Temporal Artery Biopsy VS a color Doppler Ultrasound for GCA diagnosis

Why not discuss it with both specialists and make them aware of your preference for the non invasive testing
first. I would go along with the higher dose until the issue is checked out. Good to research and advocate
for yourself but you need the doctors’ experience in your choice of care. Have you had an ophthalmology
consultation?

Thank you for your reply. When you say both specialists you are referring to the rheumatologist and ENT, yes? No, I have not had an opthamology consultation. Will do. As for the bump in dosage, dang. I don't know how long the taper is off of that. The long term use of P and its side effects are troublesome. I want my adrenals to produce cortisol on their own again. It's all the pros and cons. TY

I had this scenario. Was diagnosed with PMR in April 2024 after tapering off Prednisone 30mg that an orthopedic doctor originally gave me for hip pain. I had increased migraines, left jaw pain (?TMJ), occasional temporal pain to touch, and some subtle changes in my eyesight. I informed my doctor and was immediately put on 60mg Prednisone and sent to a rheumatologist.
Was scheduled for a bilateral temporal biopsy, but after a day at the hospital waiting for the OR to open up, the day ended and no biopsy. So, I requested the ultrasound, which showed hypoechoic wall thickening of the left parietal and superior branches of the left temporal artery suspicious for temporal arteritis. Nothing on the right.
In three months I have weaned from 60mg to 25 mg Prednisone and will continue to lower the dose 5mg every 1-2 weeks depending on my symptoms. I carry 60 mg of Prednisone with me everywhere in fear of any vision problems; I believe 60mg is the recommended dose to take for GCA.
I had been on 20 mg of Prednisone for over a month when they did the Ultrasound and the doctor was afraid it would show nothing.
I was Leary of the temporal artery “gold standard” biopsy and the ultrasound I had did show hypoechoic wall thickening of the left parietal and superior branches of the left temporal artery suspicious for temporal arteritis. so, my doctor treated it like GCA and i was to watch closely for any increase in symptoms with my eyes.
I am now weaning off the high dose steroids…. Waiting for the pain to come back, but so far, have just had a little weight gain, irritability, fatigue, and occasional tingling in my thumbs, hands, and wrists. In April 2024, I had terrible pain, couldn’t roll over in bed, couldn’t get up from a chair, and could hardly pick up my cell phone! Only time will tell with PMR/GCA, so for now….
just rolling with the punches!
Wishing you luck! 🍀

Hello @lilyonm I just had a setback after tapering from 30mg Prednisone ( May 2023) to 0.5 mg in first week of July. At end of June I had a cold with lo fever and started noticing headache and pain in the jaw on the right side of my face. On July 5th my CRP , but not ESR was elevated again. I happened to be at osteopath who examined and manipulated my jaw.
I am aware of GCA symptoms and also knew that there is a GCA fast track clinic at Mass General Brigham. I asked my rheumatologist "what is the protocol I would follow if the symptoms were to worsen or become more frequent?[ we were getting ready for vacation]" well to my surprise she referred me immediately for a temporal artery biopsy ! I thought she would just say keep the phone number for the fast track clinic handy and/or get downtown immediately to the "clinic"

SO -- Where do you live? - I assume that since you are asking , there is someone who is trained to do the GCA ultrasound?
https://www.medscape.com/viewarticle/964298?form=fpf
BTW - and@johnbishop I had the biopsy under local anesthesia by a general surgeon from Salem Hospital ( in MA). The nurse said they do MANY of these ! My results are negative for temporal arteritis. Again, unlike you, I had finally tapered to 0 mg Prednisone . After the biopsy I restarted 5 mg of Prednisone . I couldn't go swimming on vacation because of the incision!! I am seeing rheum Monday . And I did bring 60mg Prednisone on my trip just in case !

Hello. Wow! Thanks for sharing your experience and the link to the MedScape article. I live in Santa Fe, NM. Our health care is nothing like that of the Boston area. We have one rheumatologist. I got in quickly (Monday) for a Doppler US at the radiology department in one of our hospitals. I will ask them specific questions pertaining to resolution. This is not a Fast Track clinic. I have an appointment with ENT on Wednesday regarding a TAB which I would like to avoid, and because of the possibility of a negative reading because of steroids.

Curious: have you had your Iron and ferritin levels tested? Mine both came back LOW. My CRP and SED are elevating not alarmingly but they should be going down with Prednisone.

And your PMR diagnosis was 2023? Did you have any procedures prior to onset? I believe mine was triggered by dental work. I also live with psoriasis (plaque and guttate) that I have managed with diet and supplementation.

Again, TY for your reply. Glad you do not have GCA. Stay healthy and be well. PS I'll let you know what I discover.

I see in the UK that the Polymyalgia Rheumatica Trust has pushed for more ultrasounds to be made available in hospitals so that a diagnosis of Giant Cell Arteritis (or not) can be made on the spot, rather than immediately increasing prednisone to a high dose and waiting to schedule a Temporal Arteritis biopsy to see if you have GCA, which is more invasive. That would be my preference too, an immediate ultrasound and not increasing prednisone so high "just in case", especially if the likelihood of having GCA is fairly low. Different countries and doctors seem to do different things.

I was diagnosed with PMR and GCA in September 2022. I was experiencing sudden onset of vision loss in my left eye. I had a color doppler which was ruled as negative and a temporal artery biopsy which was positive for GCA. There is a high incidence of false neg even with the biopsy. My surgeon said in 12 years of performing TAB my results were his 2nd positive biopsy. Unfortunately, the vision loss in my left eye is permanent.

Thank you for your comment regarding the use of the US and a TAB. I am sorry to hear the vision loss is permanent. I hope you have the PMR and the GCA under control. I can attest to the fact that the condition can be debilitating. Be well.

good morning @lilyonm glad to hear back from you. I was going to wait till my Rheum appointment on Monday to post my experiences with TAB , but your thread was right there when we we returned from vacation !
I looked at my recent physical results - I didn't seem to have any testing for iron or ferritin. I did not have a procedure prior to Dx of PMR in April of 2023. I actually contacted researchers in Italy with question about a correlation between a physical injury ( mine was knee) and PMR and they replied there is not. IS ENT = ear nose and throat ? is this your physician who is handling your PMR?

FYI - this is how the biopsy test results were written and is titled as "Anatomical Pathology"
FINAL PATHOLOGIC DIAGNOSIS:
A. RIGHT TEMPORAL ARTERY BIOPSY:
Medium size artery with no evidence of temporal arteritis. See note.

Note: Elastic stain shows intact elastic fibers, supporting the diagnosis.
However, a negative biopsy does not rule out the possibility of giant cell
(temporal) arteritis, as this may be a focal disorder. The clinical management
should be dependent upon the clinical impression.

needless to say - this is a bit confusing. @ksukraw is the reference to 'focal disorder" why you are stating that there is a "high false neg " even with TAB? I'm sorry about your vision loss ! will reply again to this conversation on Monday.

Wow, this is real good argument to choose the non-invasive ultrasound over the “gold standard” biopsy!
After working 20 years in hospitals and 45 total years in the medical field, I have seen a lot of stuff!
And in any medical scenario I would personally choose the non-invasive method over any invasive technique, especially taking into account any risks to the patient.
Starting a patient on 60 mg prednisone before they have test results sounds ok to me, especially with GCA ‘s impact on our eyesight. It is very important to discuss your concerns with your doctor.