Should I have temporal biopsy for GCA even after 8 weeks prednisone?

I'm at a similar point in my treatment. I started Actemra injections in August 2024. I'll start taking 6 mg of prednisone tomorrow. The difference between 60 mg and less than 10 is really amazing. I'm like you, where I feel as good as I did before PMR, which was almost 2 years ago. I'm jogging 30 minutes every other day mixed in with walking. Plus I'm sleeping really well, which wasn't happening since the start of PMR and GCA.

Can you tell me what the headaches were like? Were they all day long? Did you take any OTC pain reliever ? How are you doing now? No flares or relapse?

I am a person that rarely gets headaches, so I was quite surprised when the headaches came on and lasted all day long I started taking maximum doses of extra strength, rapid release Tylenol, which did nothing. First Step was to my general practitioner. He gave me some migraine medicine that did not help. He then referred me to a rheumatologist who diagnosed me with GCA. . I did not have a biopsy or an ultrasound. But did have a brain CT scan. Dr. took one look at me saw that my temporal arteries were swollen. I had jaw pain & scalp pain, I was very fortunate that my vision was not affected, Doctor said “I know what is wrong with you” he put me on prednisone and within three days the headaches stopped. They have never returned. I had to continue on the prednisone for the polymyalgia pain . However I was on prednisone for eight months and was able to get down to 0 mg by June 2024 with no help from Actemra. The headaches have never returned🙏

When I was first diagnosed with PMR I had symptoms of headaches and blurred double vision. My Rheumatologist immediately put me on 60 mg of Prednisone suspecting that I had GCA. After that, I did have the temporal biopsy which I feel is an invasive procedure, but I felt it was necessary as well since my PMR pain was off the charts. Personally, the consequences of blindness was a risk I was not willing to take, and that is why I had the biopsy done. Reading your concerns the only thing that I was thinking about was why your doctor put you on such a low dose of Prednisone? Even when I researched the dosage for Prednisone for GCA it states mostly the 60 mg dose. Some info does say 40 - 60 mgs, but I was glad that my doctor was proactive in treating me aggressively at the time. The second question that I have would be how long have you been experiencing temporal headaches? My Rheumatologist told me that GCA needs to be treated within 10 days of onset of symptoms, otherwise, it could lead to blindness. What are your thoughts on this?

Personally, I wouldn't BUT go by your doctor's recommendation. I had a double after being on Prednisone for a few months at the insistence of my Rheumatologist, despite being gently steered away from it by the vascular surgeon immediately prior to the procedure. The vascular surgeon indicated that not only can long term Prednisone use effect the result but the fact that a biopsy only tells whether GCA is present in that particular section(s) of temporal arteries makes the biopsy(ies) inaccurate. But hey I now have two Frankenstein type scars on my temples, which makes for a great Halloween costume 🙂

I was originally diagnosed with PMR on Feb, 17th , 2025 after my complaints of stiffness and headaches and muscle pain which my PCP thought was related to my starting a statin. Finally, I got in to see him and told him I would not take statin any longer because I hurt everywhere and that's when he did blood tests for PMR and RA, etc. He decided I had PMR and set the dose of Prednisone at 20 MG,,,,I made appointment to see Rheumatologist but never got in until 7 weeks later. I agreed to ultrasound which I just had this past Friday and was NEGATIVE. Rheumatologist just lowered me to 15MG prednisone....Headaches have been better these last 3 days, but I carry 40 MG with me just in case.

I wish I knew about the ultrasound because at least that is not invasive. They didn't give me that option unfortunately. Glad to hear your results came back negative. Sound like your on the right track. Best of luck.

Medical profession doesn't necessarily think of the patient....they think of TESTS! I did the research. The school of thought now is that MRI, ultrasound, PET scan etc can be as informative as biopsy and less invasive for patient. For anyone reading this and having to have a biopsy, instead of main temporal artery biopsy, I read that the parietal branch of the temporal artery is much more safe ( not close to facial nerve) and less disfiguring for patient. Ask your care team about it

So happy for you that your GCA resolved so completely and quickly.....others are not so lucky.
Best wishes for your continuing good health!

You have to be proactive and look into things yourself....that's what I did.