View Single Post
Old 08-01-2007, 10:17 AM
lady_express_44's Avatar
lady_express_44 lady_express_44 is offline
Grand Magnate
 
Join Date: Aug 2006
Location: Vancouver, Canada
Posts: 3,300
15 yr Member
lady_express_44 lady_express_44 is offline
Grand Magnate
lady_express_44's Avatar
 
Join Date: Aug 2006
Location: Vancouver, Canada
Posts: 3,300
15 yr Member
Default

Hi Bethany,

If you were just struggling with the side-effects, or if Rebif just didn't seem to be slowing your attacks yet, I'd suggest you give it time (a year?) to see if things level off. However since you are convinced that you are struggling from side-effects, and it seems to be making you worse, I think it's time to become your own advocate with your neuro.

At this point in time, Tysabri is recommended for people who have failed at other proven and SAFER therapies. I am reluctantly impressed by it's track record (over this last year), but I think it is premature and irresponsible to recommend such a treatment to people who are new to treatment options.

Our Neuro's have biases, that are NOT necessarily based on anything concrete. All of the CRABs have equal efficacy, and if one doesn't work, it doesn't mean another won't. What about Copaxone or Betaseron, which are different drugs then Rebif? . . . There are still a few other mainstream options available to you.

I have opted out of the CRABs and Tysabri entirely over the last 16 yrs. I am on a non-mainstream option called LDN (Low Dose Naltrexone), and it has been amazing for me. I was very unwell for a few years before I got on it, and have reduced my disability and stayed very stable since starting on it 2 yrs ago. Again, this would not be my "recommended" course of action for a person who is new to trying MS treatment options, but I'd certainly recommend giving that a go before trying Tysabri (at this point in history).

I think your neuro needs to be nailed to the wall. Ask him why he thinks Rebif is better, and why he would not recommend another CRAB before Tysabri. That approach blows my mind!

Cherie
__________________
I am not a Neurologist, Physician, Nurse, or Hairdresser ... but I have learned that it is not such a great idea to give oneself a haircut after three margaritas
.
lady_express_44 is offline   Reply With QuoteReply With Quote