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Tysabri Update

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Posted 2/29/2008 1:54 AM (GMT 0)
Hi All,

Great News. I was approved for Tysabri. I am going to start the wash out period for about 4 weeks and will have my first infusion on Easter Monday, March 24th. After speaking with my Touch Program Case Manager and my neuro, my fears seems to be at a rest for now. I feel more confident in the whole program and are starting to get excited about giving this a try.  I will be getting an MRI next week and some bloodwork. So i will keep you updated as it approaches. Didn't expect this to happen so fast, but in a way its probably better.

Lynn

Posted 2/29/2008 2:30 AM (GMT 0)
Hey Lynn!!!

WOOHOOOO!!!! I'm so glad to hear this!!! U'r right...this is fast, but i'm thinking u'r right, that's better! Please do keep us updated on things and on the results of the mri and bloodwork too. Wow...this is so cool friend!
Posted 2/29/2008 2:30 AM (GMT 0)

That’s great Lynn! I’m so glad the approval went quickly, and that you’re feeling more comfortable with starting tysabri. I wish you all the best J

 

Sunny

Posted 2/29/2008 2:49 AM (GMT 0)
I am glad to hear that you were approved Lynn! I also occasionally worry about some of the risks, but I am feeling more comfortable about it as time passes. However, I did get a referral to a dermatologist today for a entire body mole scan. That shouldn't be embarrassing, right?

It sounds like your neuro is on top of things. I did not have a MRI or bloodwork prior to starting tysabri, and my neuro does not plan on ordering an MRI unless I have problems. Sometimes, I think he is a little too laid back.

Let me know if you have any questions that I can answer. I think the fact that I survived 2 1/2 weeks with a two year old while dealing with bronchitis and a sinus infection suggests that tysabri is helping me with fatigue. I am also using my cane less.
Posted 2/29/2008 2:24 PM (GMT 0)

Hey Lynn,

I am proud of you!!  You are going after this disease.  I hope it all goes really well for you.  Just keep the faith.  This could be the med that really works for you.  I have heard such great things about tysabri.  You are such a fun person, it is hard to hear when things are getting you down.  I am thinking of you and hoping for better days real soon.

Love and prayers,

Posted 2/29/2008 5:11 PM (GMT 0)

Lynn,

Glad you got the approval quickly.  I hope this treatment works for you.  Keep us posted.

Hugs,

Debbie

Posted 3/1/2008 5:07 AM (GMT 0)
May i ask all of you a q. I know i can google it. But id rather hear from you.

When i was first dx'd...tysabri had been taken off, we all im sure know about that , and they were dicussing bringing it back..and wala..its here.

I can remember the bad side effect that was the fear but i cannot remember what tysabri is supposed to do? Delay attacks? um,,must be more than that?

Can anyone answer me please and thanks



kiera
Posted 3/1/2008 7:39 AM (GMT 0)

I don't know that much about tysabri.  It is a progression therapy just like copaxone, rebif, betaseron and avonex.  Instead of taking injections, you receive it in an IV infusion once a month.  It is not an interferon.

Anecdotal records seem to indicate that it is particulary good at reducing fatigue.  It is what many docs go with when another med is not being successful. 

I am sure others will be along with more info.  That is all I know. 

Love and prayers,

Posted 3/1/2008 3:35 PM (GMT 0)
Based on study by the manufacturer, before it was taken off the market, tysabri provided a 42% decrease in the chance one's disability would worsen compared to placebo, a 67% decrease in frequency of flare ups compared to the placebo, and significantly fewer brain lesions compared to the placebo. (touch literature) It does increase your chance of getting a rare brain infection (PML) that will result in death or severe disability. Although the manufacturers think that was caused by the 3 individuals (who contacted PML) being on other DMD's at the same time as tysabri. (Two had MS and one had Chrohns). There are other complications (some serious) that may occur with tysabri so it is generally not recommended for one unless they have failed at the other DMD's. However, it does appear that neurologists are now getting more comfortable with tysabri and prescrbing it more widely. I think it has been back on the market about 20 months with no reported PML's.

No one know what the long term side effects may be, but that is true of any new drug on the market. You just have to weigh the pros and cons before going on it. In my case I am allergic to interferons and had too many bad reactions to copaxone. So I felt that this was my only choice other than taking nothing or getting into a study on another potential drug. At this point, I think that quality of life is more important to me than quantity.
Posted 3/1/2008 4:12 PM (GMT 0)

Thanks Barb,

You have given us a ton of good information.  I truly believe you will have both quality and quantity of life.  You have really fought this disease hard and you are an amazing source of inspiration and support for us here.  Thanks for posting often and sharing your thoughts. 

How is Texas??? Are you having a great time?? I hope so, you deserve it. 

Love and prayers,

Posted 3/1/2008 6:19 PM (GMT 0)
Hey All,
Thanks for all the well wishes and support. I am greatful for everyone of you. Will keep you all posted. MRI is scheduled for this Friday.
Thanks a bunch
Lynn
Posted 3/1/2008 7:08 PM (GMT 0)
Hey everyone

New here, so I hope I'm doing this right. I just have a ? about Tysabri. Did you bring it up to your neuro or did they? I've had such a progression with sx that have not stopped since early part of last year. I also got new sx that have stayed. I did have a new lesion on my c-spine in Nov. 06 & also a flare in June 07. My neuro has just ordered another MRI of my C spine, but has said nothing about my sx. I was thinking about asking him about TY, they do it there.

Thanks
Posted 3/2/2008 3:37 AM (GMT 0)
My neurologist recomended it to me, but we had discussed it a few times. He told me that if he had a family member with MS that had experienced the problems I have had with other treatments he would have them on tysabri. But you should definiely bring it up and do research on ty if you want your neuro to consider it.
Posted 3/2/2008 4:38 PM (GMT 0)
Thanks Barb,

I have researched it & considering talking to my neuro about it. I can't take the interferons, was on Avonex until my liver enzymes & some other lab when up. I've been on Copaxone for 1 & 1/2 yrs. but I have had alot of progression of my sx with new sx & they are constant everyday now. It has affected my daily life, which is not okay with me. I have 4 grandbabies & I can't enjoy them like I use to. I can't do much of anything anymore or even go out. I really think I'm going to bring it up at my next appt. I'm having my C-spine repeated on Wed. so we'll see.

Thanks again
Posted 3/3/2008 1:33 AM (GMT 0)
Lynn I wish you all the best.....And I truly hopes it all goes smoothly for you.......barb :-)
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