Re: Tysabri to LDN

[Guest guest]

Hi That has been a hard decision for me too.... even though i started with the reactions i am now getting from the Ty, and it does not work nearly as good as the first 8 mo.... it does still work. i am having an MRI in the morning to see make sure there is no PML (which i dont think there is ) and see if i have any new lesions. Before i heard about LDN i was not saying much to my neuro about how i was feeling because i was more afraid to go off of it then what was going wrong. at this point for me, it is worth the try to see if the LDN will and can work for both the MS and Crohn's. that is not to say i am very scared of flairs during this transition time. I am going through skip's pharmacy, he has been great... he has suggested that i start and stay on 3mg.... he says it will

be better to start at the 3mg having the Crohn's also. so, the ball is rolling, my next infusion was set for the 1st week of Dec, and I should get the LDN in about a week or so. I will keep you updated....and the best to you.....amyFrom: chris noellert <cnoellert@...>low dose naltrexone Sent: Tuesday, November 25, 2008 6:17:03 PMSubject: [low dose naltrexone] Tysabri to LDN

Amy,

I myself am at that same crossroad although I haven't decided yet to switch from Tysabri (8 months now) to LDN. I'm somewhat afraid to go off Tysabri for it seems to be working well for me and I've never had any side effects from it. I really like the once a month infusion vs. shots of Rebif 3X per week.

Although I've mostly heard great successes with LDN for other RRMS patients. But I am afraid to switch plus my neuro Doc doesn't condone the LDN treatment for his MS patients mainly because no official clinical trials with supporting data has been done by MS drug companies. I get why, because there's little money to be made by selling this inexpensive drug.

For this reason he won't give me a prescription for LDN but I do have references for other Doc's who will prescribe it for me should I chose this route. I did agree to tell him if I do this.

Is there anyone else in the group with RRMS who took Tysabri successfully and then stopped for LDN? Should I wait until Tysabri seems to no longer work for me?

Chris