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Tysabri Anyone?

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Multiple Sclerosis
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Posted Today 8:17 AM (GMT 0)

Hello Everyone,

 

I am new to this forum and have just been perusing previous posts to get a feel for information that you all have shared.  This seems like the place to go for any questions that someone might have or just get some support.  I feel very fortunate to have happened upon Healingwell.com.  Thank you ahead of time to everyone that I "meet".

 

I was diagnosed Feb. 1, 2000 by MRI and spinal tap with RRMS.  My sister has it as well.  I am worried about even vocalizing this, but I have been very fortunate thus far with minimal problems - correcting most of my symptoms with IV Steroids.

 

I may have just not quite gotten the hang of this website, but I was very surprised to not find one thread about Tysabri.  I did not tolerate Avonex and have recently had my first infusion of this new drug.  In two weeks will be number 2.  Has no one with MS dared to start this drug since it has been reintroduced?  I am just curious . . . and more importantly wanted to introduce myself and say "Hi".

 

Thanks!

Numerously Blessed

 

P.S.  Does red offend anyone or cause problems with reading in any way?  I find it easier to read myself but probably not everyone would.

Posted Today 11:44 AM (GMT 0)
I'm not on Tysabri.  I've been on Betaseron for 14 years, now, and it seems to have significantly slowed the progression of my MS, so I'm thinking, "If it ain't broke, why fix it??"  tongue    If, for some reason, the Betaseron became a problem, I'd likely consider Tysabri.

Welcome to the forum, by the way.  :-)

Posted Today 5:17 PM (GMT 0)
Hey Numerously Blessed

Welcome to the board! I'm glad u found us and hope u'll post as much and as often as u like. I'm not dx'd so, of course, don't use any of the meds for ms. I really just wanted to stick my head in and say hello to u. Hope to get to know u better soon.

rhonda
Posted Today 6:55 PM (GMT 0)
Hello-

I haven't been on this website in a while, but came back to find information on Tysabri.  I will get my first dose any day.

I have read several really good reports on Tysabri.  I have had MS for almost 20 years, was diagnosed at the age of 17.  I had been taking monthly steriod IVs for years, but they aren't working anymore.  That's why I want to start Tysabri.

Does anyone have advice on the cost?  It looks like there are minimal side effects.

Did this seem to make a difference being as you have only had one dose so far?  I am glad you brought up the subject- hopefully more members will offer advice (for both of us) :-)

God Bless....

Posted 12/2/2006 12:20 AM (GMT 0)
Hi Numerously Blessed,

 

   It's very nice to meet you and its wonderful that you have minimal problems with your MS  :-)  We have had some discussion about Tysabri in the past but on this particular forum we don't seem to have many people on it right now.  Hopefully someone will be able to provide you with some information on it.

    My husband's neuro did mention Tysabri to us on his last visit actually, and if Copaxone for some reason stops working it might be something he would consider trying.  It's always great to have options!  I wish you the best of luck with it, and I would be most interested in hearing how it works for you. 

 

    You had asked about text color.  Those who have optic neuritis seem to find that blue text is easiest to read, but post in whatever color you like :-)  

    Take care and I look forward to getting to know you better. 

 

Kimber       

Posted 12/2/2006 12:34 AM (GMT 0)
Nothing I can add, im on copaxone, been just a lil over a month since i started it. People ask me, do ya feel different now? I have to chuckle, and say not really. The only feel better/different im feeling is that at least im actively doing something for the long term by using my meds everyday. But to most they just dont understand lol Ohh and welcome, forgot thats what i was originally gonna post hehehe
cyndi
Posted 12/2/2006 9:23 AM (GMT 0)
I would just like to thank you all for such kind words. I will be frequenting this site as much as I can. I have two boys (4 & 2) and don't get much down time for myself. I am sure that many of you are in the same boat.

I am curious just how well you all know one another?

Thank you again. It is nice to know that their really are people out there that understand. My sister and I talk about that fairly often about our husbands' lack of true understanding . . . though we both have pretty great guys!!!!!

-Numerously Blessed
Posted 12/2/2006 10:05 AM (GMT 0)

Hi, 19447BW

Long story hopefully somewhat short . . . I tried Avonex which I mentioned before and had no strength (could not even pick up my baby for at least 2 days) and debilitating headaches for 5 days just to turn around and get stuck again.

My neurologist started giving me monthly IV Steroids while we waited to find out about Tysabri.  I didn't want to lose the efficacy that the steroids had proven to have had for me.

My first Tysabri infusion was a breeze!!!!!!  I loved the entire experience (well as much as one can with a needle stuck in their arm for over an hour - really no different than my IV Steroids).  My infusion center was amazing from staff to comfort!  I had a headache for about 3 days maybe but nothing compared to after the Avonex shots.  I feel I have found the drug for me.  You asked if I feel a difference?  Not really but I am not in the middle of an attack right now, but I have spoken to others who were on the drug before it was pulled and said it was a wonder drug.  Walking with a cane to no cane kind of difference.

As for cost?  No idea.  I do know that Anthem BCBS only will approve the drug infusion if a doctor is on site. 

Good luck to you.  I hope that you find Tysabri as easy of an experience as I did. :-)

-Numerously Blessed

19447BW said...
Hello-

I haven't been on this website in a while, but came back to find information on Tysabri.  I will get my first dose any day.

I have read several really good reports on Tysabri.  I have had MS for almost 20 years, was diagnosed at the age of 17.  I had been taking monthly steriod IVs for years, but they aren't working anymore.  That's why I want to start Tysabri.

Does anyone have advice on the cost?  It looks like there are minimal side effects.

Did this seem to make a difference being as you have only had one dose so far?  I am glad you brought up the subject- hopefully more members will offer advice (for both of us) :-)

God Bless....

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