Newly diagnosed. Needing help please.

[Bibi77]

Hello everyone. I'm newly diagnosed with chronic idiopathic urticaria, leukocytoclastic urticarial vasculitis and cold urticaria. I'm on Ozalimutab, Lukair, 4 different types of antihistamines, ranitidine for another effect on the urticaria. I'm just starting Imuran on a gradual 2 week increasing dose and prednisone 50-75 mg daily.

My urticarial vasculitis is not controlled at all and I have acute angioedema and look and feel like roadkill. I itch all over, inside and out. It's having a huge impact on my life. I just want to be normal.

Is there anyone else on here with this? Have you found anything that has worked yet? Anything to cure the swelling or itching? My lesions range from a cm to several inches in size.

I'm terrified of the risks of taking Imuran, but the high dose steroids are having a huge negative impact too, so I have no more options. I have a few autoimmune issues in addition and have already had one battle with cancer. I still have school aged kids, so I need to find a better way.

I would be grateful for any help please

Thank you.

[Hidden]

Hi,

Are you in the U.K.?

Do you see a Consultant with experience in diagnosing and treating Vasculitis?

[Bibi77 in reply to Hidden]

I see an immunologist only at the moment. I see here that some people see a rheumatologist. Not sure if that is who I should be seeing?

[Hidden in reply to Bibi77]

The speciality of the Consultant matters less than the amount of Vasculitis experience they have!

The best thing to do is phone or e mail the VUK helpline and hopefully we can make some suggestions.

Here is the link, my e mail address is [e-mail].

Have they ruled out HUVS and HUV?

[vivdunstan Volunteer]

Just wanted to mention that it will take 3 months or so for your new Imuran (generic name Azathioprine) treatment to be effective. So until then it won't be helping so much, and you will still need steroid cover. So hang in there!

Azathioprine helped me a lot initially. I have a very different form of vasculitis, affecting my brain. Hope you get some relief soon.