Hi I’ve started mitoxantrone lots of mixed feelings about it. Has anyone any experiences they feel can share. Sam x

Hi Sam

I had Mitox a few years ago for very active RRMS, 1/2 way through I started Copaxone and I’m still on that (I’d been on Rebif before but it stopped working). I didn’t think it had made a huge difference to me but it turns out that it did. Unfortunately I had a bad relapse just as I was due my 3rd dose of it and that did some damage which I still sometimes struggle with. My new neuro has told me that the relapses I’ve had since the Mitox, haven’t really been relapses, they’ve been the damage already done playing up. He said that in his view the Mitox did it’s stuff and stopped the relapses in their tracks, it doesn’t fix damage already done but helps prevent new damage.

So all in all it worked for me, just not the ‘miracle’ I’d expected. At least I’m not having very frequent relapses which would be doing new damage. I think I was expecting to feel totally normal after it, I felt great after the 1st and 2nd doses, but since the big relapse I’ve found a ‘new normal’ which is wobbly, forgetful, fatigued etc. I’m still glad I had it as it though, just wish I’d been able to get it sooner, before so much damage was done.

If you have any specific questions, feel free to PM me and I’ll do my best to help.