Who has GCA, Giant Cell Arteritis?

@gailcha AHA! I too felt my old diagnosis of TMJ was to blame! The possibility of vision loss was the impetus for immediate prednisone. Yes, though the biopsy is considered the "gold standard" my surgeon told me 15-20% of patient's results are inconclusive. And yes, treating symptoms is a positive step.
I hope your situation continues to improve with treatment. Thx for offering your story...it's very helpful!

@gailcha my symptoms began with blurred/double vision, jaw pain (unable to tolerate discomfort while lying on either side of head), severe headache, chest pain etc. I had no clue what was wrong, went for 2 months. Temporal artery biopsy delayed another 3 weeks. Prednisone 60 mg tapered over 4 weeks with recurrent symptoms.
It's quite confusing to navigate this illness, isn't it. Balance and gait problems already existed for me, and im sorry you're experiencing these life-altering effects.
Plz continue to reach out for answers and support. The powerful medicine we take for relief (and its side effects) can be daunting.
Thinking if you with this morning with compassion. We're in this together!

@ptz71 thank you for your response and hug, much appreciated!

@jabrown0407

Hi! I'm praying for the results today. Was having mixed feelings about + BUT now I'm excited to find out. The daily headaches for about 3 years now, occasional relief with narcotics, hate to take them but necessary evil.

Woke up with my usual headache, did start on 80 my prednisone yesterday and I did have some relief from the crashing ones, blurry eyes, but mostly left so assumed that's where I could have gone blind.

I'm a pretty voracious reader of self help books for my ADHD, spinal herniations and everything Autoimmune. My Mom has both PMR and GCA and has been very successful keeping them both in remission. She knows her body well, like I do. The minute her SED creeps up a few tics and she feels it. She goes on a short term dose of prednisone, nips it and NO resurgence of these HORRIBLE diseases. Plus they're hidden, meaning, we get, Wow you dont look sick and you do fun things. Lol, I am opposite of homebody, I do like it for a couple few days but will go into the dark place if I'm stuck at home, like with my broken right foot and cant drive. Luckily ive 2 amazing friends who know me better that I know me and by day 3-4 they're asking if i want them to pick me up so we can go out and about for the day with no driving for me and something relaxing like walk to a waterfall and enjoy nature's beauty and a restaurant where I can chat briefly with random strangers lol.

I believe about 50% have the PMR/GCA combo, so since they based my No PMR diagnosis, with the whole symptoms Ive had for about 3-4 years now will definitely be reconsidered. My SED rate has never been high through this entire multi year journey.

Honestly, ive never ever been a mean person, occasionally mean outbursts which typically happens when my body head all hurt A LOT. So, I try and give myself some grace. But do I ever wish to go back to a few docs and say FUCK YOU for NEVER listening to me.
My current GP (MDVIP doc) is FABULOUS and listens to me always. He's getting a big hug along with my Rheumy, she's been instrumental in saying, we will get to the bottom of this and diagnosed me with Hashimotos. Next was resolving all my other pain and she's ordered so many tests on me, I'll probably glow in the dark soon. Which is kinda cool, ready made night light for my multiple trips a night to pee. Next on my list.

I'm embracing growing old gracefully and being able to ski & hike until I drop dead. With all this craziness its put a huge damper in my favorite activities (live football is another, all live sports) and I'm like walking on clouds with a bad headache and wonky tummy (ive got SIBO) feeling SO HAPPY.

This group at Mayo is going to be so good good for me, THANK YOU for such a nice response and I'll pray for you too 🙏 ❤️

From, maybe, a member of the GCA tribe💪 ❤️

@ptz71
My Mom told me yesterday she was put on 60mg daily and she weighs about 120 lbs wet, lol..it put her into a psychotic break at a UK airport. My Dad had no choice but get cops involved, she wouldn't give him back his phone to talk to my brother who was picking them up in Newark since he lives 10 mins away. Je wanted to prepare him for what she was like.

She was mortified & embarrassed and doesnt remember a thing. When she heard our MDVIP doc put me on 80mg day to start while waiting for dx after the TAB. She kind of freaked, were the same build, i just have mor muscle mass and so afraid to lose more of it.

I'm waiting for his call this am, to ask why 80mg and why not much less and put methotrexate in the mix. I suspect he was scared for me going blind. My eyesight has deteriorated pretty significantly and a lot of pain in my left eye, temple, jaw, neck, shoulders etc.

However it doesn't matter, my Rheumy will call me from my note to her in MyChart. She's been amazing and will definitely work on a med cocktail that will be a little better with less bone and muscle mass loss. Ive had so many symptoms for 3+ years with the Hashimotos, Hypothyroidism, 4-5 disc herniations in neck & lower and my L5 disc has been disintegrated and not there for a good 30 years now. I'm getting to the point of cant take the pain and want a cortisone shot but freaking insurance makes it SO hard to get approval.

My Hemoglobin went up to 19 at one point on 2023, tested again 6 weeks and later and he was shocked it wasnt normal, sent me to the first hematology oncologist who was a comple and utter condecending asshole and diagnosed with PV. Found another hem/onc who ignored / didnt listen and told Unemployment Inwas fine to work. They wrecked me with taking 5 pints in about a 2 month time frame. I think that would wreck a lot of ppl. Went to a 3rd oncologist after a recommendation from a trusted Cardiologist who took car of my dad, BIL and sister. being wrecked by them taking too much blood and then I couldn't get up a flight of stairs without having to rest. Im a very active person, ski, hike, kinda don't stop moving or doing something, part ADHD, part single Mom with 3 kids and no help from exes or family so I was used to doing everything myself with no help.

