#50

[1dayitwillNd]

Glad to hear that people are having success with Tysabri. I am about to have my first infusion within the next couple weeks.

For those posting on this thread:

1* What was your level of disability before/after using Ty?

2* What level of improvement of your symptoms are there?

3* What have your MRIs shown will on Ty? No new lesions, smaller existing (non-active) lesions?

4* What are your some acute side effects days after getting infusion?

Thanks for for any responses.

[lindaincolorado]

RW YEA !! and YEA!!

LL60-sorry your new insurance leaves so much for you to pay I am glad you are doing well! Fri when you get #33 I will be getting #64 for both of us or maybe not-my appt is 1/27-yours might be 2/3 ??

1dayitwillNd
1*walked with 2 canes-saw myself getting weaker and heading downhill

2*walk with 1 cane, better (much)balance, more stamina,less fatigue :

3*after 7 infusions MRIs showed no new or active lesions and then a couple years ago old lesions were getting smaller and/or going away :

4* do not have side effects :

[Michalk]

Thanks Linda- your report is very encouraging
Thanks everyone - I'm starting on Sunday (I've been taking copaxone for 17 years but now it's time for a change

Why do people always count the # of treatments (#46...), any reason or just something to do?

[ru4cats]

Michalk,
Counting your infusions is like a "badge of honor" and celebration! For most, each infusion means less progression, fewer (more likely none) relapses, positive feelings about life, positive changes in level of disability, and no side effects! I've only had 19, but I am amazed daily at what an easy drug it is to take and at how great I feel! There are no guarantees, but at this point in time, I believe Tysabri is the best drug out there, even with the PML risk. For myself, I celebrate each infusion and make infusion day my own! Enjoy!

[Michalk]

When the copaxone used to come in a big box (cause you had to mix the drug) I used to write a big number on the box when I got the next month's - The same idea

I really am excited about it though maybe I'm getting my hopes up too high. I really haven't been having many episodes but I've been slowly going downhill and my walking is really awful (don't have a wheelchair or even cane, but I should - I prefer to stay home ) - I'm hoping this can really make a difference in my life - Everyone really sounds like it changed their life - or do only the "successes" post?

[Riverwild]

I had my 65th infusion on May 17th, May 25th was my 5 year anniversary, and slid through my 66th infusion last week!

I am still JCV-, haven't had a relapse for 5 years, last treatment on steroids was in May of 2007, right before I started Tysabri.

Thinking back to where I was back then, having relapses every 3-4 months, barely getting over one and having another one, and where I am now, relapse free, no visible signs/symptoms except for the residual spasticity and fatigue that is controlled with a minimum amount of baclofen and provigil, I have to say that Tysabri works exactly as it is supposed to for me.

It has been my miracle. I do not miss shots daily, I do not miss stumbling and falling, I do not miss the dizziness, blurry vision, cross-eyed look, wearing an eye patch, having to have a spotlight pointing my way when I walk outside in the dark, that bone tired feeling day after day after day, having to look ten times when I got to a stop sign, and wondering WTH was going to happen next to my body.

When I think back on what we went through to get Tysabri back to market, all the people who fought for it from many different walks of life, the FDA having to open up public comment for more than the usual two hour block to accomodate people with MS who wanted to testify (unprecedented, BTW!) and Tysabri's return to market after being wthdrawn (only the second drug in history to do that) and the very special people I met before and after all of it, I am so grateful that it worked for me. For those of you who were here during those times and supported us, thank you for that support, we did it and it works!

[LL60]

riverwild - thank you for sharing. I love reading about those being on tysabri for the long haul.

It is working great for me too. I go for #38 Friday.

People did fight for it to get back on the market. I watched some of it on the news. People who just didn't have the energy to really do what they did, pull up strength from deep down and fought for themselves and everyone else.

I add my thanks to them too.

[REG53]

Riverwild, what an inspiring post. I am glad you are still jcv- and ty has worked so well for you.

I have just had #65 and ty has been good for me also but I am jcv+ and I am looking at bg-12.

[Riverwild]

One of the phrasesthat has always stayed with me is:

TIME IS BRAIN!

meaning that the longer MS has to work on our brains, even silently, the more damage it does, even if we don't notice any changes at first.

I got to watch that first hand while waiting for the investigation to be over, watching those horrible white things invading my brain on every MRI I had. My neuro at the time begged me to go on anything to slow the course, and I finally had to admit that if I didn't do something I might lose more than I knew.

Even though Copaxone didn't work for me, it DOES work for some folks just as Avonex and Rebif and Betaseron work for some and not for others. I am reporting on my choice here. It is our choice to treat or not to treat, and to choose LDN, steroids, diet or whatever else we are comfortable with.

For me, Tysabri works and it has for over 5 years now with no problems.

[lindaincolorado]

Thanks for your posts
YAY #66 I am so happy for you!!
another YAY for all of us fighting the good fight ..

[M Gray]

#50

i have trying to post and can't get it posted so thought I would try a reply does anyone have really bad burning in their legs and they feel like they are in fire What didi they do about it

[Riverwild]

Hey! Long time no see!
Just a note to say I had # 74 last week! Still doing fine, had my annual MRI, no new lesions, no enhancing lesions, no changes since last time, JCV antibody test negative again, happy to report I am doing well!
Life is GOOD!

[REG53]

Hey Riverwild good to see you again and so happy you are still doing well.