GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica)

I was diagnosed in May 2022. I did not have many typical symptoms, but I did have unexplained weight loss, fatigue & my neck shoulder area was stiff. My Mayo Clinic doctor decided to run tests just in case & it popped up right away. I was started on 40mg of prednisone & Actemra infusions ever 4 weeks. My inflammation was completely normal after 1 month. I was tapered off the prednisone just 4 months later but I’m still taking the Actemra infusion every 4 weeks. I’m hoping that someday I’ll be off the Actemra for good. FYI, I’m 72.

@maryo1952 What were the tests the Mayo Clinic doctor ran? Were they the standard TAB (temporal artery biopsy), blood work (SED/CRP/ANA) or other tests?

I did not have a biopsy. I had a CT scan with dye. I’ve had several Scans with dye since & improvement is noted each time. The rheumatologist, a woman, was fabulous. I wished she could be my doctor here in Chicago, but now I’m under the care of another fabulous female rheumatologist at Rush Hospital.

Yes I was just diagnosed with GCA after having PMR for over a year. Diagnosis confirmed by double temporal biopsies. Started on massive dose of iv prednisone after a double vision in one eye followed
By 60 mg. Now tapering weekly following the AIACTA study. Hoping to start Actemra weekly injections this week but help up with doc and insurance issues.

Sorry following the GIACTA study

@bradninchgirl

Thanks so much for this information!! My husband has very bad tinnitus and he has some hearing loss as well. So he is understandably one grumpy guy!! Going to give this a try!

Menthol Essential Oil is that a supplement or an ear drop, and how much do you take? My brother has suffered with tinnitis for many many years, so it wouldn't for him to try it. Look forward to hearing from you.

I was diagnosed with GCA in Feb. 2025, started immediately on 50mg Prednisone. After two weeks I still had jaw and some tongue involvement, so increased to 60mg. Around week 5, I started ACTEMRA infusions once per month and started Prednisone taper to 40 two weeks, 30 two weeks, 20 two weeks. From 20mg, I am now reducing by 2.5mg for one month each. At this pace, I will need about another 7-8 months to get to 0 prednisone, which is the hope. Actemra infusions continue one each month.

You give me hope. I have started the Actemra self injecting pen every other week. So far so good. Too early to stay the taper and I’m down to 4 mg a day now. But will begin to taper after I have a few injections on board. Thank you.

I've been injecting Actemra weekly for almost 10 months, and I also take prednisone. I have GCA and PMR. I started at 60 mg prednisone a day, and now I'm down to 4. My rheumatologist wants me to taper 1 mg a month. I haven't had any issues since being diagnosed almost 11 months ago.