Hello, about 8 years ago I had a bypass surgery of my intestinal arteries at the Cleveland Clinic. My doctors there had differing viewpoints on what I actually had that caused all this damage: hepatic artery, carotid arteries, superior mesenteric artery, celiac artery, and aneurysms in gastroduendenal artery. Some said FMD and other said a burned out Takayusus arteritis. It doesn't help when you can't get a definite diagnosis because the protocol is different for each type. I was sent home told to take daily baby aspirin and to to have a cta and ultrasounds of my carotids and mesenteric arteries every 1-2 years. Things have been stable with all that. Just went in May and got the all clear for two more years. Now 4 months later I am being told that I may have GCA. I have a biopsy scheduled for next week of my temporal artery. My crp is 16 and esr 44. I was having eye pain for a few days and some blurry vision a few weeks before that I didn't hone in on because I never suspected vasculitis. I thought sinus infection. Then I started having jaw pain. I chalked it up to my tmd. I went to the dr and she ordered blood work and while pressing on my temporal artery I winced from pain. She sent me to ER to get a catscan and bloodwork. Catscan was clear for any sinus infection or teeth problems. I am in shock that this may be happening again.
Just looking for support and to read about others' stories to help me understand that I'm not alone.
Thank you.
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RiviS7
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Hi and welcome to this forum. .. and no, you are not alone..
Maybe have a look at this link from the FAQs- covers various aspects - and others will be along with their stories - mine is in the link [I have been in remission for 8 years now and feeling good despite an eventful start].
Most of our members are UK based as is charity, but we are world-wide and quite a few with GCA from US. You’ll get plenty of support…from us all…
If you may have had "burned out Takayasu" - it may have been a first round of GCA since they are very similar, the difference is in the extent and what is affected, One lady had had a diagnosis of Takayasu in her 40s and then noticed that the diagnosis on her notes now said GCA. She queried it and was told, under 50 it is called Takayasu's and over 50 it is GCA. So it magically changes in some way!!!!! In the UK it matters more because you can have Actemra for Takayasu's without limit but for GCA you can only have it for a year.
Hi PMRpro. I have heard this too about Tak and GCA. I just hope my doctors at the Cleveland Clinic will start leaning toward vasculitis and not fmd. I had the last stuff at 46 and now at 54 possible GCA.
Alone? Never...when I was diagnosed, by biopsy, in 2019 with GCA, it seemed to be one giant question mark and a lack of information and explanation. By some miracle....sitting in Maine, USA, at that moment....I found this forum~! I gained understanding and support and never felt alone again.
So, welcome, welcome! I found support from people like DorsetLady and jinasc who had GCA and came through the journey, which meant I could do it too. The people here will always shed light on your questions ---- they were and are my best support, and all of us will be here for you!!💞
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