Hi everyone,

I found this group a couple of weeks ago and kind of been lurking but I think I am ready to introduce myself and tell my story. I am 62 which sounds so old to me but I feel like I felt 20 years ago. I have always been pretty healthy. I rarely got sick. My experience with hospitals has been 35 and 32 years ago when my two boys were born. Other than that I had knee surgery a few years back.

I work at a boarding Kennel part time or should I say I worked at a Kennel. I haven’t been back since my diagnosis. Around Labor Day the beginning of September I was working extra shifts and felt extra tired. I figured it was just working the extra shifts but I also was dripping wet from sweat which just seemed so odd. I had also developed a bad cough and flu like symptoms seemed to be coming on too. So I called my boss and asked to be covered for the next couple of shifts. I made an appointment with my doctor for the next day. With my symptoms she had me go for a CT Scan of my abdominal and a chest X-ray. The chest X-ray showed a mass in my left lung. My doctor prescribed antibiotics thinking it was pneumonia. The mass did not seem like the normal mass for pneumonia but she went ahead and treated me with antibiotics anyway. I progressively got worse with the cough and weakness and asked my husband to take me to the emergency room at our local hospital. I was admitted after another Ct scan and another chest X-ray of my chest. The mass had grown from a couple of days before. I stayed in for 3 days and felt better so they sent me home. I was fine for about a day and a half and very quickly went down hill and needed assistance getting around the house. I went to get out of bed and slid to the ground and couldn’t get off the floor. I sat on the couch and couldn’t stand. It was the strangest thing! My legs and arms just was not working. I had my husband take me back to the doctors office and he wheeled me into the building. My doctor told me to go back to the hospital but to a different hospital. I was admitted again. This time I had a crew of doctors trying to figure out what was wrong with me. They thought maybe fungal because I worked with animals, or infection. I had another CT scan of my chest and another chest X-ray. Again the mass was bigger. I was still coughing like crazy. I would sweat like crazy and soak my gown and bed. I needed help getting to the bathroom. I have never been this sick in my life. My husband and two sons were freaking out not knowing what was going on. My oldest son is a third year pharmacy student and knows too much for his own good. He was trying to diagnose me along with the doctors. My younger son that is in the military took a weeks leave to be with me.

The doctors at the second hospital decided that for the tests they wanted me to have couldn’t be done there so after 4 days I was transferred to the main campus. After a 4 th set of CT scans and chest X-ray I settled into my third hospital. I saw a ton more doctors along with interns from all areas, infectious disease, cardiology, internal, rheumatologist, Pullmonary. They all had their own idea of what was wrong with me. After a ton of tests they decided to do a scope and get a biopsy of the mass. Through blood work and results from the biopsy and a 5 th CT scan this time of my head they settled on Wegener’s. So after three hospitals in three weeks I had my diagnosis which was pretty quick from the sound of others stories. It made me a little uncomfortable seeing the doctors get so excited about my diagnosis. They started to bring in students to interview me because the diagnosis was rare. They said that all doctors read about it in textbooks but rarely see it. So I was put on Prednisone and quickly felt better. They sent me home and by then it was the end of September.

I have been waiting for the insurance to approve my treatment of Rituximab and finally today the 5 of November I went in for my first treatments. Well I got as far as the Benadryl, Tylenol and steroid. When they started the Rituximab after about 20 minuets I broke out in hives and I started to have trouble breathing and coughing too. I called my nurse and three more nurses showed up. They took me off the Rituximab and gave me more Benadryl. They called my Rheumatologist but of course she is out of town for the week. So now I don’t know what they will do to treat me for the Wegener’s if they can’t use Rituximab. Has anyone experienced a bad reaction to Rituximab? What was used instead?

Well that is my story. Wouldn’t you know I would get something rare and the one drug that is used to treat it I can’t use. Lucky me!
thanks for letting me share
Ellen