How bad is cyclophosphamide??

[AmyS1]

Has anyone had cyclophosphamide for Vasculitis with relapsing Polychondritis????

[Hidden]

Hi AmyS1, Are you about to have cyclophosphamide? What stage are you at and what type of vasculitis do you have? Which condition did you have first? Was the polychondritis caused by your vasculitis?

I have GPA, otherwise known as Wegener's. I was diagnosed 2 years ago and was put on methyl prednisone and cyclophosphamide injections. Initially, I was also taking 75mg of prednisolone, daily. All the steroids made me feel very much better, so nothing else seemed to bother me. The cyclophosphamide was given intravenously over an hour (I think? Can't quite remember, but it wasn't a long time). I would drive myself home afterwards whilst munching on fizzy sweets (which helped my nausea). I always took a nice cold drink of water (essential to help flush toxins out of the bladder) and a magazine in case there was no one to talk to. The next day,I would feel like I had a bit of a hangover but nothing too dreadful. I was given anti sickness tablets which I took before and then 3 hours after. You will also get mesna tablets, which again, protect your bladder.

It isn't nice and some people report more severe reactions than me. In the end, it wasn't enough for me and I was given rituximab as well.

I hope that helps.

[Tippon]

I had 10 doses of IV Cyclophosphamide for Wegener's (GPA). Mostly it wasn't too bad. Mine also took an hour or so, but I was given a litre of IV fluid first, so it took longer overall. As I remember it, I would be there for a few hours altogether while they were doing my obs etc. too.

The first few doses were fine, but after about half way through the course, I started getting nausea and vomiting two days after the infusion. The nausea wasn't very bad because of the anti sickness tablets, it was more like the feeling you get if you haven't eaten for too long. It would last for an hour or so, I'd be ill, then I'd feel fine straight away and for the rest of the day.

It's worth remembering though that I had serious kidney damage at that point, so there's a good chance that's what caused the nausea and vomiting.

Like Raspberry_Tea said, take a magazine or a book in case there's no one to talk to, and a drink of water to help flush your system

[Hidden]

I didn't have Cyclophosphamide for my vasculitis, but I had it alongside other chemo drugs when I had cancer. As long as you have plenty of water to keep your bladder safe from cystitis, I didn't find it too bad. But I did lose all my hair. But then you expect it with 3 chemo drugs going in one after the other every three weeks for six months. Hope it all goes well for you. xx

[CanaryDiamond10]

I had cyclophosphamide as my chemo agent and it gave me bladder cancer, which I am still fighting . It has returned with a vengeance and been removed over 30 times and I stopped counting there. It was listed as a possibility before I received it but my doctor still thought it was my best option. You're paying for an educated opinion. That's all. I decided to take that opinion. I could have refused that agent but I trusted my doctors education and experience on the matter. I am advised this could continue for the rest of my tenuous life.

I just put one foot in front of the other every day. Literally. I concentrate on exercise and positive thoughts. I watch Victor Borge performances. Again and again. I stay positive. I only allow myself to read this publication weekly because I found it can preoccupy my positive thoughts. My pain level is about a 7+ to 8 every day with Vicodin and Fentanyl. If I can do that much, my goal is satisfied. When things get bad I can actually convince myself I hear my mother's voice sing Doris Day's hit Cay Sir ra sir ra" or whatever will be will be. The future's not ours to see. Cha sir ra sir ra. Obviously I have no idea how to spell that and I don't even care. You know the song. Positivity and keeping stimuli positive around you in music , art, books, culinary arts, pottery anything you can manage and enjoy.

My story isn't necessarily yours ...... so I wish you the best on your journey.

Warm wishes,

CanaryDiamond10