Who has GCA, Giant Cell Arteritis?

I (68yo female) was somewhat diagnosed with GCA in October 2025. Put on 60mg prednisone and all my crazy symptoms subsided. The surgeon was unable to locate my arteries and therefor no confirmation of GCA, however GCA symptoms were clear . I also had a a few days of intense painful breast lumps, ultrasound said fibrous. Since researching on Doctor Google, I believe I also have PAN - makes sense. I have never had PMR symptoms, however my dad was diagnosed with PMR and in hindsight, my mom had GCA. (What are the odds?) Meeting with Rheumatologist again next week to discuss long term plan. I am down to 1.5mg prednisone (quite fast plan at my insistence) with the only symptom of fatigue. So in summary, I know I have GCA (had incidences in my 50's that ignored and called it stress) but I think my diagnosis is a little more like vasculitis and GCA. Now I wonder what to do long term. I would like to go drug free but worry will I get signs before a full blown reoccurrence with possible blindness or aneurysm. If you have had a reoccurrence, did you get any warning signs? Fever, headache, weight loss? Or just BAM, there is is again? Were you on any drugs at the time and which ones?

So glad you are getting the help you need with the biopsies as a start to diagnosis & treatment. I just had mine in the hospital at Mayo a week ago & yes, the right temporal artery was positive. The procedure itself was under General Anesthesia & not bad at all. My 2 little incisions are healing nicely & only needed pain meds for post surgery a couple days. I’m still here at Mayo, 10 days now, having been getting high dose IV treatment. This has really helped me feel so much better. PMR pain & those horrible headaches are so much less intense. And having that diagnosis has taken so much fear & uncertainty stress off me. Unfortunately for me though, I am not responding well to the transition from IV steroids to oral prednisone due to some other issues too long to get into but I feel like these Drs. here are going to figure it out & finally trust that I will get better & my eyesight will maybe not improve but at least not get worse. I’m an artist so that to me was the scariest prospect to face. I wish you much luck with diagnosis & treatment. Stay hopeful! 👍🏼

I spent 4 days in the hospital last August and was diagnosed with GCA and PMR. I already had lupus. The biopsy was no big deal. High dose steroids for so long caused major issues. After 5 months I was driving and walking without assistance
I am also on Actemra which has allowed me to reduce steroids.

@ptz71
Here's the website. https://terrywahls.com

I hope you do well on prednisone, and have an uneventful taper when that's appropriate. Please be in touch with me if you have any questions.
Yes to a Good Day! - Sunshine! (to quote the Beatles)
Sara

So hard to hear all the struggles. I sure hope your eyesight improves. This is a humbling disease. Everyone has struggles and of different degrees. The Mayo is a great place to be. The steroids are tough and I am fortunate they worked for me. I hope that they get you figured out and that you get better fast.
I feel that things change almost everyday, as yesterday, I think I started to relapse. Well one thing for sure, thanks for the doctors and the advancement in care since my dad was diagnosed PMR 40 years ago. Bless you and YOU stay hopeful!! You are in good hands.

@wannabe Thanks for sharing that ! I, too have been dealing with Lupus for almost 30 years. I’m 67 now. But I’m hoping like you in a few months I will be back to my old self. My Rheumatologist here at Mayo wants to transition me to Actemra eventually to get me off the steroids as much as possible. So thanks for your encouraging words!

@bettsgca Thanks so very much for your encouragement! I feel so, so lucky that I was able to get into Mayo. The level of care here is incredible. That gratitude has kept me feeling safe, positive, & hopeful even through the set backs. Sometimes when I project too far ahead, wondering how this will affect my husband & my so far nice retirement, I get anxious but then I tell myself ONE STEP AT A TIME! Just happy for the little wins & living in the present. Thank you again!

@momac59 Hi. I have been diagnosed with GCA for about 20 years. It started with PMR. I was on prednisone for about 2.5 years at first (took that long to become weaned off prednisone). Now I am on Methotrexate. I have had the beginning of a relapse a few times, but I contact my doctor soon and usually a small increase in dosage (or in the past a change of medication) resolves it. My relapse usually begins with a sensitive scalp, and sharp headaches. I usually give those symptoms a few days to just make sure they don't go away before contacting my Rheumatologist. The signs of a relapse for me are not dramatic (like vision issues) but less serious, and are easy for me to recognize.
Hope this helps to reassure others regarding my long term experience, Prior to my diagnosis I had no knowledge of GCA or had even heard of it. Very thankful that has not impacted my day to day life in any major way. I get apprehensive when I begin to get signs of a relapse, but have confidence in my doctor that she can help me. I know that places like the Mayo Clinic are there to help also. I just make sure to take my medication and have regular visits with my doctor.

@4missvct
Your comment is just what I needed to read! After almost 2 weeks in Mayo, I’m finally home. Doctors slowed tapering a bit & gave me an IV infusion of Actemra or Tyenne & that helped enough to lower my prednisone without causing symptoms of relapse.
But in all my time to think with this new diagnosis I was wondering how will I know if I’m having a flare? With my Lupus it’s very subtle & builds slowly. Your comment about how your GCA manifests made me calmer thinking about how this last 6-8 weeks of illness started for me before diagnosis & treatment, making simple sense. That specific kind of headache & scalp tenderness, night sweats are very different for me than the horrible fatigue, joint pain & loss of appetite etc., of a Lupus flare
Thanks for sharing your experience!

@4missvct
May I ask if you’ve experienced any side effects from Methotrexate?