Negative temporal artery biopsy and blood work

Hello,

23 year old male here with head pain over temporal artery for 8 months now without a confirmed diagnosis or treatment plan. My temporal artery biopsy was completely negative without any inflammation, giant cells or panarteritis. My ESR and CRP are normal. The section of artery removed for the biopsy was tender to touch before it was excised.

I have been on 60 mg prednisone per day for 5 days now and feel amazing compared to how I felt one week ago. The muscle stiffness and fatigue and head pain have largely subsided and I have hope and energy and personality again. one section of artery still feels somewhat tender (but much less so compared to a week ago) to touch and when I tilt my head to the right side.

Has anyone ever heard of someone being treated for GCA with a negative biopsy and negative blood work, where the doctor only monitors symptoms and response to prednisone?

This is exactly the situation I am in and it's frustrating to find a doctor that can help me for long term therapy without any scans or tests or biopsies showing that there is a problem. I am considering having artery ligation surgery to cut the artery to stop the pain if no doctor wants to prescribe me prednisone for longer than a week. Has anyone ever considered this ligation surgery for long term pain relief purposes only?

Could this be a form of constant migraine? I do not have nausea or sensitivity to light or sound. I also have no visual disturbances at the moment. I want to try to convince a doctor that my symptoms are real and not made up (why would I be going through all of this if I was not in seriously horrible pain)?

Thanks,

Devin

[PMRpro Ambassador]

Yes - the TAB is only positive in about half of patients and blood markers are within normal limits in 1 in 5 patients. GCA remains a clinical diagnosis in those cases. It is not uncommon in older patients where they are more accepting that someone of that age is likely to have GCA. The value of doing the TAB is that, IF it is positive, it is 100% sure that what you have is GCA. Without that confirmation you remain at risk of a doctor at some later stage denying the possibility of GCA, especially if they didn't see you when it was active.

You are asking a question that is unlikely to find an answer here - certainly in the UK you wouldn't get to "choose" to have such an operation. But do bear in mind that, in doing a TAB, it is in fact an arterial ligation. They cut the temporal artery, remove a section for histology and tie off the ends. I may be wrong, but it is very unlikely that they did an anastomosis.

Your problem with a doctor believing that the symptoms you describe are due to something for which high dose pred is the answer is not one anyone here can assist with - we are all patients who have been there, done that and got the t-shirt. But none of us are under 40 - so none of us can put ourselves in your position since it is far more likely that a rheumatologist WOULD accept you need pred. Though there are people on this forum who developed GCA in their 40s and who were told it couldn't be even at that age. Your doctors have done a lot of investigations - have they done a PET/CT? That seems to me to be about the only thing that would show anything.

You probably need a vasculitis specialist. Keyes provided you with all the links that are available to her and she is part of the helpline team for Vaculitis UK. They probably have far more relevant knowledge than anybody on this forum which is for patients with suspected or confirmed PMR/GCA in particular. But even their expertise does not extend to the USA - the clue is in the name: Vasculitis UK.