My gp is organising tests for vasculitis,very worried,any advise would be appreciated,
Vasulitis: My gp is organising tests for... - Kidney Disease
Vasulitis
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HOLLYANNhopefulanna
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I was just checked for Temporal Arteritis (a type of vasculitis) a few weeks ago as I had severe pain in my right temple during Covid at the beginning of June. According to the blood test I don’t have it but I still wonder about it because I have quite a few symptoms.
There are a few different types of Vasculitis, one of them being GPA. That is the type I have. Most GPAs are ANCA associated and ANCA is a blood test that doctors can do to see if it's active in your body. Prior to me being diagnosed, I saw 4 different types of doctors and went through a lot of tests but none of them were for ANCA. I had a Gallium test, PET scan, CT scans, and a bunch of different blood lab tests. GPA is fairly rare and most doctors don't know the symptoms to look for and don't think about it when diagnosing. It's usually too late by the time it gets diagnosed and someone will have kidney failure as in my case or severe lung damage. Please have them test you for ANCA and have a complete metabolic panel blood test to check your kidney function.
HOLLYANNhopefulanna in reply to
So sorry to hear this,I will mention this WHEN I eventually see aspecialist,how long have you had this and what is the prognosis for you, please try to look on positive side, I do not know very much about vasculitis,so I am very worried at the moment,but I wish you well,all the best to you for the future,
in reply to HOLLYANNhopefulanna
I was diagnosed in 2017. I was given 3 different drugs over a 2 year period and was declared in remission in 2019. It took a toll on a lot of my nerves and joints. I have severe neuropathy in my feet and I have osteoarthritis. The worst part is that I had stage 5 kidney failure when diagnosed and have improved to stage 4 for the past 4 years. If you indeed have ANCA GPA, you can’t wait to see a doctor or it could be too late. If you have to, find a lab that will perform an ANCA blood test and pay out of pocket.