Love these forums, the hear i thought I had because 2 docs told me, bad docs. I kept saying I don't think I have it since Im Jak2 neg, less than 5% with Jak2 neg have PV.

The next wonderful hemo/onc doc connected dme eith him, he listened really listened when many will fall silent with women and say your just depressed so take this pill and youll be fine. No thank you. My BP had been going haywire from high to low, they picked meds for high, it was a crap shoot..did end up working/helping. I went off them 2 months ago and my BP has been great. A win!

The new hematology oncologist got me in for a bone marrow biopsy within the week..Hurt like a mother effer 😉 but clearly showed NO blood cancer whatsoever. we never were able to get a dx other than it must be secondary PV and there something wrong in my body, they say usually cancer. Nothing has been found, its ticking back up methodically and with no answers as to why. Whatever, ive got bigger fish to fry with the GCA & PMR.
My spine docs/pain mgmt group are wonderful, very sports oriented which is what I need, my goal is to ski well into my 80s, ive skied with 90+ year olds, my idols. I skied next day with a cast on my arm from a stupid fall with my siblings. Ski patrol wanted to "Locate" it for me on the slope. My gut said no way, took my glove back, skied down with my sibs with one pole, went to medical and right away he said, I think its broken and got to Rutland hospital in VT. Got casted and he was a skier so talked to my folks. I agreed to no jumps, no woods skiing and id be careful. I obeyed for the most part 😉 after id broken my upper arm/shoulder swinging from a vine & fell 25 ft, they wanted me in traction. Mom knew id be miserable stuck in a bed for 6 weeks and we went to an ortho guy who used my arm muscles as traction with a very heavy cast, brilliant solution. He said no sports for a good 2.months. I was playing kickball in the neighborhood the next day or maybe 2 days later. If my Mom ever knew she'd kill me for yet another broken bone so I told a fib about how it happened. She would have died seeing me climb trees 3 stories high so xi could say I neat all the boys haha. Slightly competitive in a nice way though.

So sorry, what a tangent I took down memory lane, last night my daughter told me im bad ass, kinda like it ❤️

I will use this group a lot since the blood cancer group was invaluable to me and its so nice having a tribe around you for support & advice.

God bless and feel better soon 🙏

I have been struggling with Temporal Arteritis (GCA) for 14 months now. I had a biopsy done 1 week after I had seen my PCP for severe temporal pain. She started me on high doses of Prednisone. Referred me to a surgeon and a Rheumatologist. By the time the biopsy was done the result was negative. The surgeon warned me that we could get a false negative because I had been on the high dose of prednisone for 6 days and by the time we did the biopsy the pain/inflammation had gone away. I have had 3 relapses in 14 months. We tried Actemra along with prednisone . After 4 weeks on that I ended up with diverticulitis so we had to stop that medication. Then we tried Methotrexate along with prednisone. The side affects with that were not good. I had no energy, more stomach aches than normal and I would fall asleep in the afternoon. Very uncommon for me as I usually have a lot of energy. We had to stop that one. once stopped, all my energy came back, thank the good lord. I just had my 3rd relapse. We are now trying Rinvoq along with the prednisone. The hope for me is that we can get down to a low dose of prednisone while taking the Rinvoq. My biggest fear is loosing my eye sight so I will keep trying whatever I can in order to save my eye sight. If your biopsy is positive for GCA or if it comes out as a false negative, you might want to see about working with a Rheumatologist. My Rheumatologist has been great. He has been working really hard with me to try to find some other medication other than a steroid to get this under control and hopefully in remission. I wish you good luck with your biopsy. I do hope you get some answers from it. Please feel free to reach out and share your information. You are the first person I have seen comment on GCA on this site so I felt I needed to send you a response. This is the first time I have ever sent a response. It is nice to know we are not alone in this challenge. Please let me know what you find out. Sending prayers your way.

I’m responding to Wendy but hope anyone dealing with or wondering if they have GCA might benefit from hearing my story. I had the blinding headache, I had the long waits for referrals, I had the negative biopsy after starting prednisone. I found the whole thing horribly demoralizing and scary. Everything seemed out of my control and unpredictable. But luckily I remembered a particular diet I had read about years ago and I decided to try it to see if I could help myself as I went through the process. It’s Dr. Terry Wahls diet and to put it simply you eat protein and 9 cups of fruits and vegetables every day being sure to include colorful vegetables with polyphenols and asparagus and broccoli type veg . She’s an MD who got improvement with her MS using this diet which focuses on strengthening your mitochondria. She recommends it to people with other autoimmune diseases. It’s simple, unless you have food allergies, it won’t hurt you and I never got hungry. I’m over a year off the prednisone now without a recurrence of the GCA. I ran the diet by my doctors of course, and they said it looked great. She’s got a website and a book if you’re curious. I know it helped my physical snd mental health while I was taking the steroids and I still follow her principles.

@eaod I too ended up with diverticulitis after 10 weeks on Tyenne, biosimilar to Actemra. My Rheumy and I are looking at trying Kebzara next. I also have PMR (polymyalgia rheumatica) along with GCA. My AI tool got me this info - **The FDA‑approved drugs for treating Giant Cell Arteritis (GCA) are:
Tocilizumab (Actemra/Tyenne) — IL‑6 inhibitor
Sarilumab (Kevzara) — IL‑6 inhibitor
Upadacitinib (Rinvoq) — JAK inhibitor (approved April 2025)
My Rheumy is willing to try me on 150mg Kevzara every three weeks to see if a low dose will work. There are also drugs that are used off label to treat GCA. Talk with your Rheumy about options.