Hi I have a qestion, has anyone had IV Cytoxan for a treatment. Please let me know, I would like to know how the treatment worked, or did not work any information would be helpful. Thank you Cathy

I have been on oral cytoxin since the beginning of January 2010 at 300mg a day. It was reduced to 150mg/daily after two months when I was feeling so terrible and had lost 35 lbs. I am currently on 50mg/daily. I have not had IV cytoxin, but I think that may have been easier than daily oral dose. I got no break from it and could barely function. I just started with a new rheumatologist who wants to do a million blood tests and then revisit the cytoxin delivery method and dosage. I mainly have interstial lung disease and the cytoxin has helped minimally.

Hi Cathy I had six doses of cyclophosphamide by IV, spaced a month apart, started last July 09 and last dose Dec 09, the results have been disappointing. The treatment itself didn't have many side effects; fatigue for a couple of days, nausea for a day or two (but i was helped with anti sickness drugs), and my periods stopped (but have since returned). I was warned of hair loss, but didn;t suffer any (thankfully), and you have to take a pill two hours before the infusion to protect the bladder, and then another two spaced out after the infusion. You have to drink plenty to protect the bladder both during and after the infusion. Hope that helps, sorry my reply is so late Ali

Ali, Sfabela Hi and thank you for your replys to my question. I have had two Cytoxan treatments now, and yes it is rough. If this is what I need to do I will do it. Right now it is too soon to tell if it is working, I hope it works Thank you both I am greatful for your insights Cathy

Hi Cathy I hated having the IV's, I would get really upset the day before it was due because I really didn't want to have it done, so hugs to you. I hope you feel some benefit from it. Ali

Cathy - wondering if you continue to do the IV Cytoxan and if it has had any benefit. Did you repeat pulmonary function tests after taking it? My husband will be going for his second IV treatment this week. The pulmonologist told him he will not do another pulmonary function test until he has had three treatments to see if there is any change. Thanks. D.

Hi Doreen,well my experience was not so good. It turnes out I am allergic to IV Cytoxan. I had four of the six IV treatments two went well, and two came with fever, headache and vomiting. Now my doctor put me on Rituxnab infusions, so far so good. My disease as been drug resistant, so I hope this treatment works for me it is still too soon to tell. You asked about my PFTs I had one prior to starting the Cytoxan, and I had one not long after stopping the treatment there was a small improvements. Sadly I was hopeing for more. I hope it works for your husband please keep us posted on how he is doing. Good Luck Cathy