How often does PMR progress to GCA?

Thank you. I think it's the name alone that's so scary. Anytime I feel a slight headache I wonder if it is GCA. I'm not typically a hypochondriac, but PMR has me on edge.

I'm the same - every twinge in my head I think it must be GCA.

I understand. I lived with PMR and GCA for a year before diagnosis and appropriate meds.

I was freightened about that also, but I asked around and it does not occur that often.
Theresa

It seemed to me like it happens often, but I assume that's because the only people posting about it are those who have it. Those who got through PMR without ever developing GCA probably wouldn't be -- and that could amount to a lot of people, although I'm not sure.

@nancy53

I agree that we can scare ourselves with too much knowledge. However, I want to add one thing here. When my husband was diagnosed with PMR in 5/2023, I did tons of research and in that research GCA came up as a possibility in I think 20-25% of people with PMR. Not 100% sure on that number. I saw GCA could cause blindness and quit reading, hoping and praying he wouldn't get it. Then, when he developed the symptoms of GCA we didn't know what was happening at first. He started with a headache and some neck pain. The headaches became really bad and his doctor said they were stress headaches. Then he developed jaw pain and the doctor said he had TMJ. I doubted the doctor and that's when I put in a search "PMR jaw pain headaches" and up popped GCA. I contacted his rheumatologist (we've since switched rheumatologists) and she didn't believe me. I had to fight and fight for a biopsy. He had it, and it was horrible. He landed in the ER.

Long story short, good to know these few things, like you said:

If you have PMR and develop headaches, tender scalp, jaw pain, temple pain (any combo of those) go to the ER!!! That is the best advice.

@charlotte61 , @trina24 , @nancy53

I know having PMR and worrying about GCA is frightening. But in this case, knowledge is power. However, too much knowledge can freak us out and make us think any little thing we experience (headache, for example) means we're getting it. My husband had PMR then developed GCA. The things I would say to watch for is a severe headache that keeps coming back that is then followed by new symptoms, that can come on one at a time. Jaw pain, temple pain, trouble chewing, tender scalp, losing weight, and any change in vision especially blurry vision or feeling like a curtain is coming down over your eye.

I will share our mistake. He had all of these symptoms (except vision issues) that developed over a couple weeks. Our GP said he had TMJ and stress headaches, even knowing he had PMR. Our rheumatologist didn't seem concerned and said to take Tylenol for the headaches. I didn't believe either of them so I put his symptoms and PMR in a Google search and learned all about GCA. Our rheumatologist didn't believe me that he had it. I fought for a biopsy that showed he did. Things got so bad he ended up in the ER with large IV infusions of prednisolone.

I share this to say that if you develop several of these symptoms, or even a recurring bad headache, instead of going to your doctor head to the ER and tell them what you suspect. Insist they run tests and they will. They admitted my husband and he was able to get CT scans and MRIs done on the spot. We would have had to wait weeks if we went through the doctor. Even his doctor recommended going to the ER for that reason. So don't panic. Don't worry about it all the time. Just know what the symptoms are to look for and act on them if they develop. And hopefully they never will. You have an 80% change of NOT getting it.
I've researched this and found that:

About 1 in 5 (20%) of people with PMR will develop GCA
About 50% of people with GCA will have had PMR

This is a good link.
https://www.aafp.org/pubs/afp/issues/2013/1115/p676-s1.pdf
However, they failed to mention anyone on 2.5 mg prednisone or more for over three months should have a DEXA bone scan done and should monitor for osteoporosis.

My husband has PMR and developed GCA. He has been on prednisone for over a year and is still tapering with the help of Actemra injections (for GCA, FDA approved). He's finally down from 80 mg to 17.5.

It's taken a huge toll on his body and he has developed such bad osteoporosis that he's got three compression fractures (one from emptying the dishwasher, the other who knows) and can no longer bend at the waist (at all, no picking things up off the floor and so many other restrictions we don't think about) and can only lift things weighing 5 pounds or less. So it's serious.

I highly recommend anyone on prednisone to have a discussion with their rheumatologist and think about adding an endocrinologist to your list of doctors. We've found ours to be the best for dealing with bone issues. There are things that could have been done early on had we known this information. They could have given him meds to prevent the bone loss. But here we are.

@lmoross

Thank you for the warning. We are doing all we can to avoid infections. We still wear masks when we go into stores or are in crowded indoor settings. My husband is the one with PMR, GCA and now osteoporosis (which he developed taking prednisone) and when I travel I wear a mask on the plane and around anyone who might be sick. I'm extremely cautious not to bring something home to him. It's stressful and something we think about every day. It sounds like they're planning to keep him on Actemra for some time.

I am so sorry to hear what happened to you when you got the flu. That is horrifying!! I'm so glad you survived it and are here to warn others. Best wishes to you too!

Thanks for the info! What you had to go through with your husband to get a diagnosis of GCA is absolutely appalling! Not having doctors believe you is so aggravating, especially when it comes to something as serious as GCA.

I already had osteoporosis when I went on prednisone almost a year ago for PMR, but I am also taking a bone medication to help offset further bone thinning. Plus eating lots of calcium rich foods, and taking calcium and vitamin D supplements with added vitamin K and boron. I exercise every day, and attend Tai chi classes twice a week. I can only hope all this will help protect me from fractures. I'm currently on 10 mg of pred down from 15 mg, and can't seem to go much lower than that without a return of PMR symptoms. I'm seeing my doctor in a couple of weeks to touch base and see what direction to go in from here. I don't have a rheumatologist.

Exactly right. I went to emergency a couple of months ago when I had a bad headache out of an abundance of caution.

They wanted to give me morphine, which I declined. Thank God it wasn't GCA.