Oral cycophosimite

[Louzoejf29]

I have had infusions every three months for two years. Not been good over the last in infusion had a shock. It has now been decided to try daily oral cycophosimite. Has anybody experience of this please.

[Suzym2u Moderator Vasculitis UK]

Hello Lou. Where are you being treated? Do you mean that you have been given infusions of cyclophosphamide every 3 months for 2 years - or were they infusions of something else - like rituximab?

John

[Louzoejf29 in reply to Suzym2u]

Hi john

Thanks for replying. I am being treated at LGI leeds. I have had infusions of cyclophosphamide every three months, specialist has been trying to get go ahead for retuximab but I have now been diagnosed has adrenal ineffient and need to get off prednisolone, if I have retuximabe I will still need to have pred before it, whereas with daily cyclophosphamide I will not need pred. I have been on pred. Since 2008. I see the adrenal specialist next week.

[Willow4]

Hi, I took oral cyclophosphamide for over two years without too many issues. It certainly did the trick for me as I've been totally drug free for almost a year. The only real issue I had were cystitis-like symptoms, this has gradually improved over time, so all in all my experience was a positive one. Good luck with your treatment x

[monikagoyal]

I was taking cyclophosphmide orally but i couldn't tolrate it. I started with stomach upsets and diarrhea symptoms,now i am taking rituxan infusion.

[John_Mills Volunteer]

Hi Lou, cyclophosphamide is a very potent drug, with potentially serious side-effects so it should be treated with respect! It does have a maximum "safe" lifetime cumulative dose. Who do you see for your treatment?.

Infusions of cyclo are usually given about 2 weeks apart, not 3 monthly. When you have the infusions, you should have been given Mesna as well to protect the bladder. This is not possible with daily oral cyclo.

BW- John

[Louzoejf29 in reply to John_Mills]

Hi john

When I had treatmens I did have them every two weeks, I also had Mensa tablet prior to treatment and two tablets to take home to have during the evening. I then went around three months before symptoms came back and I then had a further three treatments two weeks apart. My consultant is Dr Bamford in whom I have great faith, I have been seeing him for 15 years.

[John_Mills Volunteer]

Hi Lou, where do you see Dr Bamford. The normal routine is to have 6 or 8 even 10 infusions 2-3 weeks apart. If that is not effective then these days you would normally think about using rituximab. If you can send me your email address by private message I can send you a copy of the latest guidelines for treatment.

BW John