. Thank God, I have an appointment tomorrow to check my vision and have an appointment with a rheumatologist on Wednesday, Nov. 22nd. I just want to find out what’s wrong with me. My neck is very stiff, my upper back hurts, my scalp, my temples, jaw, when chewing even my tongue gets extremely fatigued. My head hurts just by touching the pillow. I’m very scared, especially that GCA can cause blindness but can’t wait to find out to get treated. Also, my eyes are getting extremely dry. Have you heard if eye dryness can be a sign of GCA?

Hello @julie4868 I’ve been having all the GCA symptoms along with PMR. In July I went to the ER with an extremely headache on the left side of my temple, very sore scalp, I was feeling very ill. They did blood work and a CT Scan. My sed rate and C-Reaction came back slightly over the normal range and the doctor said I had some inflammation in my body but nothing to be concerned. The headache got a little better until the end of September and still too this date. I’ve seen my PCP about 4 times since, she keeps saying that if it was GCA I would’ve lost my vision by now. Well, my vision has been blurry on and off, so I told her and she referred me to an ophthalmologist. Thank God, I have an appointment tomorrow to check my vision and have an appointment with a rheumatologist on Wednesday, Nov. 22nd. I just want to find out what’s wrong with me. My neck is very stiff, my upper back hurts, my scalp, my temples, jaw, when chewing even my tongue gets extremely fatigued. My head hurts just by touching the pillow. I’m very scared, especially that GCA can cause blindness but can’t wait to find out to get treated. Also, my eyes are getting extremely dry. Have you heard if eye dryness can be a sign of GCA?

@brazuca44usa please let us know what your opthalmologist and your rheumatologist say. It’s frustrating when doctors don’t take women’s symptoms seriously, eh!

Hello,
@rashida, I’m so disappointed because, I thought I was seeing an ophthalmologist but instead they scheduled me with an optometrist. I questioned them if an optometrist can detect any eye diseases and was told, yes. Per the optometrist, I’ve extremely dry eyes. I’ve been feeling a lot of pressure inside my ears today. Does PMR or GCA cause pressure inside the ears, do you know? I had a very weird symptoms last night. Both my knees got extremely red and so hot, it felt like I had a fever on my knees. What are your symptoms?

@brazuca44usa it is my husband with GCA. His glaucoma was detected by an optometrist, but he had the detailed test where they look at the back of your eyes, etc. Since nothing was seen with this exam, insist on seeing an opthalmologist and make sure when they make an appointment it is with the right eye doctor this time. I think everyone over fifty seems to have dry eyes - I do, too, and I use Hydrasense eye drops - they are cheaper at Costco.

My husband hasn’t experienced any of the symptoms you have been experiencing. Could you go to Emergency? You are more likely to get tests done there.

<p>Has anyone seen any research in how often GCA progresses to PMR?</p><p>Just diagnosed with GCA and wondering how often it progresses to PMR.</p>