1. < Polymyalgia Rheumatica (PMR)

How often does PMR progress to GCA?

Posted by charlotte61 @charlotte61, Nov 11, 2023

I'm just wondering how many forum members here had their PMR progress to GCA? I did some research on the latter yesterday evening (perhaps unwisely) and scared myself half to death when I read about the risks of stroke, blindness, aneurysm, etc., associated with GCA. I also learned that the relatively low doses of prednisone we take for PMR won't do anything to prevent the development of GCA -- which was another shock. It seems the percentage of people with PMR who go on to develop GCA varies quite widely in the literature, so I wanted to know what your own experiences have been. I would like to do everything and anything I can to prevent GCA, but it looks like there's not really any way to prevent it -- it just happens in some people, sometimes without warning. How many of you experienced visual problems with your GCA? I have to say that blindness is one of my biggest fears, so reading about people who wake up one morning unable to see out of one or both eyes terrified me. To be frank, I'd rather be dead than blind. Just interested in hearing from those who are actually going through these diseases what your experiences have been with GCA and visual disturbances. Thanks! 🙂

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

isabelle7 | @isabelle7 | Mar 20 1:00pm
In reply to @elizadolittle "I'm glad I dropped in on these conversations. I take 5mg of prednisone for PMR. Lately,..." + (show)
@elizadolittle

I'm glad I dropped in on these conversations. I take 5mg of prednisone for PMR. Lately, I've been experiencing difficulties reading. The last time I had my eyes checked, it was determined that it was "dry eye" syndrome. Years ago, I had iritis and was on the verge of going blind when the doctors in Spokane diagnosed it. I was the second person that they had been able to stop going blind with cortisone. i don't have headaches, fever or any of the other symptoms mentioned. Even so, I think I'll schedule an appointment with my optometrist tomorrow. I am assuming GCA refers to glaucoma. Correct me if I am wrong.

Jump to this post

GCA is for Giant Cell Arteritis. I would highly recommend seeing a rheumatologist for vision change if you have PMR. My husband had PMR and later developed GCA. It’s a very serious condition. To diagnose it they checked his ESR and CRP blood levels for inflammation and scheduled a temporal biopsy which showed he had inflammation of his blood vessels. He was put on high dose prednisone which wasn’t working so we ended up in the ER where the ER doc put him on a very high dose of methylprednisolone (1200 mg) for three days. His inflammation finally started going down. We’re a month into it and his levels are normal. They have him on 80 mg prednisone splitting the dose 50 in the am and 30 in the pm. He just stated weekly Actemra injections which his doc says he’ll need 2-3 years. With the goal of greatly reducing his need for prednisone. Good luck! I hope you don’t have or get GCA. One more things. His PMR was under control. He had been diagnosed in May 2023. He was down to 12.5 mg prednisone and pain free. Then this February he started getting horrible headaches, jaw and scalp pain, his temples were sensitive and there were times his temples were inflamed. He lost his appetite and has lost weight through this process. He’s had multiple CT scans and labs done to rule out cancer.

REPLY
isabelle7 | @isabelle7 | Mar 20 1:13pm
In reply to @julie4868 "I had PMR for 6 weeks before I developed symptoms of GCA (temporal pain, swollen temporal..." + (show)
@julie4868

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.

Jump to this post

I’m so glad you pushed the issue with your doctor. My husband’s rheumatologist didn’t believe he had GCA even though he had PMR and all symptoms of GCA except vision loss. We weren’t about to wait around so I made call after call and was that squeaky wheel. Was able to finally get the doctor on the phone, while watching my husband going downhill very quickly. That’s when she said she didn’t think he had it. I pushed the issue hard and she finally (reluctantly) agreed to a temporal artery biopsy. Three days later we had an official GCA diagnosis. I knew immediately because the guy who did the biopsy said he saw inflammation in my husband’s artery. I called the doc again and she finally agreed to increase his prednisone. Unfortunately it wasn’t enough and we ended up in the ER with 3 days of 1200 mg of methylprednisolone IV infusions. I didn’t even know a person could take that much.

At the end of the day his doc who didn’t believe us now says he has the most severe case of GCA she’s seen. She thought he might have cancer and fortunately that has been ruled out.

We have an appointment with the chief of rheumatology. If we like her we’re changing doctors. His current one could have cost him his vision or even his life.

REPLY
isabelle7 | @isabelle7 | Mar 20 1:22pm
In reply to @julie4868 "Hi John, Thanks for your work with this forum. It’s a great resource for patients to..." + (show)
@julie4868

Hi John,
Thanks for your work with this forum. It’s a great resource for patients to connect with each other and learn from their experiences.
I am in my 4th year with GCA, on prednisone, and also Actemra since 12/22, and struggling with a relapse. I was thinking that the Actemra infusions would allow me to taper off the prednisone, got to 1.5 mg and had scalp tenderness, temporal pain and have had to go to 30 mg prednisone to relieve symptoms. So it’s pretty disappointing. This is the 3rd relapse I’ve had.
I am a retired medical lab scientist and stay educated on health issues, have read up on PMR/GCA extensively. Blogs like this one and especially Health Unlocked (I think that’s the one, in the UK) have been so helpful.
Thank you.

