Posted 4/27/2007 12:29 PM (GMT -6)
Welcome to the forum. I'm sorry your going through this...((Hugs)). I came across this site when I was researching Lupus Pneumonitis and Cytoxan Infusions over 2 1/2 years ago. I agree with the others about talking to your doctor about your fears of this dx and the treatment options.
When I was dx with lupus pneumonitis I was very scared too from all that I read about it and the side effects of Cytoxan. I was very hesitate to get the treatment but, my rheumy insisted that it was what I needed to survive or prevent a lung transplant.
With my very first cytoxan treatment I was admitted to the hospital over night for evaluation. Apparently they base the dose on your height and weight. I had a bad reaction from that treatment which caused severe chest pain and my heartrate to drop in the low 30's. The dose was too high for me even though it was right for my height and weight at that time. Of course, they checked me from top to bottom to make sure I was ok otherwise. I was very weak from that treatment and reaction and slept alot over the next several days until my HR got back up. That scare prevented me from going forward with the treatments at that time but, my lung functions were dropping rapidly so I decided to try it again.
Almost 6 months later I got my second treatment. I was admitted to the hospital again because of the reaction from before but, was given a lower dose and it was much better. After that, I got them on an outpatient basis in the Oncology dept once a month for the next 5 months. The main side effects that I had were some nausea, flu-like symptoms and weakness for a about 5 days after each treatment. Also, some hair thinning during the course of treatments.
In my case, I think the treatments were well worth it. My lungs were completely clear after the last treatment and I could breathe so much better.
I know this is very scarey for you...It was for me as well. Read and research all you can about this, talk to your doctor and weigh all the pro's and con's. I will help you in anyway I can as well as the others. If I can answer any questions for you I will be more than happy too.
Good luck with your treatment and we will be here to help you through this rough time. Please take care and keep us updated. You will be in my thoughts and prayers.
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Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
JOB For he wounds, but he also binds up; he injures, but his hands also heal.