IV Cyclophosphamide

[dawncelest]

I did a 6 month round of cytoxin from 10/13 to 4/14 for relapsing polycondritus with overlapping lupus. . It really helped my lung /airway function ,calming down the vasculits in my lung tissue . I was actually able to almost lay flat to sleep it was great but it wasn't enough to stop the inflammation /destruction of my cartilage and now i have developed vasculits in my left sinuse .. my pulmonologist, rheumatologist and now ENT sinuse specialist all agree i have ANCA negitive Wagners and will start a course of RITUXAN next week. . i guess cytoxin is the first line of defense? ? I was on the strongest dose advised for autoimmune diseases ,definitely felt pretty sick, tired and mild headache for about a week. Didn't really loose any hair just didn't seem like it grew as fast. . Hope you're treatment will be successful and ya feel better soon! Xo

[mrtmeo]

Hi Dawn,
Keep us updated on how well your rituxan works and I pray it goes really well.

[lag713]

Welcome Dawn! I recommend introducing yourself and sharing your story in "New Member Introductions" so the welcome wagon can greet you.

[Bloom]

Thanks Lisamac, I will ask next time because my consultant said I would have it every time. The nurse though said I didn't need it because I was only having 900mgs.
mb.

[mishb]

Hi mb (bloom) and welcome to the forum.

I'm glad you decided to write and let us know what is happening.

I have not been on Cytoxan so cannot advise but from what I have read on here over the years, it's a good WG hitter but not for long term use.
I would go with what Lisamac has said. Hopefully the nurse was correct, but no harm in asking again.

[Bloom]

Hi everyone, thanks for all your helpful responses. I have just had my 5th dose of IV cyclo and the side effects get worse with each one! They did start giving me mesna after the 2nd one, because it seems to affect my urinary output for a few days afterwards.
My lung symptoms are hugely improved but I still get painful earache and I still have a runny nose, does that ever go?