Jump to this post

I’m so sorry to hear you’ve had relapses. My husband was diagnosed with PMR in May 2023 and GCA in February 2024. He’s on prednisone (80 mg due to his case being severe and resistant to treatment initially) and also started Actemra injections this week. I’m really hoping he doesn’t get relapses because his GCA already landed him in the ER. This has been so frightening especially the day I saw his temples start swelling. I wish you the very best and hope this 3rd relapse will be your last.

REPLY
isabelle7 | @isabelle7 | Mar 20 1:25pm
In reply to @rashida "@charlotte61 My husband was diagnosed with PMR a few years ago and was put on a..." + (show)
@rashida

@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.

Jump to this post

Wow! I didn’t know a person could have GCA without symptoms.

REPLY
isabelle7 | @isabelle7 | Mar 20 1:33pm
In reply to @ninadavis "I had the same fear and canceled a trip out of the country because of fear..." + (show)
@ninadavis

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.

Jump to this post

That was not our experience. My husband developed PMR in May 2023 and was put on prednisone. While still on prednisone, a lowered dose (12.5 mg from 30 mg when first diagnosed) he developed jaw pain, headaches and neck pain, scalp tenderness, face swelling etc. In Feb 2023. His rheumatologist didn’t believe he had GCA. I had to push the issue to get a temporal artery biopsy which turned out to be positive. He has the worse case his doc has seen and is now on 80 mg prednisone per day and Actemra. He also landed in the ER where he got 3 IV infusions of very high doses of steroids.

REPLY
1 reply
isabelle7 | @isabelle7 | Mar 20 1:35pm
In reply to @charlotte61 "Thanks for your comments! My understanding was that the relatively low doses of prednisone we take..." + (show)
@charlotte61

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.

Jump to this post

I read your response and wanted to let you know my husband was on 12.5 mg prednisone for PMR when he developed a very severe case of GCA.

REPLY
1 reply
isabelle7 | @isabelle7 | Mar 20 1:40pm
In reply to @joybannister "Wow. I’m happy to hear you didn’t lose vision. If I am traveling and it comes..." + (show)
@joybannister

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.

Jump to this post

From our experience I would recommend at least 40 mg if you develop symptoms of GCA - headaches, jaw pain, tender temples, tender scalp, loss of appetite were my husband’s symptoms. He had to be put on 80 mg but he has a severe case. I’ve read 40-60 mg is what is typically given for GCA. Then you’d need to get a temporal artery biopsy to confirm a diagnosis of GCA. Hopefully you won’t get it.

REPLY
charlotte61 | @charlotte61 | Mar 20 1:45pm
In reply to @isabelle7 "I read your response and wanted to let you know my husband was on 12.5 mg..." + (show)
@isabelle7

I read your response and wanted to let you know my husband was on 12.5 mg prednisone for PMR when he developed a very severe case of GCA.

Jump to this post

I hope and pray I don't develop GCA, but it seems quite common in people who have PMR. At least I know what symptoms to watch out for. I don't have a rheumatologist but my GP asked me when I first saw him for my PMR symptoms if I was also having any headaches, so he must be aware of the possibility of GCA.

REPLY
1 reply
isabelle7 | @isabelle7 | Mar 20 1:56pm
In reply to @brazuca44usa "Hello @julie4868 I’ve been having all the GCA symptoms along with PMR. In July I went..." + (show)
@brazuca44usa

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?

Jump to this post

I know it’s been a while since your post but my advice to anyone with symptoms of Giant Cell Arteritis (GCA) go to an emergency room and let them know what you suspect you might have. If we’d known this we could have saved a lot of time and aggravation. In the end my husband ended up in the ER which is where we got the most tests taken and the best treatment. His rheumatologist didn’t want to believe he had it. Not sure why since he had all the symptoms other than vision issues.

REPLY
1 reply
ninadavis | @ninadavis | Mar 20 2:02pm
In reply to @isabelle7 "That was not our experience. My husband developed PMR in May 2023 and was put on..." + (show)
@isabelle7

That was not our experience. My husband developed PMR in May 2023 and was put on prednisone. While still on prednisone, a lowered dose (12.5 mg from 30 mg when first diagnosed) he developed jaw pain, headaches and neck pain, scalp tenderness, face swelling etc. In Feb 2023. His rheumatologist didn’t believe he had GCA. I had to push the issue to get a temporal artery biopsy which turned out to be positive. He has the worse case his doc has seen and is now on 80 mg prednisone per day and Actemra. He also landed in the ER where he got 3 IV infusions of very high doses of steroids.

Jump to this post

To isabelle7,
Wow, thankfully he had you as an advocate and I'd fire your rheumatologist ASAP. Thank you for letting us all know. I will be having a strong talk with mine.

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.