Multiple Sclerosis (MS) Support Group

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Brain & Nervous System
/ Multiple Sclerosis (MS) Support Group

Mitoxantrone(Novantrone)

PharmDFighter
PharmDFighter
Does anyone have any experience taking this? If so, how was it? Did it work? What were the side effects? I'm looking into taking something that can help my exacerbation. I have narrowed down the therapies between Tysabri and Novantrone. I know Tysabri is effective, but I'm not sure about Novantrone.
STEVP
STEVP
I did Novantrone for two years. I was close to my lifetiem maximum dose when a muga scan indicated I was getting some heart damage.

At the time I was in a downward spiral. I believe Novantrone did stop things in their tracks. That was probably close to 10 years ago.
PharmDFighter
PharmDFighter
How is your heart now? Overall, did you think it was a good option to use it?
mjideas
mjideas
I know a friend who took several doses. She initially thought it helped but overall it did not unfortunately. My MS clinic doesn't use it anymore. It has a small 2.5% risk of developing leukemia.

These choices suck.

Anyone mention Cytoxin to you? That was helpful to a woman who runs the support group I belong to.

Best,

Melanie
PharmDFighter
PharmDFighter
I didn't see cytoxin as a major therapy for MS, but now I will look into it. Thanks so much for the info!
deleted_user
deleted_user
I don't know any MS neurologist in my area who still uses Novantrone -- there's too much concern about cardiac damage (and many better choices!). If you do take Tysabri, make sure you get tested for JC virus antibodies -- if the test is positive, you probably shouldn't take Tysabri (ups your risk of PML too much. Cytoxan and methothrexate are other options -- I actually found methotrexate subq more helpful than cytoxan. Another thing that is starting to look really promising is Rituxan.

I'm curious, though -- you say you're looking for something that will help your exacerbation. None of these things are really demonstrated to help an exacerbation (although one can hope!). If you're having an exacerbation that needs treatment, steroids or ACTH are more commonly tried.

Take care.