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Mitoxantrone Therapy

I had Mitoxantrone Therapy at the National Hospital for Neurology and Neurosurgery in January and April 2010. On both occasions, I was given Cyclizine tablets after each infusion for the possible side-effects of Nausea. I was meant to have 8 infusions in total (for 2010 and 2011), but I decided to opt out after 2 infusions, as I had a problem with mucus blocking my nose and saliva blocking my throat (it's still a problem now, but less of a problem). Mitoxantrone Therapy is meant to slow down the progression of Multiple Sclerosis.

Has anyone ever had Mitoxantrone Therapy?

Hiya

I had Mitox coming up to 2 years ago.  1/2 way through I started Copaxone injection.  I had it as Rebif stopped working for me.  Unfortunately (for me) I had a big relapse just before the 3rd lot of Mitox, which took me alost 18 months to get over.  I still carried on and completed the rest of it though.

Since then I've had a couple of smallish sensory relapses but not big horrible ones like I'd had before.  When I was first diagnosed I had 5 relapses in 6 months and when Rebif stopped working I had 3 in 3 months, so something must be working for me.  I often feel like the Mitox didn't really do much for me and it's actually the Copaxone that's working, as I have lots of things that effect me on an almost daily basis (wobbles, memory, fatigue etc) but, I don't know if it's just that I expected a bit too much from it.  My neuro said that these are things that I may just be stuck with as that's the nature of MS and as long as I'm not relapsing all the time, it's all doing it's job.  Of course, unless I stop taking Copaxone, I won't know if the Mitox did anything and I'm not really willing to test that out.

I was given the choice of Mitox, Tysabri or Campath and I now wish I'd picked Campath (Tysabri scares me more) but I'm not going to beat myself up over it, it works really well for a lot of people (my neuro said I was very unlucky that I relapsed after starting the treatment).

Sue

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