Vasculitis UK
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AUTOIMMUNE DISEASE -.So many medical words and phrases I'm confused!!!!

I have been recently diagnosed with vasculitis initially detected through my eyes systemic work up ct scans. Had lung biopsy, still don't know what treatment etc I will need to undergo. Been off work for 6 weeks now due to 2 infections in surgical wounds. It still feels like a long road, waiting on an outpatient appointment to start treatment???. Need. to stop using Google I think

5 Replies

Sounds like a tough time. Good luck. Hope you get a dx soon.


Hi Izzie

Vasculitis UK has a "Route Map for Vasculitis". This explains about vasculitis generally and about many of the individual vasculitic diseases. There are three glossaries - blood tests, drugs and side effects, and some procedures undertaken. You may find the answer to some of your queries in just one document rather than trawling through lots of stuff on the internet (a lot of which isn't always up-to-date and some of it is downright inaccurate). There's also a link to another site (Genetic Alliance) where you will find lots of genetic terms.

You'll find a link to the Route Map at



Well, you've made a good start by finding us! When I was first diagnosed it was years before I found anyone to talk to and when I found this site it was such a relief to be in touch with people who understand. I felt as if I had a huge mountain to climb, but they gradually work out the best treatment for you and things become easier. Don't read all the scary stories on google, just concentrate on being positive! Hope you will be feeling better soon.


Dear izzie,

Yes please do read the 'roadmap' for vasculitis, available 'on-line' or a 'hard copy' for a small fee. Send a message to John, for the exact details.

It can come a quite a 'shock' to find out you are suddenly unwell, with no apparent end in sight.

Good luck anyway



Hi Izzie

So sorry that you are going through a tough time right now. It's quite a shock to begin with but ask your doctor loads of questions - they are very happy to answer them - and ignore the silly 10 mins appointment rule. Things will start to make sense and you'll be surprised at how much you pick up. If someone told me I'd be able to understand blood test results before being diagnosed with GPA I would have laughed but here I am today doing just that. The good news is that vasc. is treatable and once you have found the right balance of meds you should feel much better and hopefully go into remission. Fatigue is tough but manageable if you go with the flow and keep active.

Good luck and I hope all progresses well for you.



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