Help! 21 years old and about to start Tysabri!

A board to discuss the newly-released drug Tysabri, (formerly known as Antegren) as a treatment for Multiple Sclerosis

Help! 21 years old and about to start Tysabri!

Postby bighpfreak » Wed Sep 02, 2009 8:43 pm

Hi,

Hopefully I can get some help here about my issues with tysabri ...

After being diagnosed at 16, I tried Rebif, but I couldn't handle that after just 8 months and Copaxone didn't work after 6 months either. Literally my only options are Tysbari or do nothing. I've been doing nothing for the past year and I haven't improved at all. In fact, I've progressed so far that my neuro told me "if you don't go on treatment soon you are risking serious, permanent and irreversible neurological damage". which makes me feel just oh so great.

I've been trying to wrap my head around going on tysabri. Yes, I know that it works wonders! But I also know about the serious (but low) risk of PML disease. After not being able to tolerate the previous 2 drugs because I showed the "rare" side effects (Rebif started messing with my liver, which wasn't good. And I experienced the immediate post-injection reaction with Copaxone, and I'm not allowed to go back on that), I'm scared that I'm going to get PML.

Basically, I was just wondering if anyone had an information for me. I was also wondering if anyone has just gone on tysbari for a short period of time (I'm thinking 1 year) and then returning to a normal, drug free life. Ideally, I would love to live a drug free healthy life and explore non-conventional methods of treatment (nutrition, acupuncture, etc).

Thanks for listening to my rant! Any comments would be extremely helpful.

Take care.
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Postby Meegs » Thu Sep 03, 2009 4:59 am

Hi bighpfreak,

I was diagnosed at 23, started Copaxone at 24, was on it for 7 months then had 3 IPIR's that were fairly serious. Goodbye Copaxone.
Took nothing for 3 1/2 years, progressed and was suggested that Tysabri would be a good fit. It's now been 6 months (i go for #6 tomorrow) and I'm feeling pretty good. No more balance issues, i can feel my leg (that was numb for 2 years) and generally all is well.

That being said, i too had major reservations about going on Tysabri, I did a tonne of research and asked family, friends, my GP and my nurse friends... weighed out the pros vs cons and decided the pros were the better option.

All the best!
Meegs
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Postby bighpfreak » Wed Sep 09, 2009 9:02 am

Thanks a lot for your reply Meegs!

Looks like I'll definitely be going on tysabri. I'm still nervous about it (mainly the risk of PML) but the benefits the drug would provide are amazing. I'm hoping to see a lot of improvement and to feel better when I'm on tysabri.
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Postby Meegs » Wed Sep 09, 2009 12:33 pm

No worries bighpfreak!

Where abouts in Ontario are you?
When are you starting?

Be sure to keep us in the loop, we've all been there.

-Meegs
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Postby bighpfreak » Wed Sep 09, 2009 12:38 pm

I'm not sure when I'll be starting (my appointment is in October with my neuro, and then he'll give me the prescription and we'll get the ball rolling on tysabri then).

I'm in Toronto, but I'm not sure where I'll be receiving my infusion since I'm away at school.

Are you in Ontario too?
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Postby Meegs » Thu Sep 10, 2009 4:57 am

I'm in Toronto!
If you're here for school they'll probably set you up with on here.
Are you at U of T, Ryerson, York?
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Postby bighpfreak » Fri Sep 11, 2009 11:29 am

Sorry, I meant that I am from Toronto but am away somewhere else at school. I am in Waterloo which isn't that far from Toronto, but having to miss class for my infusions is not acceptable for me. I'm very determined with my schooling and I will not let my MS post-pone my graduation or anything like that. I'm hoping that the hospital in Kitchener is able to do these infusions so that I don't have to miss as much class.
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