Novantrone

[Paulette26]

Hello everyone,

I feel im entering the secondary pro type of Ms.
Im looking for some info on this board but haven't found it so far.
Any thoughts/advice are extremely appreciated!
Thx
Paulette
Dx '95 r&r
Dmd's since 1995
Currently on tysabri( have been since 2007)

[JerryD]

I wish that I could offer some words of advice but I can't. There is a sub forum that includes posts from Progressive MSer's. I wish you good luck and I hope that you can find some answers.

[Kimba22]

Hi Paulette,

Welcome to MS World! I hope you find this site both informative and supportive. I'm sorry that you think you may be entering the SPMS stage despite being on Tysabri for so long.

There's not much discussion here anymore about Novantrone. I don't have any experience of being on the drug to share with you. But, a nickname I remember was that it was called the "Smurf Drug," because it can turn your urine blue. Because it can have serious side effects, like cardiac toxicity or leukemia, I don't think it's used that much anymore. It also has a "black box warning" and there is a lifetime cumulative dose.

Here's a link to the National MS Society that explains the drug in more detail: http://www.nationalmssociety.org/Tre...ons/Novantrone

You can also search for discussions here by clicking on "search," then clicking on "advanced search". Then type "Novantrone" into the search bar.

This drug warrants a very serious talk with your doctor. Fighting this disease can sure be a tough choice! I hope you'll share what you decide to do.

Best of luck ,

[knuckle]

I underwent three infusions of Novantrone prior to 18 infusions of Tysabri about six years ago. In hindsight this was a poor decision by the neurologist because it increased the risk of PML. He was a big shot at Penn Medicine and it taught me that neuros sometimes don't know what they're doing with this disease.

Novantrone can be quite toxic to your heart and I would give that some serious consideration...

Did it help me? No, I didn't really experience any improvement in my disabilities.

For my SPMS, I take Low Dose Naltrexone (LDN) along with Alpha Lipoic Acid (ALA). Alpha Lipoic Acid is currently in clinical trials as a SPMS therapy:

Lipoic Acid for Secondary Progressive Multiple Sclerosis (MS)

The purpose of the study is to determine if lipoic acid can protect the brain and slow disability in secondary progressive multiple sclerosis.

http://clinicaltrials.gov/show/NCT01188811