Hi everyone. I am currently having mitoxantrone and am not sure it is elping.My husband thinks I am worse. I have only had 2 infusons, and my 3rd is next week. and he thinks I shouldn’t go. Has anyone here any experience of it?
thanks,
:Lynne x
Hi Lynne,I had Mitox six years ago.I was having half the lifetime allowance in three infusions.This sounds similar to yourself.I had no troubles at the time of the infusion,and I might have even had IV steroids at the samre time.I didn’t get the blue piddle until day two and it was a little disappointing.
I felt no particular effects and continued my downward spiral,and I’m still on it today.If you don’t want to go don’t,just let them know.It appears to be quite rare and I think it’s one of those things were you never actually know what it’s done.However,there was a poor bloke on Ye Olde Boreds who had his heart wrecked by the treatment.That’s why you have the heart scan,and sign all the disclaimers.
If you are that poor bloke or know anything about him,I’d like to know.That could have been me.
Wb
Hiya
I had Mitox and just before the 3rd dose I had a really bad relapse. I continued with it and went on to go on Copaxone before the last dose of Mitox. I’m still on Copaxone now.
My neuro says I haven’t had a relapse but, since having Mitox but I think I’ve had about 1 a year, which other neuro’s said were relapses and gave me steroid for. I haven’t had one this year so far, so fingers crossed I may get away it this year.
I do suffer from syptoms caused by damage done in previous relapses but it’s pretty steady and not getting any worse but, it was never going to fix that.
I’m glad I had it as I was relapsing every 6 weeks when diagnosed and when Rebif stopped working so life now is much better. However, I’m not sure if the Mitox is responsible for that, if it’s the Copaxone or if it’s as planned, the combination of both.
I think you should speak to your neuro about it and make sure all your concerns are addressed before you decide which way to go.
Sue
thanks,I am going to stick with it.Since I posted it has occurred to me that my bladder has improved a lot, and I am having less urgency. I am hoping I am going to see some more improvements. Fingers crossed! Lynne x
Hi my consultant is trying to get me to go on this drug but I am finding that there is very little information on the web regarding its use by people with MS x Is there anyone out there that it has/hasn’t worked for as am really not sure about going on this as it seems a bit severe but having said that maybe my consultant thinks its the only course of action. I really do not know what to do so am looking for any advice people can offer eg. success/unsuccessul stories or anyone that has side effects.
All information would be greatfully received xx
Hi,
I had Mitox 6 years ago and it was the best decision I made agreeing to go on it. Since taking it my MS has remained in remision and I barely get any symptoms. I was told of the possible risks but I agreed to go on it as my MS was so active.
Hi,
I had Mitox 6 years ago and it was the best decision I made agreeing to go on it. Since taking it my MS has remained in remision and I barely get any symptoms. I was told of the possible risks but I agreed to go on it as my MS was so active.