Giant Cell Arteritis questions

I have not been diagnosed with GCA but it's always on my mind. I realize everyone is different. Weight gain is a problem, more for some than others. I gained 5 lbs in the beginning, 7 years ago and recently got back to the weight when I was first diagnosed with pmr . There are a few things I have done to help minimize weight gain. 'They' say to cut back on salt. Because I also have Meniere's Disease I have drastically cut back on salt. I constantly read food labels and my rule of thumb is to avoid anything with more than 200mg sodium. I get weighed every morning to see where I'm at day to day. Using a smaller plate at dinner = smaller portions. Eat slower, take smaller bites. Take time to enjoy your dinner. I'm not a dietician, not being judgmental, just making a few suggestions that might help someone.

@rpr13
Sed rate & CRP but I never experienced “text book” symptoms before diagnosed. Only biopsy of both sides of temporal regions is true diagnosis. I might add that I was never diagnosed with PMR and lab work was negative for PMR as well.

Has anyone experience chest pain being on prednisone? I have PMR and GCA and every time I take prednisone I get chest pains and of course gained 20 pounds. I also get headaches and insomnia. I’m waiting for actemra . I’m taking rinvoq as of now but it does not treat my PMR. So doctor changed it to Actemra. On tapering phase at 5 mg of prednisone. I have 5 more days left. I walk a mile and half 5 days a week eat 95% healthy and still gained 20 pounds.

Best wishes to everyone with this disease.

I too am on prednisone and Actrema for GCA - diagnosed March 2026. Was titrating down on prednisone - got to 10 mg but temporal and jaw pain returned. Both ophthalmologist and PCP told me to go back to 20 mg. So yes evidently if not in remission, eyesight remains a concern.

@tweet, I am so sorry to hear that you are having chest pains. I hope you have mentioned that to your doctor so that you can be appropriately evaluated. Is it possible that the Rinvoq could be causing the chest pain? I understand that chest pain can be a side effect from that medication. I had the same issue with weight gain from Prednisone despite even reducing my caloric intake, but I think that is one of the reasons they want to get us off of it as quickly as possible. Praying that you get some relief from Actemra! ❤️

@sandiw77 Thank you! I did mention it to doctor. He referred me to a heart specialist. I am in the middle of getting all those test done from doctor. I have high cholesterol and my doctor told me it could be from inflammation and or family. I told the doctor I don’t know why I have high cholesterol because I mainly eat fruits and yogurt and cottage cheese. Lol Then a nice dinner. He said inflammation can cause it.

I know we have to starve ourselves lol on prednisone and probably would still gain which some is water retention.

Are you taking prednisone for GCA.? Anyway,it could be the Rinvoq or clogged arteries which is what they are checking on now. I’m 64 . I told my husband the adverse effects from the Covid vaccine is what is going to kill me.

Take care of yourself. Hope you are doing fine.

@tweet, yes—I take Prednisone for GCA/PMR. My hip/shoulder pain and CRP/Sed Rates were all pretty intense and every time they attempted to lower my Prednisone, my inflammatory markers went back up. It was extremely frustrating but my rheumatologist suggested that I could have GCA. The surgeon he referred me to to confirm it thought I had been on Prednisone too long to say for sure so he didn’t do the biopsy. We didn’t realize it at the time but I had actually had 2 mini strokes and changes in my vision so I am very thankful that my rheumatologist persisted and treated me with Actemra. Actemra has helped with the pain (though I have degenerative disc disease and deal with daily pain) but my headaches did get substantially better.

Please keep us posted on your test results and I will be praying you get all the. right treatment. Take care! ❤️

@tweet When I was on a high dose of Prednisone (50 mg.) I had chest pains. It felt like an elephant sitting on my chest. I had an echocardiogram and it showed that everything was normal with my heart. The chest pains were one of many side effects I had from the Prednisone. They eventually went away, as I tapered my dose down.

@sandiw77 Oh boy. That’s a lot going on for you. I have every thing you have. I’m glad to hear the Actemra is working for you.

It is frustrating with inflammation markers go up and being on prednisone for a long time. And the thought of knowing you can go blind.

Two mini strokes and you didn’t know except for your vision? Have you been to the heart doctor? That’s scary too..

I never heard of PMR until the doctor told me that’s what I have and can lead to GCA and it did.

Take care of yourself! ❤️ Be 💪 strong…. As hard as it may be. More times than not.

@ropnrose yes!! It does feel like an elephant sitting on it. It comes and goes but doesn’t last long. I was on 60 mg when I was having the GCA systems. This is my third gonaround with prednisone and I thought this just could be the prednisone because my chest hurt like this before while being on it. This time my Dr said let’s get your heart checked . Glad he referred me to a heart Dr . I’m just now in the process of getting the stress test and tomorrow I go for a calcium scan.

Does everyone suffer from high cholesterol that have this disease of PMR and or GCA?

Hope you are doing well. 🙏 Thank you