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Posted: Thu Apr 13, 2006 1:58 am Post subject: Beta Inteferon & PPMS
Hi Folks, looking for some guidance and help: have close family member who was diagnosed some 24-30 months ago with MS, I've recently understood it to be PPMS and have been doing some background understanding on the same; his MS Consultant has suggested trying Beta Interferon to try to slow/stop the deterioration in his mobility, which we're looking at ways of funding etc - does anyone here have any feedback on the success of BI on PMSS, alot of the reading I've found shows little positive effect (due in the main I'm sure to the fact that few trials have been done), I'm looking for some feedback to help us decide on best course to take (take full responsibility for the decision, don't worry!) - is hard to find anything 'positive' in the general domain.
Appreciate any/all feedback and wish all posters the very best,
Joined: Feb 02, 2004 Posts: 863 Location: California, USA
Posted: Thu Apr 13, 2006 2:17 am Post subject:
Hi Justin,
Applause to you for helping out someone close to you with MS.
If you spend some time searching around the boards, you will find many alternatives that are being tested out anecdotally. When considering the aggressive course of PPMS, you should spend some time investigating statins, antibiotics, and Campath, in addition to Novantrone, Tysabri (no proof of efficacy in PPMS) and the higher dose interferons (likewise). There are hosts more; information is available in each dedicated section here.
You mentioned funding-- please be aware that many, if not all, of the MS therapeutic companies offer assistance to patients in need. For example, here is some contact information:
Copaxone, Rebif (call the MSLifeLines Support Program at 1-877-447-3243), Betaseron (call the Berlex Patient Assistance Program at 1-800-948-5777), Avonex (call the Avonex Assistance Program at 1-800-456-2255), and so on.
Welcome to the site,
-arron _________________ Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
WOW - thanks for the quick reply: I am at the beginning of this 'research' and want to try to get as much data as possible to open up as many avenues of exploration; I should have mentioned that my family member resides outside of the US and, due to choice of residence some years ago, does not benefit from any 'State Funded' assistance - hence we're all trying to ensure that any money spent is more than a 'wild card' approach and has some substance (regardless of how small!) behind it.
I'll check out the forums as suggested, and thanks for your support.
Posted: Thu Apr 13, 2006 8:56 am Post subject: More information
Justin--Since your initial post mentioned "alot of reading," I recommend a new book, Curing MS by Howard L. Weiner, M.D.--not that I necessarily agree with all he says, but it gives a good history of how things have developed so far. His Chapter 14 "Twenty-one Points" summarizes current beliefs about MS. He covers the interferons in earlier chapters.
Best wishes to you and your family member. (I commend you for your involvement and support for him.)
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