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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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ropnrose | @ropnrose | 1 day ago

I have high cholesterol. Not horrible, but higher than the standard. With all my other issues (inflammatory arthritis and osteoarthritis), I feel that it's the least of my problems.

Let us know how your stress test works out.

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villager | @villager | 17 hours ago
In reply to @ropnrose "@tweet When I was on a high dose of Prednisone (50 mg.) I had chest pains...." + (show)
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@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.

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@ropnrose I had the same experience. I am a cardiac patient having had a heart attack over 20 years ago and bypass surgery 4 years ago. I know chest symptoms. Hospital ED cleared me for any heart problems. I know it was the prednisone.

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sandiw77 | @sandiw77 | 9 hours ago
In reply to @tweet "@sandiw77 Oh boy. That’s a lot going on for you. I have every thing you have...." + (show)
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@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.

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@tweet, yes I am seeing a cardiologist and have had all the test!! I am very blessed not to have had any damage from the strokes or blindness. I feel like I have found out so many things I didn’t know or had never heard of since I first heard about PMR. So thankful that we can find others with similar issues or concerns in this group. ❤️ Blessings!

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tweet | @tweet | 7 hours ago
In reply to @sandiw77 "@tweet, yes I am seeing a cardiologist and have had all the test!! I am very..." + (show)
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@tweet, yes I am seeing a cardiologist and have had all the test!! I am very blessed not to have had any damage from the strokes or blindness. I feel like I have found out so many things I didn’t know or had never heard of since I first heard about PMR. So thankful that we can find others with similar issues or concerns in this group. ❤️ Blessings!

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@sandiw77 Your test came back good? 😊 I go to tomorrow for my first test. Had my Calcuim ct scan today.

Yes you were very blessed not to have any damage. You didn’t feel anything with your mini strokes? Do you have high cholesterol?

I’ve learned a lot to since discovering I have PMR/ GCA.

Take care!

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