Wearing Me Down

[Lisadoe]

I am a 48yr old female from the US who has been dealing with itchy rashes, disfiguring angioedema, and recurring MRSA infections. I show a diffuse ANA and a chronic urticaria index of 13!! I was on immunotherapy for 2 years to control the outbreaks but it did not help enough for my quality of life. This has been going on for 7 years and still no concrete diagnosis

[Paprika60]

I used to have Hypocomplementaemic Urticarial Vasculitis (HUVS). I had itchy rashes all over my body and a few angioedema flare. It was never controlled well at all despite the fact that I was on 10 to 7 mg. prednisolone along with other immunosuppressants such as MMF or Methotraxate. And they also tried many different antihistamines to calm the rashes. Nothing worked until they tried IVIG infusion as a gamble. The rashes all started calming down in 30 minutes and stopped completely within 90 minutes. This was almost 20 years ago and I had to have five day infusion staying in the hospital to finish the course. I felt like I went back to my old self after two days of infusion. I was in complete remission for about two months then it all started coming back. The therapy should have been repeated for a long period until a complete remission was achieved (I found out years later) but NHS wouldn't approve it. It was one off try to see if it worked in a hope that it would be enough. IVIG is made from human plasma and so very expensive and reserved for only those who would perish otherwise. So I continued to suffer and suffer with poorly controlled vasculitis until it turned into Lupus. I am now doing much better. I am explaining this because it is possible that you may have HUVS. Ask your doctors and also get second and third opinions. I know they have IVIG but your insurance in US may not cover it. Presently one can have the infusion within five hours and it requires two infusions to finish the course. So much less costing for hospital stay. Hope you find an answer. Good luck!!