Diagnosed with Urticarial Vasculitis

[Kareyc]

Hi I am new to the board. I have been diagnosed with UV last month. Started on a high dose of prednisone. I don’t know what to expect. I am concerned that I won’t be able to live a normal life. Can anyone who has UV please give me some hope.

[Kimberleyashe]

Hey Karey C.

There's a very helpful Facebook group for UV sufferers - search for urticarial vasculitis support on Facebook

It really helped me

[Paprika60]

Hi, I am also new here. I have had Urticarial Vasculitis for 17 years. Initially it was UV but a few years later the doctors told me mine was Hypocomplementaemic UV. I too was put on steroids right away and looking back I think this was a short term solution which spelled a long term suffering as it took me 7 years to get off. Back then the only time I had hive relief was when taking up to 7.5 mg and anything lower would bring the hive attack back. The important thing is to find a non steroidal medicine that will put you in remission. In my case, nothing worked. And I think it was because my body got used to steroids at the beginning and didn't react to anything less. I have met only a few UV patients over the years and it seems Hydroxychloroquine works well for both hives and swelling of joints. I am currently on it along with 2.5mg of steroids. I was on Mycophenolate but it made me ill so my doctor agreed to let me stop a week ago. Fingers crossed.

But there are things you can do. Learning how to be calm and emotionally and mentally strong for yourself. And be kind to yourself!! The doctors obviously won't give you anything other than what is available in prescription form. Because you live with your body for 24 hours with hives and the agony that comes with it, you need to find all sorts of coping mechanism that will help.

In my case, I looked into alternative therapies and spent endlessly amount of money looking for a solution. Some works a little bit and some don't at all. On practical side, Aloe vera gel (organic and 99% pure) works to relieve the itchiness to a degree. Chickweed cream works if your hives burn. If your fingers or toes swell (mine did and I had to have my wedding ring cut!) get Balmosa which is creme for Chilblain but it works really well. Since you just found out, my guess is that your hives are very itchy but not blistering? The hives do change its symptoms greatly as time goes. In my case, I used to put hot water bottle on top of itchy area (when the hives are about to erupt) and sometimes this prevented a bit or helped with itching. You need to find out what triggers it. In my case, it was any sort of chill, tight clothing (socks!) and dampness. With some people it it hot weather and etc or even food. I do hope it helps you to read this and do get in touch if you need more info. I have gone through four different hospitals in London in search of the right doctor in the last 17 years! The main problem is that UV is rare and therefore there is not enough trial or research. I am waiting for some sort of gene therapy trial! If all the regular drugs the doctors use don't work on you, they will offer some sort of antibody treatment. But probably not yet. I have had a few- one being IVIG which is taken from human blood and Rituximab which is part synthetic. I did well with the first one and had horrible effect from the second. So I am staying well out of it if I can help it. I have once heard a case of IVIG putting a UV patient on a permanent(?) remission. I think it all depends on the individual. In many case it helped for about 6 weeks only and all came back.

Don't lose hope and please stay strong and brave!

[Hidden]

Hi,

It would be unusual to treat Urticarial Vasculitis with only prednisolone and not other immunosuppressants and anti histamines.

Are you seeing a Consultant with knowledge and experience in diagnosing and treating Vasculitis as that's what makes the biggest difference?