Who has GCA, Giant Cell Arteritis?

@elizabeth22 Welcome to Mayo Clinic Connect! You are definitely in the right place to ask questions and give helpful tips to others. Your vascular surgeon most probably wants to do more investigating into your carotid arteries and the only surgery that I’ve heard of is biopsies of the temporal veins. I know that you
Remember, to just take it easy the 1st year or so as you become acquainted with the disease and all that goes with it. Just keep on walking and you’ll build up strength for all the rest. You’ve taken a big step here and that tells me that you’ll do fine!

@elizabeth22

Hi. You have come to the right place to learn & get support from fellow sufferers of this disease. It’s so important to connect, especially at the beginning when everything is scary & overwhelming. It was for me.
I’m 67, have had Lupus & diabetes, Hashimotos for 30 years. But this last spring, I got really sick in March. 2 different hospital ER visits where they had no answers as I got sicker. My CRP was 266; should be below 10. Sed rate high too. These are inflammatory markers & mine were dangerously high. My husband said enough is enough; I am bringing you to the Mayo Clinic ER. They were surprised I did not stroke out or lose my sight. They scheduled surgery for later that evening to do the temporal artery biopsies & the right side came up positive. Started me on high doses of IV steroids which help those horrible headaches calm down to a manageable level. I had other organ involvement & have lost a little sight in one eye but Opthamologists will deal with that when I’m tapered down on the steroids. I stayed in Mayo for 2 weeks, having come home about a month ago. The neurologist at Mayo on the amazing team of Drs. that helped me did 3 separate MRI’s to see how much nerve inflammation or damage there was, especially in the orbital area by the eyes.
So it’s important that with those headaches they look at that. The biopsy is easy as far as surgery goes. The worst thing I’m still dealing with is the 3-4 inch incisions that are almost healed on each side. Looks a little funny with shaves temples; Bride of Frankenstein look! Ha!
I needed only one dose of Oxy right after surgery but pain was mild after that.
GCA is for me, much more intense & serious than my Lupus ever was so I’m still at the beginning, learning about the disease & taking it day by day in my recovery which will be slow. I’m seeing my Rheumatologist at Mayo next week to talk about trying Actmera injection to help me get off high doses of Prednisone which are causing many side effects especially with diabetes. Hope Actmera works!
Sorry for long story but I wanted you to know you are not alone on this journey. Please update us all on your progress. Wishing you good health.

Hi Mama C!
Oh, I hear you! No need to apologize. I am 66 and was diagnosed with GCA in March 2025 after my primary doctor misdiagnosed me 5 times! You’re fortunate you have a spouse who cared enough to take you to the Mayo Clinic - really a wonderful place, from what I’ve heard, and it sounds like they were very thorough and did all the right things. I live in the Boston area, so I’m fortunate to have access to great doctors here. I was hospitalized for 5 days when a random rheumatologist couldn’t get my pulse or blood pressure. I say random because my primary doctor thought I had RA, among other diseases. The high doses of prednisone in the hospital and post stay were tough. It’s a drug I have a love/hate relationship with! I had to taper slowly over 6 months before I was completely weaned off of it. Your rheumatologist may have a different approach. And the headaches! I still have them too. I think mine are related to lack of hydration, though, especially during these warm days when I’m exercising more and forgetting to drink enough water. I know what you mean about the Bride of Frankenstein! I had my double biopsies 15 months ago, and I still have some residual scarring. I’m sorry about the partial vision loss and the lupus. I started Actemra in April 2025 after I got out of the hospital and it’s a miracle drug. If you start on it, make sure you take it out of the fridge and warm it to room temperature! It’ll make the shot less painful. I also started a peripheral artery disease rehab program twice a week. It’s been very helpful since I can now walk longer distances before I hit the pain threshold. Keep me posted on your rheumatology visit. It’s good to know we’re not alone. All the best!

@elizabeth22
Thanks for all the helpful tips. I’m really hopeful about the Actmera after reading your experience & great advice on warming it up. How often do you take yours?
Also what exactly is peripheral artery disease rehab? I have heard others mention it.
Thanks in advance.

