After being diagnosed at a time where there were no approved medications (and not until 10 years after my diagnosis) I think that taking approved medications is better than taking none. We all know MS is going on inside of us whether we feel it is or not. Being on a DMD is our only way of trying to get whatever percentage better than nothing. We know our bodies and how we feel; Vicki was right on that.
We'll keep fighting the good fighting until they find a cure. In the meantime, my opinion is we have to stay on a med for our own sake. These studies do not know us up close and personal!
Thank for your QofA, Dan.
Hi, Cathy. Keep fighting the good fight for sure! And truly, reading your comment sparked an epiphany for me! I pictured everyone with MS out in the middle of Lake Michigan in a boat. There were enough life preservers for everyone to have one. Many put the preservers on per chance a storm came up and the ship started to sink. Many others chose not to put on the preservers because they were fine without them. The reality is, if the ship went down there were no guarantees that everyone wearing a preserver would survive just as there were no guarantees that people not wearing preservers would not survive. Isn't this kind of how it is with disease-modifying medicines? Just like the preservers, it all comes down to personal comfort and choice.
Here is the editorial that went along with the JAMA article that the NYTs journalist did not include. It's written by one of the top global MS specialists. http://jama.jamanetwork.com/article.aspx?articleid=1217217 It gets very frustrating when the fair balance (e.g. both sides of the story) isn't included.
This is information I posted on my web page several years ago. I was not helped by Rebif or Copaxone and was skeptical of the benefits. As you can see, the drug makers themselves gave minimal percentages of benefit.
“CRAB” Drugs:
Copaxone (glatiramer acetate) - Manufactured byTeva Neuroscience, Copaxone is a synthetic compound made up of amino acids that is injected daily under the skin. Teva claims the drug is approximately 30% effective in protecting against MS attacks.
Rebif (interferon beta-1a) -
Manufactured by EMD Serono, Rebif is an interferon made from human plasma and is injected 3 times a week under the skin.
Merck claims the drug is approximately 33% effective in preventing relapses.
Avonex (interferon beta-1a) -
Manufactured by Biogen Idec, Avonex is an interferon made from human plasma and is injected once a week into the thigh muscle.
Biogen claims the drug is approximately 32% effective in decreasing relapses.
Betaseron (interferon beta-1b) -
Manufactured by Bayer, it is an interferon made from human plasma and is injected every 2 days under the skin. Once again, Bayer claims the drug is approximately 1/3 effective in decreasing relapses.
Dan,
My daughter was offically diagnoised with ms at 16.... After trying IVIG's for 6 months nothing seems to stop the growth of her lesions.... SHe started using avonex 4 months ago and recieved a MRI showing her lesions have decreased and some have gone away.. SHes now is 17 , hasnt had a replase in over a year , plays competive softball, has no side efferts after taking the drug and will compete in a road bike matharon, riding 80 miles in November.... The drug seems to be working and I hope it works till they find a cure for this monster dibilitating disease. Thanks for your good vibes..pat
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Thank you for your great perspective. As you said “Just think how much worse it could have been if you weren’t taking one of the medicines.” That is and always will be the great unknown. Add to that the placebo effect (which can make a huge difference) and we may never know the effectiveness of any single drug, but we take them anyway because it gives us the best chance and the best defense for fighting this disease. I remember reading an article years ago which said that the interferons may only work about 33% of the time.. So what? Unless you have some other cure-all or know that you are that two out of three, take it anyway.
The article itself may have triggered a whiplash response. Your article will help to quell that reaction, making you the voice of reason. Thank you for that.
Michael
Thanks, Michael. Yes, it always will be the great unknown. Which always leads me to think that Jennifer and I have a huge casino less than 10 minutes from our house but we don't go there much because we don't like to spend a lot of money gambling. But isn't that kind of what we're doing with our MS medicines? Spending a lot of money on drugs we don't know for sure if or exactly how they work? Guess we really are gamblers, huh?