Elle

[Frankiepoos1]

Hi new to the group. Just like to say hello.

[02061949]

Hello Elle, I assume you have vasculitis. The information you will get from this site is wonderful. Just ask a question and someone somewhere will have an answer.

[Frankiepoos1 in reply to 02061949]

Hi yes I have anca positive pr3 vasculitis only diagnosed in August so still new to me hope you feeling ok .

[AndrewT]

Dear Ellie,

First of all a BIG welcome, to our group. I'm sure that you will find us a 'friendly' bunch. I'm sure that with our combined experience we can, at least, have a 'good stab' at answering any questions that you may have. John & Susan Mills, who co-founded this 'Forum'-along with Vasculitis UK, our 'sister' organisation-are both highly knowledgeable.

What type of Vasculitis/Autoimmune condition do you have Ellie? can you give us a brief 'outline' of how it affects you please? Sorry to appear nosey, it is just that there are hundreds (more like thousands) of different types. I myself have several 'uncategorised' strains, of ANCA Vasculitis.

I know that I'm prying again but-what hospital/consultant(s) are you under?

Sorry for all the questions Ellie, it is only so that I (we) can get an idea of your situation/condition/diagnosis. (It's a bit like a ball of string-you can, do your best, to unravel it but it IS far easier if someone tell you were the end is).

Beast wishes AndrewT

[Frankiepoos1 in reply to AndrewT]

Hi sorry for delay I was diagnosed early August this year with anca positive pr3 vasculitis. I am attending Manchester Royal infirmary under a professor Hutchison.i am on cyclophosamide drip once a month and steroids not feeling too good at moment but keeping and thinking positive hope you all ok.

[Hidden]

Hello Frankiepoos1,

Welcome to the group. There are lots of very knowledgeable people here, so if you have any questions about your recent diagnosis this is the best place to be. (Plus everyone is very friendly too)

I hope the cyclophosphamide infusions are going well and you are seeing some benefit.

Are you taking prednisolone too?

I was diagnosed with GPA 2 years ago...things do get better and easier with time.

Have you checked out the pages on the Vasculitis UK website? There is loads of useful information to help improve your own knowledge and educate those around you. There is also a helpline if you need to talk to someone.

Best wishes

[Frankiepoos1 in reply to Hidden]

Thank you raspberry-tea appreciate your comments . I will check out the website and I am gad to hear it gets easier.

[SABG]

Hi Elle,

I so hope your treatment is going OK, I was diagnosed in 1999 and after treatment, not as bad as what you are going through (mine being steroids and mycophenolate mofetil started about 10 years ago as I wasn't treated properly by the RA Consultant I was under as she said I had 'Limited GPA') and I am happy to say I seem to be in remission but then the GPA was not being destructive to my body/organs as it could be...so I feel very lucky to be treated and avoid the worst GPA can do...all thanks to advice from John and Susan Mills. I wish you well and 'Good Luck' does seem to be a bit of a lottery doesn't it in health? Take care x

[Frankiepoos1]

Thank you sabg just trying to be positive but some days are better than others hope you are feeling ok,and thank you for caring.