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Adjusting to life with temporal arteritis
Would like to hear from people that have gone thru or going thru temporal artritis. I am now going on my 5 month after being diagnosed. It is getting better but very slowly. Is this normal?
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@prednisone4gca how often do you have Dexa scan? I had baseline done and T scores are only mild to moderate so they are not treating w meds yet. I’m wondering how long they wait to look at repeat dexa when you’ve been on prednisone 60-50-40 for 3 months. You say taking Calcium is important but that has not been recommended yet. I take Vit D and that’s in range and lab shows blood calcium to be in range. Can it be followed that way? I’m thinking bones need it. Could diet help with out supplement? Looking forward to hearing more if your experience. Thank you.
Hello,
I’m 72 and just found out I have Giant Cell Arteritis. No biopsy because rheumatologist feels it may be a low yield, since I’ve been on prednisone for two weeks. Had MRA/MRV, and am having sonogram of my temporal artery. Mostly classic symptoms, except sed rate is normal, but C-reactive protein was elevated.
I’ve never heard of this condition. I am bewildered!
Throbbing headache in temple started after a migraine. Saw my ophthalmologist, thankfully no change in vision since last eye exam.
Put myself on an anti-inflammatory diet, am taking vitamin d, vitamin k2, magnesium and calcium. Will be having a bone scan soon.
Trying to educate myself about GCA and navigate my new condition. Would appreciate any feedback on living with GCA.
@liz26
I was diagnosed with GCA in April of 2025 with similar symptoms but thankfully no vision loss. Was started on 60 mg of prednisone which immediately eliminated my symptoms. In June, I added the drug, Rinvoq, which enable me to more rapidly taper my dosage of prednisone. Rinvoq had just been approved as a drug to control GCA while reducing steroid intake. I took my last dose of prednisone in January 2026 but will continue to take Rinvoq through spring of next year. I have been in remission since August of last year and have had no relapses. Since remission, life for me has returned to normal so my hope is that I will stay in remission following my Rinvoq taper next year. The worst part of this journey for me was dealing with the sleep disruption side effect from high prednisone use. Fortunately that eventually settles down with dose reduction. I will add that I was a very fit and healthy 74 year old with an excellent diet and no other heath conditions when I was hit with this and I have found this to be true of others as well. I hope sharing my journey with you has been helpful. I know what a shocker it is to be initially diagnosed with this condition but rest assured it can be managed.
@liz26 I was diagnosed with GCA and PMR in late June 2024. I was diagnosed in the emergency room due to vision problems in one eye. Luckily my vision was ok once I started treatment. I started at 60 mg per day of prednisone, and began taking weekly Actemra injections a few weeks later. I finished prednisone last August, and I'm still taking Actemra injections every other week. Assuming I don't have any flares, I will finish the Actemra next summer. That will be 3 years of treatment.
I was like you. and felt very lost when I was first diagnosed. I eventually got used to all of the changes caused by the diseases. Once I started treatment I never had any more GCA or PMR symptoms, but I did have quite a few side effects from the prednisone. Insomnia was bad until I got down to 40 mg per day. Also my metabolism was really messed up by the prednisone. It was very hard for me to know what and how much to eat. I was careful with portion control, and I continued exercising (walking or a mix of walking and jogging for 4 miles day, plus weight lifting and stretching every other day). I only gained 4 pounds, but I still developed a moon face. That started fading once I got down to 7 mg per day.
It sounds like you're doing the right things. I still take all of the supplements you listed. I saw my ophthalmologist every 3 months while I was taking prednisone. The prednisone increased the pressure in one eye, but it wasn't enough to treat. The prednisone also increased my cholesterol quite a bit, but it went back down as I tapered.
I was very tired the first few months of my treatment, so I rested a lot of the time.
On a positive note, I've felt very good since about 6 months after I finished the prednisone. I'm running better now than I have in several years.
Good luck with your recovery. You just need to be patient.
@hughebo2
Thank you for sharing.
Yes, I’m having insomnia from the Prednisone. I start tapering in a few days. My symptoms are gone, and I hope it stays that way. I understand this is a slow process.
@jeff97
Thanks so much for responding and sharing, especially that the insomnia lessens as the dose tapers. That’s hopeful! Will be talking with rheumatologist on next visit about adding another drug.
Thanks again! Be well.
@liz26 I asked my rheumatologist for recommendations for the insomnia, and he didn't have any. I experimented and found that 5 mg of time release melatonin helped me to sleep 5 hours a night. I would be a little groggy during the day afterwards, but it was worth it to get some sleep. You could try a lower dose first, such as 1 or 3 mg.
Regarding another drug, I have had a very good experience with Actemra. It doesn't work completely for everyone, but it does for me. It's expensive though and isn't covered by some insurance plans. Tyenne is a different version of the same drug as Actemra, tocilizumab, and it costs a little less and seems to be covered by more insurance plans.