Anyone JC positive on Tysabri?

[Hlawman]

I just found out that I'm JC positive and not sure what to do
now. I was diagnoses in August 2013 and have only been on Betaseron but made no improvement actually my symptoms have worsened. I don't think I've relapsed at all just the medicine didn't agree with me. I was told that Beta was one of the more effective injectable so now my neuro wanted to go ahead and do Tysabri. Now I don't know what to do. I'm 23. My MS hasn't disabled me physically but I get horrible cog fog everyday(to the point I where I can't drive), get fatigued easily and have burning pins and needles in my legs almost constantly so I have to take pain meds( which only help to a certain degree). Ms has taken over my life these last few months. I don't know if I want to take the 0.4% chance of getting pml. If anyone is JC positive and on Tysabri I would like to know how you made the decision. Thanks in advance!

[22cyclist]

Hlawman: There are many people on Ty that are JCV positive. I am not so I will defer to them. However, you need to go by your JCV index number and that will tell you where you are on the spectrum of how JCV positive you are. If you have already done that, then you already know.

You may want to repost this in the medications section under Tysabri.

Good luck

Lisa

[Stacer]

jc +

I am JC +. I have had 60 infusions. I found out I was positive a few years ago. My MS progressed quickly over a year period after I gave birth to my daughter. I started copaxone and took it for 7 months, but it didn't help. Tysabri stopped my relapses it seemed. I felt like for me, it was a bigger risk to stop tysabri and take my chances with another relapse than it was to get PML. Both crappy choices. It's not an easy one. I don't know where I stand on the index for JC spectrum. I took the test a few months ago, but I haven't got the results yet.
Good luck to you!

[GardeningMSer]

On T with positive Antibodies

HLawman,

I had about 5 years of infusions when my neuro ordered a JC test, I had a detectable level of antibodies and went on Gilenya in late 2012. The test at that time was not quantitative - it showed ab's but did not measure the level.

The Gilenya did not slow my slow decline, and my energy level went down. Around October 2013 she asked me to get another test and these results showed I was positive with a low level.

I'm back on T and very happy and stronger.

G

[Marco]

I'm JC+ and elected NOT to go on Tysabri. I do believe Tysabri is, or equal to, the best treatment that we currently have, but being JCV+ I have a finite time before being cautioned to go off of it. That leaves me a 24-month window to be on Tysabri. I've had significant progression over the past several years, but it seems like Tecfidera has reduced the progression. I have a neuro appt tomorrow and MRIs within a few months that will also weigh-in on Tecfidera's result. I am fully aware that Tysabri is more effective than Tecfidera, but also realize the increased risks. Tysabri is basically the "backed into a corner with no where else to go" plan. I never want to go on Tysabri, but only because I hope Tecfidera controls my MS until something better comes along; a cure, stem cell, or drug without a potential side effect of death.

I know a lot of neurologists are suggesting Tysabri as soon as possible --- but then what? What happens at the 2-year mark? What medication would you them go to? The use of Tysabri may also limit future medication choices. I honestly still struggle with this issue. At times wish I was on Tysabri, but then I look at my wife and I know why I picked and will continue to pick Tecfidera.

You and you alone can ultimately make this decision. The good news is we have more medication choices today than ever. I wish you well and hope others can respond with more wisdom and knowledge than I have.

[Hlawman]

I have also thought about what would I do after the two year mark. My neuro is an ms specialist who runs several clinical trials and he does tons of research on MS. His mother died from complications of MS so his sole purpose of becoming a doctor was to try to find a cure. So I also wonder, " What new medicines might be available to me in two years?" This is a very hard decision to make because I also have a husband and a 20 month old little boy. I really think at this point I'm willing to take the risks of Tysabri because right now my MS is preventing me from being the wife and mother I "need" to be. My husband is doing everything and I really don't know how much longer I can stand the guilt of not contributing to my family.