Vasculitis and pbc: Has anyone had an episode... - PBC Foundation

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Vasculitis and pbc

4 Replies

Has anyone had an episode of vasculitis due to PBC ?

4 Replies
butterflyEi profile image
butterflyEi

Hi Nickyl

I had to look up vasculitis as I know nothing about it and came across this web site.

vasculitisfoundation.org/co...

If you look at the map it gives an indication of where specialists are to be found.

Just in case it is of any help.

I hope you can find someone to help more.

best wishes

gmo3352 profile image
gmo3352

Hi Nickyl

I have vasculitis, but I am unsure which came first, the PBC or the blood vessel constriction. They were diagnosed simultaneously. I was told that having vasculitis increases the probability of esphogial varices. Because of this, I have an ultrasound or an endoscope every 6 months. My specialist explained that like PBC, it is an acute desease that has no cure, but unlike PBC, there is no known treatment or drug to slow its progression. I would urge you to talk to your specialist if you think you may have it. A little extra monitoring can never hurt! I am doing great, and hope the same for you.

All the best to you!

in reply to gmo3352

Thank you so much for your reply. What kind of vasculitis did you get diagnosed with and how were you diagnosed. Would you mind telling me too your symptoms

gmo3352 profile image
gmo3352

I am so sorry. I have no idea what type I have...I never asked. As for symptoms, I had fatigue ( who doesn't!), headaches, my hands and arms were so weak I couldn't hold a pen or open a jar, my knees buckled without reason, I got asthma, and my leg swelled. Every joint hurt, I felt like I had a forever flu. For tests, they ran a series of blood tests, and did an MRI. I did not have a a biopsy for this, although it was discussed. I was told autoimmune diseases can trigger vasculitis. Have you gone to the Mayo website? mayoclinic.org, They discuss the various types and causes, as well as symptoms and diagnostics....hopefully it will provide the info you need.

All the best!

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