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Think I have Giant Cell Arteritis (or GCA)
Polymyalgia Rheumatica (PMR) | Last Active: Jan 30 8:20pm | Replies (70)Comment receiving replies
I was diagnosed with Vasculitis (Polyarteritis Nodosa) in 2015. Now my rheumatologist suspects I have Giant Cell Arteritis too. I lost vision in my left eye 3 times last weekend, and my scalp is very sore.
I’m now on 60mg of prednisone. :/
My blood tests have always been relatively normal, and that’s a problem. This week I ended up in the hospital. They did a CT scan with contrast, and a brain MRI. Everything was normal. I need to have a temporal artery biopsy. Unfortunately the vascular surgeons are booked way out so I am waiting for a space to open.
It’s tough on doctor and patient when things don’t go by the textbook.
Replies to "I was diagnosed with Vasculitis (Polyarteritis Nodosa) in 2015. Now my rheumatologist suspects I have Giant..."
My temporal biopsy was done by a general surgeon and was scheduled almost immediately once referred by my rheumatologist.
@SusanEllen66 I noticed you had another post on the topic of GCA so have brought this one into the same existing discussion, which you can find here: https://connect.mayoclinic.org/discussion/think-i-have-gca/
Sometimes and perhaps 50% of the time the biopsy is shows nothing. GCA mainly diagnosed with symptoms like you are describing. If the prednisone helps then that’s what it is. I have had GCA for many many years. Ii didn’t cause blindness but I have other odds issues. Unfortunately doctors know very little about GCA. Especially when it involves the tongue.
Susan
I think I have already responded I want to address and it may help for anyone else with GCA. I found a neurologist researched and spent two hours with me looking at scans and info on GCA. I found an article going back years which I have a copy of about a man who went deaf for two days. The only hint of GCA was a high ESR. He was given doses of 60 mg of prednisone and within 48 hours his hearing came back. So when we are told it only happens to the large vessels this is not true because the small veins going into the ear had giant cell arteritis. Had he not been given prednisone immediately he would have been deaf permanently. My situation relates to my tongue which was paralyzed as a result of GCA because in 2015 my doctors had no idea that my curled tongue could be a result of GCA. Honestly I’m not sure if They could have done any more than what they did except to keep me on a higher dose a little longer. Who knows.
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Sorry to hear your news. I also have a form of Vasculitis GPA and even when my blood work looks normal things are not well. Seems to be a trademark of the disease. I wish you health and peace 🙏🏼