Will Tysabri help day to day symptoms

[Spydre]

I'm going to be started on Tysabri shortly, just waiting on the blood tests to come back, and I was wondering something. Will Tysabri take care of some of my day to day symptoms - sort of the leftover damage from exacerbations? Or will that happen as some of the lesions heal?

[cocogirl]

Spydre, I still have some of the day to day stuff but what is helped on me is my walking and the fatigue level too. With these being much better, I am able to do much more and feel more productive. Sending positive thoughts your way for great blood tests results and for a good experience with Ty.

[ewizabeth]

We are all different. There is no evidence to show that day to day symptoms will be helped with this or any of the DMDs. My symptoms were worse on Ty so I went back to Copaxone and started to feel better.

Some have reported to feel better on Ty but everybody will have a different experience because all of us have many different situations.

[Lendi]

The MS nurse said that many of her patients reported being less fatigued and having less cognitive problems. I kept waiting and waiting but I"ve been on ty for 1 1/2 yrs and haven't noticed anything better or worse as far as side effects go. I'll take that though.

[Beema]

I was told tysabri hopefully slows down the progression but doesn't heal anything. My neurologist says they don't know if it actually even slows the progression yet. This is why there are all the studies right now but he says they know it doesn't heal anything that is already damaged.

I think each person is different and as I read different people's responses to ty I am wondering if a lot of it is the placebo affect when people feel better. The mind is powerful I know. Who knows just a thought.

[cocogirl]

I have 6 MRI's that say no new lesions in the 3 years and that has to account for something. I know that whether placebo effect or not, if I think I am doing better and can do more than I did, this is all that matters.

[ewizabeth]

I also had good MRIs while on Tysabri and it still made me feel worse. MRIs are not the only indicator to how well a med is doing. I feel so much better on Copaxone. My energy is better and I'm stronger as well. And the stress of PML risk is gone.

At my last neuro exam, my MS neuro was amazed at my strength and how well I was doing overall. No need for MRIs because I am doing so well.

[Spydre]

Ironically, for the two years I've been on copaxone, even though I never went through a period with no increase in lesions (although some existing lesions did heal), I did go through a long period with no exacerbations, and even with that, I never really felt "well". I'm really hoping with the Tysabri, that I finally get to get to that point - particularly if I go through time with no more lesions. Since I've started medicating my MS - 2 weeks after diagnosis - I've never felt above borderline. I'm hoping to change this.

[cocogirl]

Spydre,

Please know that the feeling of wellness is not necessarily an indicator of no activity going on in the myelin. I felt really well on Avonex and went 2 years without an MRI. When my liver functions really got out of hand the dr. took me off the Avonex and thought oh gee, maybe I should do an MRI. I still felt very well but the report showed many new and large lesions of varying ages.

I am glad for the Ty. Yes, I feel well. Yes, I have a greater risk of PML because of positive status with JC virus. I have an even greater risk of being maimed or killed everytime I get in the car on the busy roads. I will take my chances with Ty because no new lesions in 3 years.

[Lendi]

Spydre,

Wishing you all the best of benefits from Tysabri. I think, mentally anyway, I feel better being on Ty. I haven't had an MRI to say anything for sure but at least there are no day to day side effects. I call that a good thing as I was just miserable on the injections.

As far as I'm concerned there can be as many lesions in my brain as can be if they don't cause me any more issues. Then, only a few in just the right places can cause all the misery in the world. It's a crap shoot, either way IMHO.

[LindaT5761]

some patients have said Tysabri does help with symptoms

I've only had 1 treatment 5 days ago, so it's too soon to say. But some posters have said it here, my neuro says some patients say so & the drug co says so too. There was even a study of Tysabri that documents it. So it can, & sometimes it does.

Best of luck!

[lindaincolorado]

Hi Spydre, after 4-6 infusions I noticed my balance was better, less fatigue and more endurance . My QOL improved Then I had an MRI after 7 infusions of Ty that showed no new or active lesions Then with each MRI after showing no new or active lesions some of the old ones got smaller, some were gone and now I only have a few old ones. The one on my spine, however, has not changed and that is why they think my walking (foot drop) didn't improve

I am a Tysabri cheerleader