Mitoxantrone treatment.I read the info but what effect will it have on my MS and for how long ?

Hey Mike

Can I just say one thing before I answer?  "AHHHHHHH"  I just did answer your question and when I pressed the button to send an error message came up and deleted everything.  I hate when that happens.

Okay now onto your question.  First of all I am just curious, did your Rebif stop working for you?  What has your neurologist said about this new treatment?

You were right when you said that Navantrone, the brand name for the drug Mitoxantrone, is usually used to treat cancer but is also now used to treat both secondary progressive MS to slow progression and is also used for folks having  worsening relapsing remitting MS in order to lengthen the time between relapses.    Novantrone works for MS patients by suppressing the white blood cells involved in the immune system's attack on the myelin that surrounds nerve fibers in the brain and nervous system.

Let me first give you some very detailed information about Novantrone from Health Central with this link.

I have no personal experience with taking Novantrone but I can show you a site where people do and are talking about it.  Here is a link to MS patients who are using Novantrone to help with their MS.

 Here is also a link to the official Novantrone site for futher reading and research.

Is Novantrone effective for the treatment of Multiple Sclerosis?  Here is a paper from the FDA about clinical trials done using this drug and here is what they say:

'Two randomized multi-center clinical studies, totaling about 200 patients, demonstrated that Novantrone could reduce the number of relapse episodes and decrease the progression of disability in patients with secondary (chronic) progressive, progressive relapsing, or worsening relapsing-remitting MS (all forms of the disease in which patients become significantly more abnormal between relapses as time passes). The trials showed that Novantrone can help reduce the number of relapses and help patients keep their mobility longer."

There are considerable side effects to using this drug including:  nausea, hair thinning, loss of menstrual periods, mouth sores, and bladder infections.  Of course some would not apply to a man.

There is also the warning about the risk of developing heart problems as a result of using Novantrone and the following quote comes right from the Novantrone official site:

"Novantrone may damage your heart at any time during treatment or months to years after treatment ends. Heart damage from Novantrone can be serious and may cause death. Your chance of heart problems depends on the amount of Novantrone you have used. Your doctor will limit your number of Novantrone doses. Your doctor will do certain tests to see if your heart is normal."

So it would be wise to look at all the precautions and talk with your doctor before starting this treatment.

I was wondering if you could come back and tell us how you fare using this treatment.  There isn't a whole heck of a lot of information about using this drug and personal experience trumps any other sort of information out there. 

Thanks so much for your question and I am praying that this time I do not see an error message when I press send. 

Hi Mike,

So have you decided to use Novantrone?  If so, how do you feel?

Anecdotally, I've read accounts of MS patients who did really well on Novantrone.  But as I'm sure you are aware, there is a limit to how many doses one can take in a lifetime.  For this reason, some folks stop using it so as to save more dose allowances for the future.

I've not had experience with Novantrone and am only going by what patients have shared.  I've love to learn more from your experience with it and I'm sure that others would too.

I hope you have a nice day.

Novantron is FDA approved for secondary MS. I was on Betaseron, but it was extremely hard on me, mentally and physically. Before starting had cardiac ultrasound and doppler studies done. Being in the medical field I had all the toys at my place to use along with the doctors and techs, so I had a long term record of my heart. It was a week after my second dose when I was going to the couch and had a MI, Cathed, 2-4mm stents put into the RCA. FDA has put new labeling on the drug stating that you can have cardiac problems even years after you quit taking it. It is toxic to the cardiac muscle, therefore most do not go past 8-12 doses. However I have seen some MS patients benefit from it, I guess it is a roll of the dice..God Bless...John