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Adjusting to life with temporal arteritis

Polymyalgia Rheumatica (PMR) | Last Active: Jan 13 9:52am | Replies (217)

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@aberon22

Likelihood of temporal arteritis? My dad - who is 94 - has been experiencing symptoms for over a month. They involve a headache or discomfort near the top of his head and going down to an area behind his left ear near his neck. We happened to be at a doctor's appointment last Tuesday and temporal arteritis was mentioned. We are in the diagnosis process. The doctor prescribed prednisone. This provided some relief though the symptoms have not disappeared. The doctor also referred us to a surgeon who has scheduled a procedure tomorrow for an artery biopsy.
Is this the right approach? I am concerned about the procedure at dad's age though he is generally fit and active. I am also concerned about his going under anesthesia. There is some history of significant sensitivity and he has experienced both very high and very low blood pressure. I have heard the biopsy can be done with a local but the surgery center seems to be scheduling more extensive sedation.
Anyone have feedback?

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Replies to "Likelihood of temporal arteritis? My dad - who is 94 - has been experiencing symptoms for..."

Hello @aberon22, welcome to Connect. Thank you for jumping in to the discussion about temporal arteritis. I am glad you were able to find this discussion on your own. I understand your concerns about your father and undergoing anesthesia.

While we wait for some of the other members to chime in, would you mind sharing if you told your concerns about anesthesia with your physician and surgeon? Did you inquire about being able to do it with a local because of your concerns with previous low/high blood pressure?

I did tell both the surgeon and anesthesiologist about a sensitivity to anesthesia and that I had concerns about anything beyond local anesthesia. My dad is with a new physician as of last week so last Tuesday was their first time meeting. In the medical history, we did include information related to high and low blood pressure but I am not sure if I related that particular information to the surgeon or anesthesiologist.

@aberon22, you may also be interested in this discussion on Connect: Anesthesia types and effect on cognitive function in elderly persons http://mayocl.in/2jJpbZw

We got through the biopsy yesterday fine with a local anesthesia and some sedation. The procedure took under an hour and dad did not have any dizziness, nausea or other discomfort after the procedure. Results in a few days.

Note that a biopsy is NOT required to diagnose GCA. *Immediate* 60 or 80 mg of prednisone to prevent loss of vision. If the prednisone reduces or eliminates the symptoms in a day or two, this confirms the diagnosis of GCA. In fact, the biopsy may be negative and misleading.

The biopsy is done with a local anesthetic, It is a simple, quick, procedure. But it is NOT necessary to diagnose GCA and may give a false negative, misleading result.

Welcome back to Connect, @masonc. According to Mayo Clinic: "The best way to confirm a diagnosis of giant cell arteritis is by taking a small sample (biopsy) of the temporal artery." The article goes on to say " It's possible to have giant cell arteritis and still have a negative biopsy result. If the results aren't clear, your doctor may advise another temporal artery biopsy on the other side of your head." --confirming what you say.
https://www.mayoclinic.org/diseases-conditions/giant-cell-arteritis/diagnosis-treatment/drc-20372764

Diagnosis is usually made up of several tests as described in the article.

You've been living with GCA for while now. How are you doing? What symptoms or side effects do you find a challenge to manage?

My experience is described in detail, with charts, etc at :::
http://frontal-lobe.info/gca/gca.html I will update it, but with nothing important. I am now at 5 mg prednisone and GCA is not a problem.

I was diagnosed with giant cell arteritis/temporal arteritis over 3 and a half years ago. The steps your dad’s doctor has laid out for you sounds exactly like what happened to me. First I would like to ease your fear about anesthesia. I was just given shots in the temple to numb the area and the doctor took the biopsies and stitched me up. So far that has been the easiest part of this disease. I was put on 60mg of prednisone before I ever had the biopsy and have to say that I felt better within 48 hours. The problem comes when you have to reduce the dose of the steroids. I did fairly well until I got down to 20 mg. After that through trial and error We have learned that if I go down more than 1mg a month or sometimes 1/2 mg I start to have more inflammation and pain. I have been on a new drug for about a year now called Actemra which is a shot one day a week . The theory was that maybe it would allow me to get off the prednisone quicker but that has just not been the case. The up side is my bloodwork has been great while using the shot, but I still have relapse type issues but without the corresponding rise in c-restive protein or seed rate.
I wish your dad all the best

I just had twilight sleep doing mine