NeuroTalk Support Groups - View Single Post - Tysabri Check In, Support and Information Part Three

Riverwild · 03-30-2011, 08:45 AM

Quote:

Originally Posted by SallyC

River, you are going to keep getting tested, right?

Congrats on 4 good yrs on TY.

I get tested again next month, Sal. Hopefully the next test comes back negative too. I am still the only patient with a negative result out of all the patients tested in my neuro's practice.

Quote:

Originally Posted by clarkstar

hey river, are you still on every 4 weeks? many i speak with at my infusion center are cutting back to 6 and 8 week intervals after a couple years

Mike, I am sticking with the every 4 weeks as prescribed. It's worked for me so far and I don't want to mess with what works, since I haven't had any problems.

Quote:

Originally Posted by Kara1234

Hello All. I am new here and I am looking for all you fellow Tysabri users. I live in Germany (husband was transferred for work 20 months ago) so I am looking for some English support. Do not know many people that have been on Tysabri as long as I have. I love it, no reactions, and I have been stable for over 4 years.
yesteray was #54 and it took 6 times to find a vein. It freaked me out. I already have a hard time when I have to go to the hospital to test for blood. They always have to go to a few veins to get more than one vial to test from me.
My doctor here said I should start looking into Fingolimod the oral medication since I am having issues. So again stressing me out! Change medicine in another country.
The doctor that I go to only does the vein in the arms, no the hand. On the 6th attempt they sent me to a different practice to have the doctor put the needle in my hand and then I walked back to my doctors office and had my medicine.
How long can we safely stay on Tysabri? So many questions!!!
Thanks!!

Hi Kara and welcome to our Tysabri forum!
I hear you on the sticks! I give the nurses two shots at it and then a new one comes and does the stick.

Are your issues only with them hitting the vein or are you having other problems with Tysabri? I believe you can have a port inserted if needed. That way they only have one target!

Have you had the test for the JC antibody yet? It's said that if you are negative to exposure to the JC virus, that you can stay on Tysabri indefinitely if you are doing well. That is what I am doing for now since I haven't had any problems or relapses since I started, and I tested negative for exposure to JC. I ask about the test because I am not sure if they are doing it in Germany, they are doing it here in the USA but I can't remember whether it's happening in other countries yet.

I am at 50 infusions now, and have only missed one. I had an emergency appendectomy and didn't want to throw Tysabri on top of the mix of drugs I was on since the infusion was due two days after the operation. I resumed infusions the next month with no problems.

Quote:

Originally Posted by daisy.girl

I got a call from my neuro yesterday.

I tested positive for the JC Virus.

Also, my neuro monitors CD4 T-cell level on all his Tysabri patients. My baseline was high....over 2000 (range 490-1700).

Anyone else have their CD4 cells monitored?? ...

Hi Daisy! Sorry to hear that your results were positive. It's got to be hard to have to start over with treatment decisions again.

My doc doesn't check CD4/CD8 counts. It's his opinion that general health and wellbeing, along with relapse rate and progression of disability are better predictors of how patients are doing, since we already know that CD4/CD8 counts are affected by Tysabri. He did check one time at my request and I was within normal range when tested.

Let us know how you are doing and what you decide to do. We're here and we are listening if you need to talk.