I had #91 today and blood test to check my jcv titre-Dr wants it checked every 3 mths
Linda

I recently found out it is .23 not negative but, down from .28 and certainly holding

had my 2nd infusion in february, saw my neuro dr in detroit last week. all is well, not currently in relapse

Lynn, I've been on Ty for almost 7 years. The infusion nurse asked recently if I would consider a port. I really would prefer not to since I know one must be so careful not to get it infected or clogged.

What have you decided about the port????

BTW, I'm having my infusion drawn out to 1 1/2 to 2 hours and I really am having less side effects. It's been great!!!!!!!!!!!!!!!

I hope all are doing well

hugs,
shayna

Hi Shayna

Have a look at my post on the main MS forum - I had the port put in three weeks ago, and used it successfully for the first time last week. It was so easy.

Yes, you do have to be careful not to get them clogged or infected, but mine is entirely under my skin (so they pierce the skin when they need to access it - but the needle only has to go through a couple of layers of skin and then into the silicone part of the port so it didn't hurt me at all). Each time, before and after use, they flush it with saline and heparin to make sure it doesn't clog. The nursing staff were extremely conscious of using aseptic precautions as well.

Are you JC+ or JC-? That was my biggest consideration when I had to decide whether to go with a port - how long I would have it. Since I am JC+ I may decide to quit Ty any time, but I am glad I went this way.

Shayna, I've had my infusion run over 2 hours instead of 1 hours for several years now. It makes all the difference in the world in terms of side effects!!! I love it.

I am lucky enough to have never had side effects from Tysabri - even over one hour - maybe that's why I love it so much (compared to Beta for 8 years of misery)

Here's a newish (2013 or 2014) article on Tysabri, PML, and the JCV antibody test.

http://www.medscape.com/viewarticle/820968_4

I need to ask my doctor about this study of 67 people where they checked blood with urine and said the false negative rate of the JCV antibody test was 37%. Okay that seems scary to me! Linda, I wonder if your doc wants you to test every 3 months because this article suggests testing every 3-6 months.

There is other useful info in here as well including stratifying risk based on titer levels. It's worth reading.

I read the article because it was suggested on another ms site. I think the # of participants is small. I did e-mail my Dr about this study-haven't heard back I don't think this is why they want me tested every 3 mths but, who knows

Linda

Thank you for that, it was really interesting - here in Australia, they don't even stratify PML risk with a number - my Neuro is looking into that, I was talking to him about 'informed risk' last time I saw him. I hope things change here.