Has anyone had and survived Vasculitis and recovered? Serious answers only.?

On Memorial Day, two days into a migraine type headache, I found a purple mass on my right temple. Knowing that a headache is the bodies way of saying that something is wrong, I went to the Emergency Room. I was told after a battery of blood tests that I had a rare autoimmune disease called Vasculitis and it was affecting the brain and the right eye. My level of inflammation was very high, so I was put immediately on Prednisone, which I have been on for four days now. Now I face the first of what may be two biopsies soon and I am understandably afraid, mainly of the fact that my immune system is attacking my body and that long term steroids will lower it. I'd like to know if anyone else either has or is going through this. I have faith that I will make a full recovery, but am scared at the same time. Is this normal or am I crazy? I'm trying to keep the best attitude possible in spite of the fact that it's affecting my brain and right eye.

I was diagnosed with a form of vasculitis almost 20 years ago. It can be a symptom of many autoimmune diseases. There are many immunosuppressive medications to control symptoms and you should feel better, even though the side effects of the medications are often one more thing to deal with. I've never gotten off prednisone completely, but have gone from 60 mg. a day down to 5 mg. unless I have a major flare. I've been on cytoxin, imuran, methotrexate, remicade and am now using Enbrel injections. I've continued to work and rest whenever I can. Keeping positive, I believe, is half the battle. Best wishes to you. You may want to refer to the websites of Mayo Clinic, Cleveland Clinic or John Hopkins.

Good for keeping positive. My dad was diagnosed with vasculitis in November 1991. I wasn't aware at the time of the severity because I was only 11. He was in a wheelchair because it was too painful to move but fortunately for him, it was primarily the blood vessels just beneath the skin that were affected. He had to go through a large battery of tests but now, 16 years later he is fine and in need of no medication. It lasted about 6 months for him before remission.

I think it really depends on what organs are impacted though and if it is self-limiting. Of course the brain is not a positive organ to sustain narrowing of blood vessels and inflammation but plenty have pulled through especially if caught early enough and ended up living full, normal lives eventually without medication. Of course since it is an immune reaction, immunosuppression will be good for you.

My dad's experience ended up positively and I hope yours does too. It is normal to be concerned when vital organs are in question but I think you have the right idea about keeping a positive attitude. Vasculitis is not cool, but I have one survival and remission story and I only know one person that has had it. I guess that makes it 100% so far in my world. ;) Good luck to you and feel better.

First congratulations at getting it seen too fast! Yes the prednisone will kill the inflammation in the blood vessel walls and you will have to wait for the biopsy, just to rule in vasculitis and rule out other things. Once they know what it is then they can treat. I have RA and Vasculitis is part of this condition, have flares followed by remissions. Therefore when you flare they treat and push you into remission and that can last years. They will also once confirmed tell you about 'life style' change, do not smoke, watch the weight, watch the cholesterol. While I understand your FEAR, in six months time you will wonder what all the worry was about.