@momac59

Hi. I take it once a week. Due to insurance, I had to switch to Tyenne last month. It’s basically the same thing as Actemra which is a biologic.

The PAD rehab program is similar to cardiac rehab (I don’t have heart issues) in that I get my vitals checked first, then I go on a treadmill and get monitored. When I reach that threshold of pain, I stop and get my vitals checked again. The purpose is to increase my walking time before I reach my pain threshold. I hope that helps.
Happy Sunday!

@elizabeth22
Thank you ! Yes, that helps alot.

Hello @elizabeth22 , Just wanted to share with you my experience with GCA. I hope the Actemra works for you as it did not work for me. I am still at the trial and error stage. Here is my story. I received my diagnosis in Jan 2025 (at the time I was 67yrs old). I had severe temple pain in my right temple for a week or two. Went to see my Primary Physician and she started me on the high dose prednisone (60mg) then referred me to a Rheumatologist and a Surgeon. I had a biopsy done a week later. Because of the high dose of prednisone, 6 days prior to surgery, I was told that the results might come back as negative which is what happened. Once the pain went away we started decreasing the Prednisone. Once I got down to 7.5mg prednisone the temple pain returned (relapse #1). I had to go back up on the prednisone dosage (30mg) until the pain went away. We decided to try Actemra as I decreased the prednisone again. I used Actemra for 4 weeks then ended up with diverticulitis so had to stop the Actemra. While continuing on the decrease of Prednisone I got down to 10mg and the pain came back (relapse #2). I had to go back up on the prednisone dosage (cant remember if it was 20mg, 30mg or 40mg on this relapse). My Rheumatologist suggested we try Methotrexate as we decrease the prednisone dosage. Methotrexate caused me to be extremely tired and out of breathe when I did any physical activity. I am usually a go go go person so this was really causing issues with daily life. We discontinued Methotrexate and continued decreasing the prednisone. I got down to 8mg prednisone and the pain came back. Ended up back at 40mg prednisone (relapse #3) until the pain went away. Unfortunately the pain took longer to go away this time then the last 2 relapses. Rheumatologist suggested we try Rinvoq while we decrease the prednisone. We have been decreasing the prednisone every 2 weeks. I am now down to 7.5mg (as of 5 days ago). So far so good. I am a little skeptical though as this dosage is where I had my first relaps. Fingers crossed the Rinvoq works. If the Rinvoq works with the 7.5 mg prednisone we plan on staying on the 7.5mg for a few months before we trying going down to 6mg prednisone. The goal for me and I believe everyone else taking prednisone for this disease is that we can get off prednisone completely. Hopefully you will not have to go through any relapses and Actemra will work for you. The downside to all this prednisone, for me, is each time I have to go up on the dosage it puts more weight on me. One of the prednisone side affects that has hit me hard. I am hoping that once I can level out on the prednisone some of this puffy weight will come off. I have not lost any vision yet but I have seen my Ophthalmologist twice in the last two months because my vision in the left eye seems to be getting blurrier. He feels it is just a change in my vision. I go back in another 2 months to have it checked out again. I don't know if this is also a side affect to all of the prednisone I have had to take or not. Time will tell. Don't want to cause you to worry but wanted to give you a picture from someone that has not had a lot of luck with these other medications. I truly hope your journey with this disease is not as trying as mine has been. I check this site about once a month so please keep us updated on how you are doing. Saying prayers for you and everyone else dealing with this disease.

@eaod
I too was started @60 mg prednisone. Then methotrexate was added and titrated down to 10 mg over 6 weeks. Started monthly IV Actrema. Rheum stopped methotrexate 2 weeks ago and lowered prednisone to 7.5 mg. Headache and jaw pain returned. Back to 15 mg prednisone which has helped. Not sure where going from here.

Hello @gailcha , please let me know what your rheumatologist decides to try next. Sounds like you are still at the trial and error stage also. Are you still doing the actemra IV along with the 15mg prednisone or just on 15mg prednisone right now?