New App to Support Vasculitis Patients and R... - Vasculitis UK

Vasculitis UK

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New App to Support Vasculitis Patients and Research

Suzym2u profile image
Suzym2uModerator

If you have ANCA vasculitis which has involved your lungs, nose or sinuses, are now in remission, and you would like to be involved in developing this software, please follow this link for more details

vasculitis.org.uk/news/app-...

8 Replies

Hi Suzy, sorry to be a bit thick but l keep forgetting to ask these questions at the clinic, but what is the difference between ANCA and P-ANCA Vasculitis?

Any answers greatly recieved.

Sally

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Suzym2uModerator in reply to Sima1952

There are two types of ANCA , c-ANCA and P-ANCA , c ANCA is usually associated with Wegeners Granulomatosis ( GPA ) and P ANCA with Microscopic Poliangiitis

Is remission defined by no longer being ANCA +

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Suzym2uModerator in reply to Jools52

No , John has never been ANCA negative, always positive and has been considered to be in Clinical remission for many years.

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Jools52 in reply to Suzym2u

Thank you for the reply. I seem to be drawing a blank still and am suffering a lot but I have kind of stopped caring, if that makes any sense ? The worry was making me worse

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Hidden in reply to Jools52

Have you been seen at Addenbrookes yet?

What about a second opinion in Bristol?

bristol.ac.uk/clinical-scie...

Funny you should ask but now not going to addenbrookes as the rheumatologist spoke and wrote to them as is following the advice they gave. I now no longer get to see DR Gunawardena and wonder if he took umbrage at me as,img to go to there ?

I have an appointment at the free London next month to test for periodic fever syndrome but I am suffering though now not saying anything as it's jjsy a vicious circle. I do feel the appointments have a colder feel and that I am not really getting the attention I did but you know, I'm tired of it and of chasing people. For now I will just let things be as I don't really want to see the specialists under doctors as they even go to his room in mid appointment for advice. I am not going to rock the boat and am reconciled to whatever happens. I guess I am just sick of being sick and then I can get touchy and no one needs that

Thanks for asking

well Jools i never thought that sick people can tired doctors. The only Dr. in town San Diego CA able to deal with Wegner's is kind of getting tired of seeing Robert and not able to do much for him anymore; i am happy that we found someone else in Los Angeles more experience since Robert was starting to feel frustrated as well. So I feel you :)

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