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Posted: Sat Feb 09, 2008 10:10 am Post subject: Why Novantrone?
I went to see my neurologist yesterday, I go as infrequently as possible. I told him I went off my Avonex in December after nine years. I proceeded to tellhim I was considering LDN and he almost freaked. Now in the last nine years I've progressed nicely from walking without assistance to wheelchair bound. Never once did my Doctor tell me about Novantrone but now that I'm off Avonex and possibly considering LDN, he tells me I should start Novantrone. Now I know about the heart toxicity and the fact that Serono makes no guarantees that a year or more after stopping Novantrone you wont have heart problems. So what's the upside? It may or may not stabalize your MS? So after you stop Novantrone you remain stable for one month, one year. It seems like alot to ask someone to agree to with little or no lasting value. So please help me to understand the benefits so I can formulate my own risk/reward profile.
Posted: Sat Feb 09, 2008 12:40 pm Post subject: Re: Revimmune
Chris-
I appreciate the post and Revimmune sounds like the ticket for the people I've read about. Here's the thing, I'm SPMS with no currenly active lesions and I'm about a 7 on the EDSS scale. I'm sure I'm not what Hopkins is looking for.
Posted: Sun Feb 10, 2008 1:55 am Post subject: Re: Why Novantrone?
digepix wrote:
Now I know about the heart toxicity and the fact that Serono makes no guarantees that a year or more after stopping Novantrone you wont have heart problems. So what's the upside? It may or may not stabalize your MS? So after you stop Novantrone you remain stable for one month, one year. It seems like alot to ask someone to agree to with little or no lasting value. So please help me to understand the benefits so I can formulate my own risk/reward profile.
I share your concerns. Novantrone is not a cure nor is it a viable long term treatment. Therefore, treatment with Novantrone alone may not be the best option available. Though, some studies, such as the ones that Dignan has provided links for, have shown increased benefit when Novantrone is combined with subsequent treatment with Copaxone. After doing some investigation on your own, I would recommend that you then discuss your concerns with your neurologist.
I was DX'd in Oct 05, on Betaferon Nov 05, going downhill fast, and on Novantrone Aug 06. Just finished the two years and all I can say is do it. Everyone is so scared of the word chemotherapy, and the stories associated with it. Fact is Neuro's are going to recommend patients to go on it unless they believe it is necessary and will help.
I didn't see the miracle recovery, that everyone hopes for, and don't get, but no one can argue with the significant improvements shown in my MRI's as a result of being on Novantrone. You, and anyone with MS, has got nothing to lose by trying it, but you've got a hell of a lot to lose if you don't.
I hope all goes well. My time on Novantrone was notable for it's lack of trouble and drama, just the way I prefer things to be.
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