Can You Please Explain When You Stop TY

[KatieAgain]

I was recently in a flare that brought me to my knees and honestly, I did not think I was ever going to come out of it.

I was between DMDs, which was a huge mistake on my part, waiting for Tecfidera. Anyway, more bad than good seems to be coming out of the Tecfidera Thread. So, I am probably doing something, I said I never would do and that is go on TY at least until things get ironed out with the meds...I know there are a couple more in the pipeline. I am JCV-, for now and I meet with my new neuro team next week and I have already been told they are recommending TY.

But I do have a concern. Several posters have mentioned bad things happening to them when they stop TY? Some kind of withdrawl effect? Could someone please elaborate. For example, I am 50 years old today, and if I was taking TY, would I be a 90 year old in a 50 year old body? Or is TY possibly addictive...what is causing that withdrawal effect?

Thanks

[ru4cats]

KatieAgain, I am on Ty, and will have my 39th (?) infusion at the end of June. I am also JC- (4 tests), so I plan on being on Ty for the foreseeable future. Like my neuro says, "If it ain't broke, don't fix it". Ty has been a good drug for me. I was diagnosed at 58 1/2, and am now 3 years older. I definitely don't feel like I've aged due to Ty, and I don't feel addicted to Ty in any sense.

Ty works by suppressing the immune system. It prevents the white blood cells from crossing the brain barrier to attack the nerve conductors. So it makes sense that when you quit Ty, the immune system reverts to what it was before you started Ty; your immune system kind of "reactivates", or at least that is what I understand. People have quit Ty with success, but many do go on another DMD right away to hopefully prevent the reactivation of the immune system.

Hope this helps. My life is now composed of 28 day months, and I can only hope you would have the same positive response to Ty that I have: no new symptoms, no new lesions, lesions I have quieting down. I'm continuing to deal with the MS disability that started my journey to my MS diagnosis. However, I can live with it.

[KatieAgain]

Thanks. What you wrote makes sense. I was beginning to wonder if Betty Ford needed to open a Tysabri withdrawal center

I too hope I have as good of an experience as you on TY. I am in a Support Group of about 100 people and those on TY were happy during the time they were on it.

I was suppose to be the one in the group going on Tecfidera, but I don't think my new neuro is going to allow that.

Thank-you Again for your reply.

[fishead]

Katie,

I took myself off Tysabri, when I noticed it was no longer making a difference. I actually felt BETTER, after I went off of it. Even my MOOD was better--so much, that people commented about it, without me saying a thing.