New Member: Hi I am new to the forum because I... - Vasculitis UK

Vasculitis UK

7,783 members6,757 posts

New Member

Dave34 profile image
2 Replies

Hi

I am new to the forum because I have just been diagnosed with Vasculitis. I have been tested, diagnosed and started treatment all in the matter of 10 days! I can't believe how quickly my life has been turned on its head. I had a rash on my legs which lead to having a kidney biopsy which lead to a diagnosis and treatment. The Vasculitis has damaged my kidneys and is attacking all of my joints. I have just had 3 days having steroids through a drip and are now taking them in tablet form, around 16 tablets per day! I am being monitored every two weeks and the consultant says we have caught it early. I think I am going through the spectrum of emotions at the moment not really knowing what is coming around the corner.

Written by
Dave34 profile image
Dave34
To view profiles and participate in discussions please or .
Read more about...
2 Replies
Main1234 profile image
Main1234

Hi Dave , welcome to the group you never wanted to be in. Excellent information/ research about vasculitis via vasculitis uk and an equally supportive face book page. Helpline is also available for support queries etc.

The most important thing is to make sure you have a consultant who has knowledge about vasculitis as it’s a rare disease and complex to treat. I’m sure others with more knowledge and experience will respond to you.

Are you starting any other treatment apart from steroids?

I must add it’s my OH who is diagnosed with vasculitis GPA 4 years ago now .

Chris-Bromsgrove profile image
Chris-Bromsgrove

The good news is you have been diagnosed early and it sounds like you are getting the right treatment for your condition. I started on 3 infusions of Methylprednisolone followed by tablet form. It's a high dose of steroids and it can cause you to have emotional swings (it certainly did for me). Next step will probably be pulses of Cyclophosphamide. Hope all goes well.

You may also like...

A new members question,on Urticarial Vasculitis.

had a similar history to me. I have had Urticarial Vasculitis for around 20 years. ( nothing...

EGPA/Churg-Strauss? New Member, recent Diagnosis

diagnosis in December 2016 and have been in treatment since. Vasculitis affecting both of my legs,...

Hello from a new member

horrendous week with a flare up of hives/urticaria . Been having attacks sine mariund March 2017....

A question on behalf of someone else, asked this morning by email, a new member to Vasculitis UK

I have received an email this morning asking me about counselling. This person has been diagnosed...

New member seeking help ref my GPs belief that I may have Vasculitis (WG).

tests which showed high levels I was recently told by my GP that he suspects I have WG. I have been...