Hello Everyone
I just joined a few weeks ago and have already gotten a lot of great advice. THANK YOU! I've been looking everywhere to see any mention of a disease called Urticarial Vasculitis. This is what I suffer from in addition to Lupus. It is mainly seen in patients with Lupus and is VERY rare. There are two types of this disease based on whether or not you have complement deficiencies (C1q,c3, and c4). Anyways...I have never seen anyone else mention it and I thought I would ask if anyone had it or had even ever heard of it. I have the systemic form of the disease as well but some of its worse symptoms are hives that can cover your whole body and intermittent episodes of angioedema. My lips swell up out of no where about twice a week. I used to have wheezing episodes as well but I have been free from that for a couple months. I've had this for about 21 months although I had many months of a spontaneous remission. I have been told by my rheum that there is little information available online b/c the disease is so rare. I have only been able to find case studies but no real people. I would love to find someone else that has this or has even heard of it.
Thanks
Mary
I just joined a few weeks ago and have already gotten a lot of great advice. THANK YOU! I've been looking everywhere to see any mention of a disease called Urticarial Vasculitis. This is what I suffer from in addition to Lupus. It is mainly seen in patients with Lupus and is VERY rare. There are two types of this disease based on whether or not you have complement deficiencies (C1q,c3, and c4). Anyways...I have never seen anyone else mention it and I thought I would ask if anyone had it or had even ever heard of it. I have the systemic form of the disease as well but some of its worse symptoms are hives that can cover your whole body and intermittent episodes of angioedema. My lips swell up out of no where about twice a week. I used to have wheezing episodes as well but I have been free from that for a couple months. I've had this for about 21 months although I had many months of a spontaneous remission. I have been told by my rheum that there is little information available online b/c the disease is so rare. I have only been able to find case studies but no real people. I would love to find someone else that has this or has even heard of it.
Thanks
Mary