1. < Polymyalgia Rheumatica (PMR)

Temporal Artery Biopsy VS a color Doppler Ultrasound for GCA diagnosis

Posted by lilyonm @lilyonm, Jul 15 1:06pm

Hello. I am new to this group and recently diagnosed with PMR. My blood work (SED, CRP, CCP) are all normal. My ANA panel was abnormal and only slightly elevated. My year-long prednisone regimen began 6 weeks ago at 20 mg and now I am tapering and am currently on 15mg. No body aches and can perform my ADL.

I am concerned that I may be developing GCA (a few experiences of jaw pain, weird headache, and mild vision issues). I have been in touch with my rheumatologist and she wants to bump me immediately to 60mg and have a Temporal Artery Biopsy.

Has anyone had success with using a Color Doppler Ultrasound in diagnosing GCA versus a biopsy? When on Prednisone there is a high likelihood that the results will come back negative for GCA. So in my mind, why should I have an ENT make an incision into my head which is not without risk) to possibly have an inconclusive result?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

tuckerp | @tuckerp | Aug 7 12:18pm
In reply to @nyxygirl "I'm curious about your level of IL6 - was this a 'serum level' of IL6 ?..." + (show)
@nyxygirl

I'm curious about your level of IL6 - was this a 'serum level' of IL6 ? I have read many times that IL6 testing is not "easily' done .......

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Well I went back to my test results for 2021 and found out they cancelled the IL-6. So I cant really tell you. It was a serum test. I had it done at sonora quest. Results listed below.

Interleukin-2 (IL-2) < 38 LESS THAN 38 pg/mL NL
To convert pg/mL IL-2 to NIBSC units (U/mL), multiply the pg/mL value
reported by 0.026. This assay was performed using the Endogen Human
IL-2 ELISA kit.
This test was performed using a kit that has not been cleared or
approved by the FDA. The analytical performance characteristics of
this test have been determined by Quest Diagnostics Nichols Institute
San Juan Capistrano. This test should not be used for diagnosis
without confirmation by other medically established means.

Interleukin-6 (IL-6), Serum Cancelled NL
The specimen for this test was received at the wrong temperature. Test was cancelled

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nyxygirl | @nyxygirl | Aug 29 7:29am
In reply to @lilyonm "@nyxygirl I am SO sorry to hear about your experience. I read a couple of comments..." + (show)
@lilyonm

@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.

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@lilyonm Hello again and all on this conversation -- It appears I am having reactions to the sutures on my face -ugh. @jrcarson38 when I was telling an acquaintance about the saga of my biopsy , she asked about the symptoms: Lo and behold just like you , the symptoms disappeared ! They were fleeting and not that urgent -- I just don't think the immediate scheduling of the biopsy was correct !! : (

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2 replies
karo89135 | @karo89135 | Aug 29 5:17pm

Hi Lily,

This sure sounds familiar. I had immediate onset of PMR after knee replacement. Family doctor put me on 20mg prednisone. Found a rheumatologist who then scared me into risk of GCA and blindness so took 60 mg. prednisone for a while. Took months to get to a low maintenance dose. Was never given an ultrasound option. Gained 40 pounds, skin looks gross, eyes extremely sensitive to light, trouble sleeping…all the side effects of prednisone. Did not have a biopsy since starting the prednisone would have most likely had a negative result. Luckily no diabetes yet. I also went to UCLA for a second opinion but was told Actemra wasn't recommended at that time.
I’m sorry about your vision. I’m glad I didn’t have the biopsy as it can be a difficult and uncomfortable surgery. My only complaint with this rheumatologist is she didn’t taper me down soon enough. She now is in her private, newly opened office…Cash Only! Started Kevzara and now have RA nodules in my hands and wrists so expecting that new diagnosis.
Will see how this new doctor proceeds. This is a lifelong disease it seems so I wish you the best. This org is a godsend for me.
Karo

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tuckerp | @tuckerp | Aug 29 5:40pm
In reply to @nyxygirl "@lilyonm Hello again and all on this conversation -- It appears I am having reactions to..." + (show)
@nyxygirl

@lilyonm Hello again and all on this conversation -- It appears I am having reactions to the sutures on my face -ugh. @jrcarson38 when I was telling an acquaintance about the saga of my biopsy , she asked about the symptoms: Lo and behold just like you , the symptoms disappeared ! They were fleeting and not that urgent -- I just don't think the immediate scheduling of the biopsy was correct !! : (

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My biopsy was negative. As painful as the incision site was for some time, I was disappointed that I had it done. I think the Dr just orders it if you tell them you have any pain in that region. Missing a diagnosis can be pretty serious. Medicare covers it so they just order it. I think on the symptoms we have a tendency to worry things into being worse. I know this is just me speaking but I did the same thing on the COVID shot. My wife has cancer and I thought ok, I cant afford for her to catch COVID it wont be that bad. I never get shots. Got the second booster and had to call emergency. Then 2 weeks later PMR.

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tigre24 | @tigre24 | Aug 30 6:20am

I agree completely… I am in a similar situation but soon having the biopsy. I have read that ultrasound tech niches are the choice… but seems doctors are still stuck on the biopsies. Not looking forward to the double biopsy, as have been on prednisone for a while do results will be inconclusive… but don’t see a way out. Difficult yo comprehend a hold standard that more often than not provides little confirmation.

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lilyonm | @lilyonm | Sep 10 12:17pm
In reply to @nyxygirl "@lilyonm Hello again and all on this conversation -- It appears I am having reactions to..." + (show)
@nyxygirl

@lilyonm Hello again and all on this conversation -- It appears I am having reactions to the sutures on my face -ugh. @jrcarson38 when I was telling an acquaintance about the saga of my biopsy , she asked about the symptoms: Lo and behold just like you , the symptoms disappeared ! They were fleeting and not that urgent -- I just don't think the immediate scheduling of the biopsy was correct !! : (

Jump to this post

hello @nyxygirl. I hope your suture site has healed. My visit to Mayo in AZ was enlightening. The Rheumatologist does not think I have PMR and ordered 2 CT scans (head/neck and chest) which I am having done in Sept (one this weds the other on the 25th). My PA here said PMR is a diagnostic diagnosis not always a lab one meaning that how I presented and how I responded to prednisone was classic PMR while my labs were normal. The primary reason the Mayo Doc said it wasn't PMR was I am too young. I'm 61. Hmm.

So, I am tapering the steroid. Down to 9mg. Fatigue seems to be less and low to no pain. I am having some serious periodontal and teeth issues which I cannot pinpoint the origin. Autoimmune (psoriasis and possible PMR)? Prednisone? Other condition?

Best to you. Be well.

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