Originally Posted by bethanylynn
I've had NOTHING but problems since beginning Rebif.
I wobbled a bit when walking before rebif, but now my balance is GONE and I have to hold on for dear life before taking a step! I KNOW this is not progression of the MS, but part of the rebif BS. I was back to my old semi-wobble and comfortable sleeping during my "No More Shots, D*mmit!!" protest a few weeks and stopped the shots for 3 weeks.
After ONE effing shot, it is ALL back... the spasticity (spelling???
Help!), the relentless RLS, my inability to walk to my bathroom without falling over...
My neuro and the MS specialist at Johns Hopkins said that rebif was the best treatment for me...but how in the h*ll do I function daily like this? The MS doc said I might
be a candidate for tysabri (spell help again!??!!
), but I certainly DON'T want to start something new and be worse off than I am with the rebif!
In general, how do you weigh functioning competently today with keeping the ol' MS monster at bay?
Bethany - it sounds to me like you are getting conflicting information from your MS doc and your neuro. They both need to be on the same page - and that would be the same page as you - when talking to you about treatment. Maybe you can do your own research before your next appt and then ask them some hard questions, starting with why they think Rebif is the best option when obviously it is making you feel so horrible!
A good place to start for information is the links at the top of the page here. And then you can get more information from the National MS Society's website where they compare the ABCRs, Tysabri, and Novantrone, the 5 top treatments for MS. (Novantrone being a chemo treatment). Here's the link:
Each drug has their own website which you can go to from that link.
It's a tough decision and believe me, I've been there. I've been on Beta, Tysabri, and Copaxone. I am now in a clinical trial for Tovaxin because I got tired of my insurance company playing games with me trying to get approved for Tysabri. I failed Beta and couldn't tolerate Copaxone.
After over a year on nothing but steroid pulses, I applied for the Tovaxin clinical trial, I was accepted. So far, so good.
I am still an advocate for Tysabri as I believe it is a good drug for some
people. It is not for everyone, as all drugs are not for everyone. There are some people who have failed it, just like those of us who have failed some of the ABCRs.
I testified in front of the FDA for the re-release of Tysabri, and just participated in a 2-day FDA conference representing the MS Community stressing the need for ease of accessibility and consistency in training regarding the TOUCH protocol for Tysabri.
I know, a lot of information! I wish you luck with your decision and sincerely hope that you get the care you deserve!