life changing?

[shel67]

Researching Tysabri I keep reading over and over that "it's changed my life", or that "it has given me my life back"...

Can those who are being treated with Tysabri explain further what life changing means? Is it because the interferon drugs had you living with flu symptoms all the time, and that's gone now or does Tysabri provide something more than just not having to live with the flu and injections anymore?

I'm waiting to see if I'm JVC negative or not... I want to choose this treatment to use because I feel my MS is moving to fast.

From all my reading on this, it must be really helping to still want to stay on it even with the positive test results. If I'm positive I don't know what I'll choose. It is still just so surreal that this is my life now...

[Teekybird]

awaiting responses

Hi Shel67,
I'm eagerly awaiting responses to this as well. I have just had Tysabri #2 on June 18. At this point, I cannot say that it is life changing.

I am interested in what others say regarding this.

[lindaincolorado]

Somewhere between 4-6 infusions I got more stamina/energy. My QOL improved, I have done and still do all that I want on any given day. I go to restaurants, the movies, over to friends homes, out dancing, gambling, I travel ...I exercise 5-7 times a week, which 3 of those is water aerobics. I just got home from playing 3 hours of cards after water aerobics this morning
My MRIs are stable, progression halted
I HAVE A LIFE
I am a very grateful Tysabri user.
I know it doesn't do everything for everyone. I am fortunate, others have been more fortunate than me, some less and some it doesn't work for them.

I do use a scooter for distance as my R leg doesn't move well, this happened before I started Ty.

[shel67]

Thanks Linda... You are a real inspiration. I hope to God I am negative and I can start this medication very soon and it stops this beast in it's tracks. I have to believe I have a chance... Pray for me if you don't mind.

Seeing that my very first MRIs were not good, black holes and all and how I feel the course of this disease went from A to Z starting with mild flares that caused me/left me with zero physical limitations, and I fully recovered from these flares, to all this physical stuff along with crazy head stuff and imbalance, that does not look like its going away, i think I need this treatment.

As long as I don't get any worse I can still work my job which requires me standing, moving, and using both gross and fine motor skills. Crazy, huh? That I can still do it and that I'm intending to still do it. The MS neuro said if I can do it, do it because the brain remembers and wants to do what its use to doing.

My symptoms are *I think* getting better or my CNS is making new pathways. Today I did a lot in my house. I cleaned it good, and I noticed I was doing things "normally" and I'm not slower. I was able to sweep the stairs which with the imbalance I been having is a big deal.

So I know that I have permanate damage but I can still do what I always have, its just harder and not with out a lot of incovenice. My issues are more this werid head/eyes and balance. Some days are much worse than others. So I'm hanging on to hope this can improve but if Tysabri can stabilize and stay off any worsening that enough... Pray I can go on it soon with out any issues and I tolerate it well. I'm worried about infections.

[lindaincolorado]

shel67, I said a prayer for you
By the way.. even if you are positive, you can go on Tysabri for approx 12 months as I'm pretty sure there have been no cases of pml for 13 infusions. Also, the titer # is important. I have been between .23 -.27 for about 1 1/2 years (my Dr gives me the blood test every 3-4 months). I hope you are negative; communicate with your Dr.

[BadAttitude]

Hello!

I know I'm kinda late to this thread and I'm not on Tysabri anymore () but I will say that once I went on it, it WAS life-changing.

• I didn't have the flu like symptons of Avonex to deal with anymore.
• I didn't have adverse side effects from Tysabri, ever. I felt as good leaving infusions as I did going in.
• I didn't have to stick myself with the Avonex needle every week anymore.
• My relapses stopped.
• I gained peace of mind knowing my treatment was working and that I could concentrate on the things I wanted to, instead of worrying when the other shoe was going to drop.

Unfortunately I had to go off of Tysabri after seven straight years on it because my JCV titer was too high and the length of time I'd been on it made my neuro leery of leaving me on it.

I had to switch to Gilenya for a year and that was a complete fail for me. Three months after stopping Tysabri and enjoying a period of stability, I had a severe relapse, calmed with IV steroids, and another huge relapse with severe new symptoms eight months after that...about the same time I was checking into the hospital to start Lemtrada.

The Lemtrada seems to be doing the trick for me like Tysabri did, knock on wood. I hope the Tysabri helps you like it did me.

[shel67]

One of my concerns... A relapse if I have to go off.

[toot2818]

I just had #4 infusion. No life changing at this point.

You wondered if you had to go off--After my #3 I was feeling like before I started TY. I had 3 days of steroids before #4. That was a good move. I'm now feeling "normal" for MS.

I'm hoping in time I will improve my walking

[shel67]

So you were in a relapse when you started?

[Teekybird]

going off of Tysabri

Shel67:

As far as going off of Tysabri...I cannot talk from personal experience yet, as I haven't gone off of it. However, this was a bit of a concern for me as well. I am expecting to have a surgery in about a year, and I will be taken off of Tysabri (not sure exactly when in relation to the surgery). It's far enough away, that the answer that my doctor gave made sense at the time, and I've kind of tucked away/forget the details. I believe that she said that I'd go off of the Tysabri a month before expected surgery and then get IV steroids at about the time of surgery and then a month later if I end up needing to be off it for that long. Those may not be the exact time frames, but that's roughly what I think she said. I also presented to her the concern that upon going off of it, the MS symptoms would come back full force. She didn't anticipate that, but I guess the IV steroids while off it might help with that.

(The surgery is going to be jaw surgery. When I get closer to the time, I'm sure I'll be posting and nervous about it. For now it's all far enough away that I am not thinking about it too much). {And MS has me focusing more on the short term/day to day in general anyhow}.

[shel67]

So Tysabri has helped your symptoms?

[Teekybird]

Shel67,
I'm not sure who you were asking....or if the last question was just in general.

I do not have any major symptoms right now...and didn't when I started Tysabri either really. I had optic neuritis and since that happened my vision hasn't been quite right. It has not improved since being on Tysabri, but I have only had 2 infusions. (Third will be on 7/16/15).

I feel like my level of fatigue has improved some since being on Tysabri. I actually noticed this more after the first infusion. I don't know if I have just adapted to my current level, but I did feel a certain boost in energy after the first infusion. Boost like: I was actually able to meet up for dinner with friends after work, or handle a quick grocery shopping trip after work, whereas before I was pretty much coming home from work and going straight to bed.