Emmy 08/01/12
Last reply 6 years ago
First day of Tysabri!!

I’m going for my first infusion today! So nervous!! Any one else who is on it, I will REALLY appriciate any advice/info on what happens when you have an infusion! xxx

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Lillylilly
6 years ago

I’m not on Tysabri but just want to wish you luck x Think positive thoughts as it’s going in 🙂


grahamfraser
6 years ago

Hey Emmy i have worked with Tysabri and everyone says its fine no problems they all take a book or some thing like that they say the worst thing is the nurses taking your blood pressure lol you will be fine.


Emmy
6 years ago

Thank you!I’m hoping it will be the start of getting back to my old self! I came off meds so I could get pregnant and after 3 years (and a beautiful daughter!) I’m ready to get back to being a bit better! If anyone who has been taking it has any advice too that would be great :0)


Gav
6 years ago

I normally have a good natter with the other people are getting theirs at the same time.


CaptainKristoff
6 years ago

Hi Emmy, I’m just back from my second ever infusion. As far as advice goes I don’t personally think there’s a lot to give, I took my Kindle and put a few TV shows on my phone but both times I’ve just ended up chatting with the other people getting their “fix”!
Everyone I’ve spoken to whose on it though says its made a big difference in terms of relapse frequency and all consider themselves much better with it than without.

It’ll be a breeze so don’t be nervous!


Fchimienti512
6 years ago

Question for tysabri patients: I went to my neuro today and he discussed with me that I have new active lessons In my brain and spine, so after being on rebif for 4 years he thinks it’s time for tysabri. I’ve been told by some people that it is a great medicine, but reading all about tysabri im nervous about this new drug, so how are you guys doing on the drug and do you agree with everyone I’ve heard from as well. Thanks


Fchimienti512
6 years ago

Leasions not lessons got to love spell check


CaptainKristoff
6 years ago

Hi Fchimienti512, as I said above, I’ve only had two infusions, but whilst having those I’ve met 9 other people who’ve been taking it for varying periods of time.
I was speaking to a guy yesterday who used to have a relapse every few months but has now been 2 years without relapse. All others I’ve spoken to who’ve been on it for a year or more all say it has really helped either stop or massively reduce relapse rates. As I say, it’s only 9 other people I’ve spoken to but feedback from them has all been very positive.
The concern for me was the JC Virus, have you been tested for it yet? I tested negative which made the decision to take Tysabri a lot easier but the majority of people I’ve spoken to have been positive.


ultradeluxe
6 years ago

Hi Emmy,

My bf’s been doing Tysabri for almost 2 years now, and it’s been great for him – we were a little worried this past couple of weeks because his renewal TOUCH paperwork hadn’t been filed with Biogen, and he’s 3 weeks overdue for treatment, but feeling ok so far. It’s all sorted out now and he’s scheduled to go in tomorrow. If it works, stay on top of your doctor to make sure your paperwork is in order.

That said, he tells me it’s not a big deal getting the infusion; he usually just chats up whoever else is there, and sends me a picture of his arm with an IV in it =)


Fchimienti512
6 years ago

I tested negative as well but I am going Thursday for an second opinion but for the past 4 years I have been researching tysabri and many people I know who are on it say it’s great and I’m sure the neuro I’m seeing will say the same I have the enrollment forms ready in enter into TOUCH program and I’m sure I will be receiving my first infusion in the coming months

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