Temporal Artery Biopsy VS a color Doppler Ultrasound for GCA diagnosis

@lilyonm Good morning -- I am frustrated today because I might be have a reaction to the sutures in the incision for my temporal biopsy! I was wondering how things turned out for you and what decision you arrived at.

I realize the urgency for diagnosing GCA , but what was the likelihood of my minor and fleeting symptoms actually being GCA? I wished I could have discussed with my PCP , but he was on a 3 week vacation and the Rheumatologists was going on a 3 week vacation! Oh well.

@lilyonm Good morning -- I am frustrated today because I might be have a reaction to the sutures in the incision for my temporal biopsy! I was wondering how things turned out for you and what decision you arrived at.

I realize the urgency for diagnosing GCA , but what was the likelihood of my minor and fleeting symptoms actually being GCA? I wished I could have discussed with my PCP , but he was on a 3 week vacation and the Rheumatologists was going on a 3 week vacation! Oh well.

@nyxygirl I am SO sorry to hear about your experience. I read a couple of comments from people who had the biopsy and one person said they looked like Frankenstein and should have had a plastic surgeon do the stitch.
Both the ENT (ear nose throat) Doc and Rheumatologist have said that since I have been on P for 10 weeks that a biopsy will not prove effective in diagnosing GCA. I, too, wonder if some of my weird symptoms (fatigue, headaches, some jaw pain) have to do with GCA. I had a full ophthalmology exam and my optic nerve shows no sign of GCA. Oh, and the doppler US order was for my carotid not my temporal so that was moot. (TY for the link to the fast track US info. The machine here does meet the criteria for identifying GCA. However, the Ultrasonographer said in her 30 years of practice she has never had a positive US for GCA, and she only does 1 every six months. Low pool of patients)
One woman on this group said her GCA was identified by a PET scan. She had subclinical indicators. Oh, and another person had GCA identified thru a scan after a motor vehicle accident. More costly tests but possibly more accurate.
Have you had your iron and ferritin levels tested? My fatigue is due to low iron and I have just started a supplement. My platelets are high due to low iron and P. Inflammatory conditions wreak havoc on the entire system and it is difficult to identify which symptom is being caused by what condition.
I have an appointment at Mayo in Scottsdale in 2 weeks. I will let you know how it goes. Til then watch for symptoms of infection on the suture and get it tended to ASAP. The conditions were are living with cause us to be more susceptible to infections because of our compromised immune systems. Peace.

Hello - thanks for all that info and your kind concern for my incision. Interesting that you have access to Mayo Clinic in Scottsdale ! Your comment about PET Scan made me recall this abstract from the College of Rheum Meeting last year ( 2023)

good luck with your appointment !

Access to Mayo was quite easy. There is an online form to request an appointment for any of their 3 locations. It was followed up by a call with an appointment coordinator. My insurance is with United Health Care (not the AARP policy) and Mayo is in network. I do have a referral from my primary care doc, too, which was not needed. Had a 2nd appointment with the rheumatologist here in Santa Fe Thursday (the only one...) and told her I was going for care there. Was not met with much enthusiasm. A story for another time. Will let you know what I learn at the appointment. Cheers!

I had the absolutely clear cut text book symptoms. I went to an ophthalmologist and they didn't see any eye issues. I went for an ultrasound and they saw no halos. I went for the biopsy and it was negative. However, immediately following the biopsy, my symptoms disappeared. I'm just telling you what I went through so you can have another data point.

I was diagnosed at Mayo Scottsdale. The Mayo practice seems to be spend as much time on your condition as possible and run every test they can access. Its all about the patient. So they listen very carefully to the clues you give them. i would write down whatever your feeling to discuss. I live in the area so a little easier for me. They also prefer their testing.

@tuckerp Was your diagnosis PMR or GCA? Or both? Mayo did request any lab work I have had done within the last year. My PMR did not come on until late May 24 but I have had other health issues and lots of labs over the last year that I felt pertinent to include. Thanks for your feedback about your experience at the Mayo Clinic.

I had self diagnosed myself with PMR and started on Dexamethasone. Worked in 4 hrs. Pain free. I then went to my PA and I gave her this list of tests I wanted to run. I got this list off a PMR facebook site. She ran the list:

1.. CBC with DIFF
2. ESR
3. CRP, HS-CRP **
4. HBsAG
5. Interferon Gamma, Serum
6. Hep -B
7. Anti-Chromatin Ab, IgC (RDL)
8. CCP Antibodies IgG/IgA
9. 14-3-3 eta Protein
10. Antiphospholipid Antibody APS, APLS
11.RF test
12. ANA - antinuclear antibody
13. Aldolase - With CK, ALT, AST
14. Interleukin 2 and 6

I had these test done at Lab corp. I took them with me to my Mayo appt. He then ordered a CT scan of my body, chest x-ray, and PET scan, Ultrasound of my thyroid and carotid, All my test results came back negative. (except blocked carotid) I complained to him of headaches and he ordered a temperal Biopsy. That was negative. He said already being on steroids for about 5 weeks before I saw him made the tests difficult. But he agreed that the fact the steroids worked was most likely PMR. Some of these tests he ordered just from talking to him about how I felt. Thats why I mentioned to make a list. Its easy to forget during the appointment. If you have recent tests medicare might not pay for duplicates. So best to take what you do have. I saw the Dr once. first appointment was about 80 minutes. I then went for a 30day followup that could have easily been done on video conference. He referred me to a cardiologist and a urologist. I still see them. I started steroids in Apr 2021 and was off by Nov 2021. Just PMR no GCA.