Giant Cell Arteritis questions

Contact your rheumatologist and ophthalmologist today and get their advice. It sounds like you need to be re examined. Make sure they get your message.

I started prednisone in March and Actrema in May. Was down to 10 mg prednisone but symptoms returned. Definitely check with your rheumatologist and ophthalmologist. My rheumatologist told me if symptoms return then inflammation still active. She is sending me back to ophthalmologist to check if blood vessels in eye inflamed. I had to go back up to 20 mg.

Hello @alicoo, Welcome to Connect. I have no experience with GCA but when my PMR was active, my rheumatologist was always concerned and wanted to know if I had facial pain, headaches or vision problems during my treatment. If you haven't already discussed your questions with your primary care doctor or rheumatologist, I would contact them as soon as possible.

I'm tagging members @alandy233, @tsc, @jeff97, and @susang222 who have experience with Giant Cell Arteritis and may have some suggestions to share with you. Have you talked with your rheumatologist or doctor yet about your questions?

@johnbishop Thank you. Yes, I have messaged my rheumatologist but have not yet heard back. If I don't hear back today I will also message my primary care doctor, who is usually more responsive than my rheumatologist.

If you don't hear from a doctor today, I would recommend going to 20 mg. The headache and vision problems are very concerning. I came close to losing some vision from GCA, but I started treatment just in time to save it. I took Prednisone for 13 months, and I'm in my third year of Actemra. Once I started treatment, I didn't have any more symptoms or flares. But Actemra isn't completely effective for everyone. The chances are you won't lose vision, since you're taking Prednisone and Actemra, but you should see your rheumatologist as soon as possible

@jeff97 thanks 🙏

Hi @alicoo, I had PMR first, then GCA twice and am currently in remission. I was only treated with prednisone. A doctor friend told me that if I ever experienced visual disturbance to go to an Emergency Room immediately.
Hopefully your rheumatologist will get back to you quickly, and if not your PCP. If you keep feeling unwell, it may be best to go to an ER.

@tsc Thanks. My rheumatologist got right back to me. We upped my dosage but she also said go to the ER if vision deteriorates.
I appreciate your input.

I was diagnosed w/GCA in July of 2025...confirmed via biopsy Nov. 2025. My dose of Prednisone has varied - up and down - for 12+ months. I did weekly Tyenne injections (6 in all) until manufacturer ran out (!!). I was on 20mg Prednisone until today when I contacted Rheumatologist about some on/off symptoms (jaw claudication) and what I thought could be another very bizarre symptom: bursts of pain in my right ear. She told me to double up Prednisone (to 40mg) and to let her know status of symptoms. Anyway...preserving my eyesight is paramount and whatever dose of steroids accomplishes that, is a risk I will take. In closing, I thought Actemra can take quite a while to kick in and Prednisone is still an important stopgap.

If a patient is on Prednisone and Actemra to treat a GCA flair on average how many infusions of Actemra are required before symptoms are resolved and the patient is in remission.