How did Tysabri Change your Quality of Life

scrapnini · 11-21-2012, 04:00 PM

I just had my 1st infusion of Tysabri... and the nurses at the infusion center are confident I am going to see results (even predicting I will be back at work in three weeks). As much as I want to believe this, I am still having trouble putting my faith in this drug.

I have read many times about how people say that Tysabri has given them their life back, and since my relapse (my first since dx, my quality of life has been fairly poor... this attack is taking forever to go into remission)... i was curious if some of you could share with me how Tysabri gave you a better quality of life?

Lynn · 11-22-2012, 01:23 AM

I have to say, I didn't notice immediate improvement - but that is not to say that you will not. I had stopped using Interferons, so I did notice that I didn't feel hung-over or have that just hit by a truck feeling that Beta and the other interferons seem reknowned for.

That was a big bonus.

I did notice that I had more energy, became more coordinated, my mind was clearer, and did not feel as heat intolerant as the first six months or so passed. Bear in mind, that when I started Ty, I was not coming to it straight off the back of a huge attack like you are, though.

I so hope that this is wonderful for you, and does all of the things that you so clearly need it to do. There are lots of super encouraging stories out there.

Lyn

offinthedistance · 11-22-2012, 02:06 AM

Likewise, my mind is clearer, memory is a bit better, nystagmus lessened, balance a bit better.
Everything just seems a lot better, overall a huge improvement in energy. I noticed a difference after my first infusion. I just had my fourth and it's just every day is getting better.
Very happy with Tysabri.
Good luck. I'd be interested to hear how it works coming off a big attack like you have.

scrapnini · 11-22-2012, 01:05 PM

On top of everything, we lost my dad after a 34 year struggle with MS last night. I knew he was in bad shape before my attack; just did not know what to do... or even how to measure it because after being bed ridden/paralyzed for all the years he has been, how do you measure.... Things had gotten worse this last week, and my mom has been so busy with me things just kept getting worse for him... with me the way I am right now (with just enough abilities to drive me mad that I can not do more) This is the worst thing in the world. I want my body to work so that I can deal with all this.. I can't handle all that is going on in my present condition...

SallyC · 11-22-2012, 01:48 PM

I am so sorry for your loss Scrap..

Erika · 11-22-2012, 03:32 PM

How sad; and to have the loss of your father added to your stress load, especially when others are celebrating is so hard to make sense of.
I am so sorry.

Thoughts and prayers to you and your family

.

With love, Erika

ewizabeth · 11-22-2012, 09:51 PM

I'm sorry for your loss.

I hope that you'll get good results from Tysabri. Many people have and I hope you're one of them.