Giant Cell Arteritis questions

Posted by alicoo @alicoo, Jul 27 6:11am

I have been diagnosed with Giant Cell Arteritis. I began Prednisone in January 2026 and Actemra in May. I have been reducing Prednisone and had gotten down to 10mg.
I have a few questions and need advice.
I began feeling bad again about 5 days ago, beginning with the headache. I now also feel weak and shaky. I had reduced down to 10mg prednisone and was planning to go down to 9 but on Saturday I felt pretty bad and had very blurry vision, which scared me a little. So I have gone back up to 15. Vision is better but still have a headache and weakness.
So my questions are: Am I still at risk for blindness even though I am on Prednisone and Actemra? Should I increase the prednisone further? Is it normal to have these symptoms while reducing prednisone? What should I be doing?
Thanks,

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pmrsuzie | @pmrsuzie | 2 days ago

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.

maddboat02 | @maddboat02 | 1 day ago

In reply to @rpr13 "@maddboat02 Can you clarify which labs stabilized for you?" + (show)

@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.

tweet | @tweet | 1 day ago

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.

gailcha | @gailcha | 8 hours ago

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.

sandiw77 | @sandiw77 | 5 hours ago

In reply to @tweet "Has anyone experience chest pain being on prednisone? I have PMR and GCA and every time..." + (show)

@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! ❤️

tweet | @tweet | 3 hours ago

In reply to @sandiw77 "@tweet, I am so sorry to hear that you are having chest pains. I hope you..." + (show)

@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.