Experiences with Cyclophosphamide

[SnowSeeker19]

My Consultant is considering adding a course of cyclophosphamide to my treatment plan.

I am reading as much as I can about it but am keen to know how people felt if they have had the drug.

- how did you feel after each infusion, how long did it take after each infusion to feel better

- did you find it gave a significant improvement to your Lupus

- have you experienced any longer term side effects?

Thanks

[WinterSwimmer]

Hi Snowseeker. I had a course of cyclophosphamide (monthly treatments via a drip administered in hospital) back in 2012. I was supposed to have 6 treatments, but in the end had only 5 because my body reacted quite badly to it. It actually caused the lupus to flare - which is apparently very rare. The treatments themselves were very straightforward, if somewhat boring. I got someone to drive me there because you can never be quite sure how you will react and I didn't want to have to drive home if I was unwell. The first one made me horribly sick to begin with (after about 12 hours) - and subsequent treatments made me tired and nauseous for a week or so. It always felt like I was just recovering from one treatment when the next one came along. The renal nurse who administered told me that people react very differently to cyclophosphamide - she had one patient who claimed to have no reaction at all and always turned up for the treatments and went home again on the bus. The cyclophosphamide did help me even though it was horrid - so maybe you just have to try it and see.

[SnowSeeker19 in reply to WinterSwimmer]

Thank you

[daniel55]

Hi there I had three lots of cyclophosphamide 2 weeks apart but it was quite a few years ago I would have the drip and a drink of something to take but I cannot remember the name(brain fog sorry) to stop my bladder from hemorrhageing then I had one dose by drip each time of methyl pred stopped in over night. From what I remember the soles of my feet always sweated I lost my body hair for many years but not my head!!! and generally felt tired for a while it took a little time to work because my Rheum. thought it wasn;t going to work at first then it did he was going to send me to St. Thomas's hospital in London from Norfolk but didn't have to go in the end sorry can't remember any more hope this has helped and good luck xxxxxx

[WinterSwimmer in reply to daniel55]

That's interesting Daniel - I lost my underarm and leg hair from the cyclophosphamide, and it has never come back. Also - I'd forgotten - but I had a problem emptying my bladder after the first dose and had to go back to the hospital and have a catheter. But it didn't happen on the second or subsequent times.

[SnowSeeker19 in reply to daniel55]

Thank you!