I am 32 years old of Ecuadorian descent and live in New Jersey.
On June 13, 2001, I had a fever and a headache. Nothing that seemed out of the ordinary. On June 18th I went into the hospital. They originally thought I needed my gall bladder removed. On the operation table my heart rate shot to 168 so the procedure was canceled. Fevers (106), severe muscle aches, etc., followed and I was in ICU for 8 days. They could not get the fever down. I had infiltrates in my lungs, high liver enzymes, and pericardial effusion.
All the tests were coming up negative. After 120 mg of Solu-Medrol (steroids) the fever finally broke. I spent 28 days in the hospital. The rheumatologist diagnosed me with vasculitis. He had no proof despite the liver biopsy. I went home on 60 mg of Prednisone.
Unfortunately, this doctor did not give me much information either on the diagnosis or the side-effects of the steroids. Thank goodness for the Internet. Thanks to the Johns Hopkins website I found out that there are many forms of vasculitis and they should not be treated indiscriminately.
Since July I have been a patient at Johns Hopkins (3 hrs away) and we brought me down on the prednisone since there was no evidence of vasculitis. When I came down to 5 mg in December I did have a flare up and stayed at Johns Hopkins for a week. My doctor had just gone on vacation. The others did a skin biopsy and because of the spiking fevers determined it was Still's disease. Similar symptoms. I was put on Imuran and other anti-inflammatory drugs as well as going back up to 40 mg of prednisone.
On January 11th I was rushed to the hospital. It turned out I had a severe allergic reaction to Imuran as well as another flare up.
I had seizures, my breathing stopped and I almost died in my mother's arms.
I have no memory of the first and a half I spent in the hospital. I spent 20 days there (out Feb 1st). Thanks to an arteriogram we found some aneurysms and diagnosed PAN.
I am also waiting on the results of a nerve biopsy to confirm. Just started the drug Lupran to help my ovaries since I will be starting Cytoxan. I've only been married 2 years and am hoping to have a child someday despite the illness and treatment. Thanks for "listening." I can't tell you how scared I've been but am lucky to have family and friends.
It still helps to find others who can relate to what you are experiencing. I also hope to find a local support group.