I saw my neurologist today and found out that FINALLY my clinic is testing for the JC virus antibody as part of the Stratify trial. Yeah!! It took them forever to run through all of the paperwork because they are affiliated with a medical school and have to abide by more stringent research protocols. They started testing yesterday so I was patient #12 out of a future 500. I hope that 12 is my lucky number. If I am negative then I will stay on Tysabri. If I am positive he wants me to switch to something else since I am having #27 next week and it's been almost 3 years since I've been on the drug. The only other option for me is Gilenya.

I asked about measuring CD4 cells. He said that some of the studies regarding measuring counts of CD4 cells, CD8 cells, and the ratio between the two and their connection to immune suppression and the JC virus were done at the medical school here. He felt that measuring these counts can't provide any useful information that will help those on Tysabri. He does, however, feel more positive about the JC antibody test after talking with Biogen and the researchers (as opposed to the last time I saw him).

Anyhow, keep your fingers crossed because I want to stay on Tysabri!! I get the results in 4 weeks.

PS: They are running spinal tap research tests and looking for people to participate in their studies. They will pay you $200 for every spinal tap you give them. Hmmmm.....is it worth it?

good luck natalie! also, $200 s not nearly enough to undergo a spinal tap imo. $2000 maybe...

It's good to hear that you are finally able to get the antibody test Natalie. Here's hoping that you are negative!

As far as having an LP for $200.00, no thanks! My experience with the only one I ever had put me off them for the remainder of my life if I have any choice in the matter!

Hope all is well with you!

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.

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.

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.



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.

Natalie, I had 1 spinal tap and I hope I never have to have another. However, if my family was hungry and I didn't have the money to buy food for them I would consider a LP for $200.

I'm keeping my fingers crossed for you. I hope you test negative!!!!!!!!

Daisy, I'm so sorry!!!!!!!!!!!!!!!!!!!!! This is going to be a hard decision for you to make My neuro doesn't do the CD4 test. I asked about it once and she said that the test results would be affected by the fact that I'm on Ty every 4 weeks.

Kara, welcome to the group. Infusion #43 is coming up at the end of this week. They consider me a "hard stick". My feeling is that if I find someone who can hit my vein that is the person I request. I think I have the right to do that and I wouldn't go off of Ty because it was inconvenient for the infusion center. Is your dr really that strongly against having another dr put the needle in your hand???? Perhaps if you talk to him about it he will see that it is easier for you and this is the medication that you want. Good luck!!!!!!!!!!!!

I have my infusions every 4 weeks. I've tried going longer and it just didn't work for me. I need Ty every 28 days.

RW, how long since you had the JCV test???? I'm curious because I had mine just after Thanksgiving and I have been told I will be tested once a year. I'm the only one of my neuro's patients on Ty who tested negative. But, most have decided to continue with Ty because it has helped them so much.

BTW, I still have the sinus and double ear infection. But, at least I'm getting my Ty

hugs to all,
Shayna

Hi Kara, sorry for your troubles
I will have #54 Friday. Some nurses consider me a very hard stick others get me the first time. I have learned to drink fluids, keep my arms and hands (sorry they won't use your hands ) warm and tell them my veins are deep and rolling (I learned this a couple years ago from a nurse).

As for how long can we safely stay on Ty. I hope I will be on it until I no longer need to be on it.. a neuro at the RMmsC (Colorado) said that when you reach a certain age (65) for some ms stops or that something better has come along. I monitor my status-pretty vigilante... I pay attention to how I am keeping in mind signs of pml.

Tysabri has been/is a blessing for me !!!!!

Best wishes
Linda

Shayna, I was tested in Sept 2010. I am pretty sure the doc said another test in 6 months, and that will be at this month's appointment. It should have been last month but my appointment was rescheduled.

Sorry to hear that you are still dealing with the sinus and ear garbage! Get better soon!

I had #27 today. It was nice -- had a room entirely to myself which I like very much. I can nap, talk on the phone, read, snack etc. and not have to deal with anyone else. And this time I was an easy stick. The last couple of times the rolling veins have caused some aborted attempts. This time post-infusion I'm not feeling perky -- nausea, headache, low grade fever, general blahs. But I expect by Sun. I will be up and going!

Now if only my JCV antibody text comes back negative. I should know in 2 weeks. I really hope this isn't the last Tysabri or I will be so so sad.

i had infusion #4 yesterday, tired me out, but otherwise feel ok. had problems with the stick again, i told the nurse where the guy who draws blood always gets it but she proceeded to stick me everywhere but, until she decided to believe me and got it easily. she apologized and said next time she will listen to me...

feeling tied today too, its cold and rainy in mesa az

Hey Clarkstar, I just had #54 yesterday at Banner Desert. My gal got me on the first stick I hydrated and wore a jacket so my arms stayed warm-I do what I can to help.
I will be going back to CO shortly and not coming back to AZ as my life is changing. I have lived in AJ, winter visitor.
I hope you do great on Tysabri
good luck
Linda