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mymsviews.com
mymsviews.net
mymsviews.org
Where you will find
mymsviews.com
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MS Conference & Journal summary...September 12, 1998 The MS Conference data can be found at the Immunex website. I just entered < Immunex > than scrolled to Immunex Press Release Archives, Sept. 10, 1998. This study was with 194 chronic progressive MSers, using Novantrone (MX, mitoxantrone). MX --12 mg/m2 and 5 mg/m2--with placebo, and than administered each treatment intravenously once every three months for two years. The 12mg dosage worked the best (my previous entry I said I was using.20mg, I'm using 12mg. Oops!) I've talked with Immunex (Melissa D. Crisera) who's had a conversation with the MS Society Rep. (Can't remember his name) who basically said the studies are promising but they would have to (study) look at the cardiomyopathy, left ventricle of the heart. Novantrone was FDA approved in 87, it has been tested, followed and tested again and again! Damage can be done but that's usually with higher doses. 12mg/m2 is extremely small. Drs Gruener and Lenzhofer of Ulm University (1991) followed-up on 4,450 patients worldwide, using Novantrone for varied treatments, finding three (3) patients to show any cardiomyopathy. They have been studying Novantrone for MS since 85 in Greece, Germany, Belgium, France and Italy (I've probably missed a few!) WHAT more is needed?? I have my treatment going, EVERYONE should have the choice, we have MS, that doesn't mean our minds are going because our bodies are. ( which is a common connection, you think!!) Looking at all the options, making a decision with or without your doctors, (blessing) should be YOUR RIGHT...I'm not talking about trying to put a fire out with gasoline. I'm talking about making a sound decision for a treatment and using that treatment after you have looked at all the "Potential" hazards. Which are minimal, in my opinion. Going through my Journal, looking at the different doses I have tried, which are... 20mg Novantrone and 1gm Solumedrol monthly . 5mg Novantrone weekly, 1gm Solumedrol monthly 12mg Novantrone every 3 months,1 gm Solumedrol monthly I feel that the 20mg MX and 1gm Solumedrol worked best. Or I should say, my body reacted faster to change. The 5mg MX weekly, I don't think I did it long enough to compare. The 12mg MX I'm doing now hasn't been long enough to notice. I do think that because of my level of disability and the length I've been this disabled ( 5 years) that a steroid is needed to get the muscles going again with a lot of exercise and EMS. This past month has been a let down because of my lack of exercising and no EMS,yet. I truly believe that this treatment will work (in my case) along with these 2 important elements. I compare it to changing the color of a bucket of white paint! You can keep adding the drops of blue color to the paint but if you don't mix it up, it's going to settle at the bottom not changing the color at all. I'll be doing the protocol from this study but I think I'll be keeping the Solumedrol going as well. When I get the exercise/EMS and ROM going, things will be happening!! ( I don't want to dry up like a bucket of open paint!-) I keep harping about exercise, maybe it's because I was so active, fit and basically didn't sit still for very long and this drives me nuts! Or I've done my homework to believe that this is important! I hope that everyone that feels this treatment is for them doesn't Walk/Run/Roll into a lot of barriers. With this MS Conference it will be harder to be denied. Do what it takes to get what you think is best for you. WE HAVE THE MS, IT'S IN OUR BODIES. IT SHOULD BE OUR INTELLIGENT...KNOWLEDGABLE... INFORMED...CHOICE. |
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