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
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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 .
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.
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