Giant Cell Arteritis

Hope you get some responses.

I struggled for 6+ years with PMR before asymptomatic GCA was Dx recently. I would think they would start you on Tyenne ASAP if they can eliminate other possible autoimmune problems that need other treatments. Tyenne, administered either by self-injections or by infusion at an infusion center, is one of 2 drugs approved for GCA the other is Renvoq which is a pill. You need to talk with your rheumy but GCA is a high risk Dx and you should receive well managed care.
Your CRP is way high, mine at it's worst was 130 and I thought the pain was unbearable. I cannot imagine what 260+ feels like. If you have not already please eliminate refined sugar and high carb foods from your diet. Carbs like super-processed foods, bread and pasta are big no-nos. These are preferred foods by your inflammation and you are only feeding the inflammation beast when you eat them. You could read up on anti-inflammatory diets, there are many books written on the topic. My bottom line was the sugar and carbs needed to go. The first month of eliminating refined sugar was hard to do. After the withdrawal I really don't want desserts and candy, even when I look at them. We are what we eat!
I wish you did not have this problem. I am sure it is very concerning and somewhat scary. Please know that there is a wealth of help here in Mayo Connect. Learn to use the Search feature both for the PMR area as well as all of the Connect chats. Often they can help you without waiting for answers from us. Always check the posting date since PMR/GCA protocols have changed over the last 5 years.

Have you seen an opthalmologist yet?

Hi @momac59, So sorry to hear you are also experiencing some vision loss in the past six months. I've had polymyalgia rheumatica (PMR) twice and was always worried about GCA but fortunately never had any of the associated symptoms. I did a search of Connect using "is it GCA" and thought you might like to scan through the results while you wait for others to respond - https://connect.mayoclinic.org/search/.

I'm tagging @tsc who has also experienced GCA to see if she may have some thoughts or suggestions.

Potential for vision loss has always been my A-#1 concern with GCA!! I was tentatively diagnosed w/GCA (never w/PMR) in July 2025; biopsy confirmed Dx @ end of November. My Prednisone dose is currently 40mg...after what my Rheumatologist labeled a "relapse" after tapering to 30mg. My insurance finally approved Tyenne and I expect to begin self-injections in about a week.
momac59, you mention steroid injection, are you also taking daily Prednisone? Any chance of seeing a Neuro-Ophthalmologist? I am so lucky to have the most exceptional Neuro-Ophth on my "care team." She has been amazing and laser-focused on the health of my eyes...even more than my Rheumatologist!

With possible GCA high dose prednisone may help
while having the urgent ophthalmology testing.
Ultrasound scan is less helpful after prednisone
therapy is established. Temporal artery biopsy is the
standard diagnostic procedure.

Yes, have both GCA and PMR and was hospitalized two years ago for it, with the left eye, and jaw heavily impacted along with shoulder and pelvic girdle pain. It’s started with high fevers, night sweats until I was treated with Prednisone tapered to weekly Acremrya injections. Not many issues except no appetite and lingering nausea, headaches- side effects you read about. My doctor is awesome, and she spoke with me at length about slowing down, living with space and grace. Right now, I am embedded in a support system to help with the depression. Get your ESR levels down and you’ll feel better.

When I was diagnosed with PMR and GCA, my rheumy put me on 60 mg. of Prednisone daily, immediately. I was at that dosage for 6 weeks and then began my taper. It took me about 16 months to taper off completely without flares, with the help of Actemra.

@johnbishop
Hi @momac59, I had PMR and GCA, undiagnosed for a year. With the GCA, three incidents of visual disturbance in my right eye which lasted about 10 minutes. I could only see white out of my right eye. I had a temporal artery biopsy and was positive for GCA. I started on prednisone 40 mg and tapered every two weeks. I was okay for a year, then relapsed and did the prednisone treatment again. A doctor friend told me if I ever had visual disturbance again to go to the ER immediately.
Did you get a temporal artery biopsy?
I hope you can get to the bottom of this and get effective treatment.

@ceedub I recently went off Tyenne because of side effects. Please log your problems so you have the most accurate information for your doctors should a significant problem arise. I was on Tyenne from mid-January until mid-March when I had a CT Scan that Dx diverticulitis so just know the problem may take weeks, months to materialize. Read up on the known side effects and start there, then add any other problems/concerns you notice. I was also having BP issues and my endo found my thyroid numbers were changing, another known side effect due to drug induced changes in your liver.
I was sad when I was taken off Tyenne because it was making me feel great. I felt better than I have felt in 7 years so I was very disappointed. We are now waiting for the Tyenne to get out of my system before we start the next drug in an effort to find a drug I can tolerate.