Medications for Temporal Arteritis/Giant Cell Arteritis (GCA)

I was diagnosed with GCA from symptoms in April—awful headache constantly for nearly three weeks across my temples/ forehead, then jaw issues that panicked me. Felt as though my teeth were shifting position and jaw joint discomfort. Aware of seriousness, and of the false negative or positive potentials of a biopsy, we opted for a color ultrasound, which was inconclusive, but began prednisone immediately at 60mg. My pain disappeared literally overnight after one dose. I’m ending my 8th month now and really want off it because of the side effects, so, with my PCP’s advice, am tapering my dose. My goal is remission without relapse, which means very slowly. I’m down to 9 mg and the headache isn’t back yet. Finally saw a rheumatologist last week and we talked about going to tocilizumab to get off the steroid sooner, but I’m thinking it over in view of my age (80), the methods of administering the med, the cost, and the fact that I have diverticulosis and a higher risk of bowel perforation, which really scares me. Still thinking this over. I’d appreciate it if anyone with good or bad experiences on Actemra could share their opinions, as the drug’s warnings are truly dire. Like I could die during my first infusion, even if my insurance (Medicare Advantage Plan) would cover it! Thanks, all. S

Hi - so happy to hear you did go to the emergency room. As I told you before my Sed Rate was 37 and they decided that was high enough to start me on medication. It will be interesting to see how this turns out. Unfortunately, the only positive diagnosis is with the biopsy. I hope you do not have Giant Cell Arteritis. It is a long journey once you get started on the medication. I am looking at 1 1/2 years at the least amount of time. Do let me know what happens.

Charan. My opinion??? It is dangerous to the patient to have one doctor replaced at end of shift by another doctor. The hospitals now have hospilist. Doctor who have no office and work for hospital. End of shift they are gone. Not only that when you are gone they are done with you. I broke my back and cannot get the university doctor to look at it and see that they did surgery right. They cannot see me for 90 days. I was in a different hospital. The hospital required I CK in again. Oh goodness. Advocate for yourself and refuse to leave hospital until you have talked to all doctors who worked on you. There is more to it but this is worst thing as a result of Obama care. Next thing..your scripts....get marijuana as fast as you can. They are reducing ins company portion on drugs to 5 percent. Good thing I am old

I was diagnosed with PMR in March 2022. In December 2025 (symptom-free and. prednisone-free for 14 months), was diagnosed with GCA. Started with IV meds while hospitalized and came home on 60 mg (normal weight 115 lbs) and have tapered to 15 mg (still feeling common side effects of prednisone). Joined a phase III study on abatacept but have no idea whether or not I'm getting the medication or a placebo. I know there are other similar medications approved for GCA and would like to hear from anyone taking medication other than prednisone, for how long, and side effects experienced. My blood work shows inflammatory markers are within normal range; however, still have swollen temporal veins and waves of mild headaches. I've also lost weight. When I was previously taking prednisone for PMR (2 years), I gained weight, but not a significant weight gain. I'm very conscientious about my diet--one of the things I feel like I can control. Thank you for sharing.

@jr46 I'm sorry you developed GCA in addition to PMR. I also have both of them. I was diagnosed in late June 2024. My situation was very similar to yours. I started with 3 days of IVs in the hospital, and then started at 60 mg prednisone. My normal weight is 130. I was on 60 mg for 6 weeks. At 6 weeks, my rheumatologist added weekly injections of Actemra to my treatment. I've been taking it for a year and a half now. I finished taking prednisone 6 months ago. I've had very few side effects from the Actemra. I'm currently experiencing a little fatigue, but I don't know if that's from age (72), the Actemra, the PMR and GCA, or something else.

Good luck with your treatment!

I was diagnosed with PMR in March 2022. In December 2025 (symptom-free and. prednisone-free for 14 months), was diagnosed with GCA. Started with IV meds while hospitalized and came home on 60 mg (normal weight 115 lbs) and have tapered to 15 mg (still feeling common side effects of prednisone). Joined a phase III study on abatacept but have no idea whether or not I'm getting the medication or a placebo. I know there are other similar medications approved for GCA and would like to hear from anyone taking medication other than prednisone, for how long, and side effects experienced. My blood work shows inflammatory markers are within normal range; however, still have swollen temporal veins and waves of mild headaches. I've also lost weight. When I was previously taking prednisone for PMR (2 years), I gained weight, but not a significant weight gain. I'm very conscientious about my diet--one of the things I feel like I can control. Thank you for sharing.

I was diagnosed with PMR in March 2022. In December 2025 (symptom-free and. prednisone-free for 14 months), was diagnosed with GCA. Started with IV meds while hospitalized and came home on 60 mg (normal weight 115 lbs) and have tapered to 15 mg (still feeling common side effects of prednisone). Joined a phase III study on abatacept but have no idea whether or not I'm getting the medication or a placebo. I know there are other similar medications approved for GCA and would like to hear from anyone taking medication other than prednisone, for how long, and side effects experienced. My blood work shows inflammatory markers are within normal range; however, still have swollen temporal veins and waves of mild headaches. I've also lost weight. When I was previously taking prednisone for PMR (2 years), I gained weight, but not a significant weight gain. I'm very conscientious about my diet--one of the things I feel like I can control. Thank you for sharing.

@jr46 My understanding of clinical trials is if you are in the control group, i. e. the group not getting the drug being tested, they put you on the "standard of care". That means most likely you are receiving Actemra/Tyenne in place of the drug being tested. The results will show if the new drug performs better than, equal to or worse than the current standard treatment.
I cannot believe if you have GCA that they would not give you some treatment. That seems like that would put you at undo risk.