I was diagnosed with hypocomplementemic urticarial vasculitis in 2005 after many years of suffering from burning, painful and itchy hives. I suffered joint pain, extreme bone pain, peripheral neuropathy and foot drop. Through the years the flares have manifested in different ways; uncontrollable hypertension, uveitis, shortness of breath, spilling protein in my urine with a low GFR and elevated creatinine, severe headaches and hospitalized recently for an episode of double vision and seeing black spots and elevated blood pressure. I have been on imuran, prednisone, methotrexate, colchicine and cellcept. I was on imuran for 2 years then it stopped working, methotrexate did not work. I have to taper off prednisone quickly because it elevates my blood pressure to 200/120 @ times because I'm also a chronic hypertensive. I've had periods of depression because I felt so alone. People just don't understand what we go through because as they say we "look good ". I work as an RN and have had to take some time off since I can't even do housework without getting shortness of breath. My rheumatologist stopped the cellcept in case that's causing the shortness of breath. This is an awful disease to suffer with because it is so rare and treatment trial and error

1 Reply

  • Hi Lopiper

    I can't give you any medical advice as I don't know anything about your disease - I have Churg strauss disease. I did have severe foot drop but I was lucky as after about a year the nerves did begin to grow back and do I can walk again with v steep innersoles. I think it's really admirable that you continue to work as a RN and I hope that brings you some degree of normality and satisfaction. You do have to cope with a lot of symptoms and I took have felt that frustration when people say - but you look well - when you know things really aren't well. I am treated by a rheumatologist at my local hospital where I also used to work - but I also travel to Manchester once or twice a year to see a consultant that specialises in Vasculitis - and his team. I just wondered if you'd considered trying to find a consultant with a special interest in your condition that could help bring it under control for you? It does help me to go to my local Vasculitis group meetings a couple of times a year when you can actually speak to people who share similar problems. I do hope you get help to bring your disease under control - best wishes Cath

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