Shayna, sorry you are upset by a doggone blood test that should be simple.
I could not get it done in CO-my dr wouldn't be a part of it. I don't think if the dr is willing that it's that big a deal for them to register

Do you have a case manager with Active Source-he usually can help me more than just talking to the rep that answers the phone. Since I spend winters in AZ it was important to get all my ducks in a row for the switch-he made it easy and now anyone I talk to can accomplish it.

Good luck with CA
Linda

I have a Senior Tysabri Leader at Biogen who is trying to find a place for me to have the blood draw. My neuro wanted to be part of the study since she has many patients on Ty but Biogen and their rep made it impossible for her. They constantly changed their mind about how things should be done, what order they needed to be done, etc. It's hard to believe that there is no one in the entire state of Nevada who can do the blood draw.

It's ridiculous. The lab kits are provided by Biogen and after the blood draw they are returned to Biogen for the testing process. I don't understand why it is so difficult My neuro wasn't the only one in Nevada who gave up.

Thanks for your well wishes, everyone. I'm leaving for California tomorrow and I will be there for 2 weeks. Perhaps I'll be lucky and Biogen will find a place in central California for me to be tested. I'm keeping my fingers crossed. I would even be willing to go to southern California if it was in the L.A. area. It's a long drive but it would be worth it for piece of mind.

hugs,
Shayna

hi all. i finally got into see barrow neurological ms clinic and dr okuda wants to start me on tysabri so i hope this helps. they said it may take up to a month, drew some blood for the jcv testing etc. wish me luck!

after reading about everyones troubles, plus the potential side effects, i am going to call dr okuda on monday to see if i can get the oral meds instead. i hate needles and infusion sounds like a horrible way to spend a day :/

I am The infusion takes 1 hour then you stay for 1 more hour to make sure you don't have a rough side effect (I haven't heard of any in the hour after but some need Benadryl while being infused). Pretty sure the troubles you've been reading about were those trying to get tested for the jcv, which you've already accomplished. The side effect of pml is almost not existent for the first 2 years.
I am not trying to talk you into Tysabri, just wanted to clarify some of your info
Linda

i'm more speaking of the problems with veins getting shot etc. i hate needles, especially if they hurt. when they took my blood to test fior the jcv antibody they had a rough time finding a vein. i can handle an iv, how does it compare to that?

I, too, have issues with finding/getting a vein I have found that if I hydrate well, keep my hands/arms warm and tell the person doing the infusion that I have deep/rolling veins (and then she listens ) that it usually goes well!!

Good luck with whatever you choose.
Linda

Clark, first of all, welcome to the Tysabri thread.
I had my 46th infusion today, piece of cake when I compare it to giving myself a shot, whether it's daily, every other day, or once a week!

Infusion is the same as starting an IV because it IS an IV. It's called an infusion because that's what you are doing with the drug, infusing it. They start you with saline solution, then start the drug, then you go back to the saline for the observation period. If you've ever had steroids, it's the same procedure except for the wait time for observation afterward.

Most infusion centers will have lidocaine on hand to numb the area, They use a tiny needle and they inject a tiny amount of lidocaine under your skin where they are doing the stick for the IV and wait a minute or two for it to numb up and then go for the IV stick. Tell them you have pain and needlephobia and ask for the lidocaine if they don't offer it.

It took me 2.5 hours today from start to finish.

It sounds like your doctor is already a part of the JC study and that you won't have any trouble with testing for PML. A lot of us have been on Tysabri since before the test came out for the trial and some folks are having a hard time being tested.

Good luck with whatever you decide. Let us know how it goes!

I still read the tysabri posts from time to time because I am still occasionally bitter about my experiences with it. I was just going to mention that my neuro's office never had me stay on the saline during the observation period. Is that part of a new protocol or was it always supposed to be done that way?

I usually get the saline to flush the tubes of Ty so I get it all. When i'm lucky, the nurse just flushes with 2 50ml maybe? syringes and i'm out the door. I'm still progressing rapidly so honestly Copaxone worked as good if not better. I hate the shots so I might just keep fading on Ty.