Who has GCA, Giant Cell Arteritis?

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.

@eaod good morning! I have been trying to find out abt GCA as well after symptoms aand 2 months of pred , hospitalization, etc. Like you, biopsy not accurate due to delay (3 weeks) and rheumatology appt 6 months out.
I am followed at a teaching hospital 2 hours away and my prayers were answered last week! My immunology Fellow also is a Rheumatology Fellow! She will see me next Monday. We are so grateful.
She will discuss med changes as well. I'm aware that these powerful drugs are difficult to tolerate. Our patience in trying them is required, tho certainly not an easy thing.
Plz continue to post updates, I will pray for you daily. God bless us in our journey.

Yes, my path is all too similar, and I will pray that yours becomes smoother.
My biopsy was not accurate (pred X 3 wks by the time it was performed) and one relapse in over 2 months while on 60mg day.
My symptoms (headache, jaw pain, chest pain, inability to sleep on either side of face or chew due to pain) were textbook, BUT due to multiple autoimmune diseases processes my lab values rarely reflect accurately what's going on.
I am seen at a university teaching hospital 2 hrs from our home, and prayers answered. Will be seen next Monday in Rheumatology!
Medication changes to be discussed and careful and cautious treatment options.
I am a "No Code/do not resuscitate" patient (unless admitted to hospital) and I believe God,through the actions of these Incredible healers, has continued to keep me here.
I will pray for you daily for strength to endure, rest and healing.

I was diagnosed with GCA about a month ago. Started on 60 mg prednisone by ophthalmologist. Rheumatologist tapered down to 10 mg and added Rinvoq and methotrexate. Blurred vision improved. Biggest problem I’m having is dizziness and balance issues - affects my ability to do anything. Not sure if due to meds or GCA. Anyone else have this problem?

I had pain behind one eye for months. Went to doctor when it woke me up at night. Had been having jaw pain too but thought it was just TMJ. Been having headaches during all this time too. Meds cleared up blurry vision and jaw pain. Continue to have headaches but not as severe. Rheumatologist said biopsy not necessary as would treat symptoms anyway and they can come back false negative. Good luck!

@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!

@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!

Everyone who is wondering about GCA needs to follow the PMR Poly Myalgia Rheumatica group here on Mayo Connect. About 20 percent of people with have PMR also have GCA, so there are plenty of people a little ahead of you on this journey who would be happy to share with you.
I happen to have both as well. I am currently having problems with find a biologic my body will tolerate.

@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💪 ❤️

@wendy517 FIsrt, thanks for the note - yes PMR is a difficult problem to deal with. You could still have PMR even if your inflammatory markers are never elevated - that is not a given with this problem. I hope you are seeing a Rheumy. PMR is a default Dx which means if you have certain symptoms and they cannot find anything else they will Dx PMR. There is not test for PMR. As a result I maintain that PMR is a catchall for everything in the autoimmune world that does not have a specific test. I'm convinced PMR is not one problem but many yet to be identified and they all get the same treatment. Spend one day in the PMR Connect chat room and you will see how divergent the symptoms, testing and treatments are. I wish you success on your journey.