To Ty or no....???

[OhioKris]

My dr has recently suggested Ty after two relapses in 6 months. Lab work back that says I am JC+. She indicates I can still go on it. Gave me the 1 in 1000 spiel. But obviously my choice.
am I alone in being terrified of those odds?!?!?
Have been reading alot of posts, but would appreciate hearing how you made choice, especially if you are already jcv+.
Thank you,
Kris

[LL60]

OhioKris

Wow. I am reluctant to even post to you. This is such a hard decision and one each person has to make for themselves. This is a HUGE decision.

This is how I made my choice to stay on Tysabri, since when I first started there was no jcv test or titer tests.

Before Tysabri I was on Copaxone and noticed not a bit of difference. It helped not one of my symptoms.

I was on Tysabri 3 months when I noticed a difference. Shortly after that I did have a relapse. I have had only one since then. I have been on Tysabri 4 1/2 years. I have no side effects at all. Most of my MS symptoms are not outwardly present. No more falls. No more MS hug. No more tingling and numb arms or legs. I do still have terrible fatigue. I have to change my definition of "normal." I am adjusting daily to not being able to do nearly what I used to do. I do still work. Only one job. I did two for years.

I do still have some cognitive problems. But nothing like before Tysabri. It's like night and day. I can almost forget I have MS. And actually don't think about it a lot. I have to sort of plan life around 28 days, but that's fairly easy to do.

For me it's a question of playing the numbers or stating facts. It is a fact that Tysabri has been like a wonder drug for me. Do I want to take the gamble of what it would be like to go off of it. Not at this time.

But here are some numbers.
(you need to know what your titer (index) numbers are)

JCV index less than 0.9, your risk of PML in the first 24 months is 1:10,000
JCV index less than 1.1, your risk in the first 24 months is 1:10,000
JCV index over 1.5, your risk in the first 24 months is 1:1,000

My risk is about 1:187 from information I have at this time.

the average risk of my getting heart disease is 1:5
the risk of getting cancer is 1:7
the risk of having a stroke is 1:24
the risk of getting a hospital acquired infection is 1:38

Talking to people who have PML, talking to people in your life whom you trust as a good sounding board, where you are at in life, the beginning, the middle, the last adventure, if Tyabri is helping a little or a lot, how bad your MS was(is) and how well you can deal with your symptoms. These are things I had to go though and ask.

For me it has been fairly easy to stay on Tysabri. I'm not a gambler at all and just don't want to take the chance of going back to the way things were.

My titer number has gone down and I wasn't sure what I would have done if it had gone up. For now, I am staying with what has been close to a cure for me. That may change. For today I am comfortable with my choice.

Rocky Mountain MS Center did a wonderful article on risk and MS meds. That is where I got some of the numbers I quoted to you. Another good website is slideshare. It has a lot of graphs and charts and in fact I have printed out some of them to take to my doctor. People here share information too and they have given me wonderful information.

Take your time. And I am sure you and your doctor will revaluate often too. You can always stop infusions if you change your mind. Tysabri is the best med out there at this time. It does have the huge side effect of possible PML. Not to be taken lightly. But........we do things daily that put our lives in danger. Just getting in the car each morning is taking a chance that you will arrive at work safely. We just don't think about it like that.

FOR ME. For me. How it has been only for me; I can share that Tysabri is awesome. So glad I went on it. And, for now, I am staying on it. But I try to stay very up to date on everything Tysabri. Which can be hard at times. But you do have to stay informed.

[KatieAgain]

Over two years ago, it was recommended by my then MS Specialist that I should go on Tysabri. I was JCV-, and like you came to this board for guidance. Even though everyone was telling me to go for it, I said no, for two reasons. 1. I was too scared and 2. I was simply not ready for it.

I wanted to keep Tysabri in my back pocket for when I really truly needed it. Well...that time came late last year...I was seriously sick. My new MS Specialist said, I must go on Tysabri, even if I was JCV+. I looked at him and said "Yes, it is time." Absolutely no hesitation on my part. At that time, I did not even know I was still JCV-.

I was in pretty bad shape and my doctor, Biogen, my insurance, and the Cancer Center where I get my infusion fast tracked the process.

I was so scared the day before the first infusion, I think I made a comment somewhere on this Board that I would rather go to Iraq for a year and everyone here helped me through it.

But I was committed, I had no other choice. And for me it has been the greatest blessing. All the Doctors are amazed at my body's reaction to the drug.

A lot of people say one can never get better with MS. I did. How long will it last? Who knows...I am just out enjoying my life to the fullest while I can.

So, is it the right time for you? If you are struggling with the decision..then there is a reason.

Wishing you the best.

[dyin_myelin]

It's a calculated risk. I looked at efficacy, JC stats, and side effects and figured it was not only the right thing to do, but the only thing. I'm still relatively young, so I worry about long term effects. Even everyone's risk-adverse go to shot, Copaxone, has been linked to breast cancer. Getting cancer is one of my biggest fears.

It saddens me to see how much my insurance is paying, twice what my salary is. I spend the whole infusion with my nails dug into the ceiling, even though my risk is 1 in 10,000 when the dice are on the table your imagination goes. Also think liver, adverse reaction, neutralizing antibodies, etc. Going to the hosp. reminds me how sick I am. Some people sleep through it but not me!

Still, my brain is the locus of who I am, and I owe it the best that I can do to keep it uninjured. It doesn't knock it out of the park, but maybe it will buy me some time for a breakthrough of some sort. I remember reading about Lorenzo's Oil (there's a disclaimer on the website because MS people think that since the oil cured a demyelinating disease it can help them too) and know that sometimes there is that breakthrough moment.

[OhioKris]

Thank you all for your kind replies!!
I was diagnosed in 2004. Went 8 years on no drugs and took the route of an MRI once a year. That worked for me. No relapses, just the normal fatigue. You learn to listen to your body with MS! LOL
A year ago, new dr insisted I be on something so I elected the one with the fewest side effects and long term studies. Copaxone.
No side effects at all and stayed on faithfully for nearly a year.
In early 2013 I was sick with other things and couldn't be bothered with shots too so I went off. 6 months later q, optic neuritis. 5 months later two new lesions and more vision problems. Dr says tysabri.
I determined beforehand that if jcv was negative, I was going for it.
Now that I'm not in that boat, and know I'm 1 in 1000, I am not so certain.
My only issue keeping me from work right nowdis vidion but that has began to improve.
I do think I'll pass on the Ty for now and kerp it kn my back pockrt for later!!
I am happy to hear its worked so well for do many.
Thank you all again, it's so appreciated!!
Krid

[dyin_myelin]

If anyone wants an infographic to understand the risk/benefit:

http://www.slideshare.net/gavingiova...ion-march-2013

[LL60]

OhioKris

It is nice to know that us MSers do now have options, wasn't that long ago that we didn't.

Glad you came to a decision. And you are right, Tysabri will be there if you need it later. And who knows what else may be coming along. There are a couple of new ones in trials. And there are drugs being developed to rid the body of the jc virus. I myself am really hoping they hurry up with those!

dylinmylin
I smiled when I read what you go though for each infusion. I don't feel like it bothers me at all. But my body tells me it does a little, my BP is always up when they first take it. A few minutes of meditation and it goes back to normal.

[PJ Bahr]

JC ?? JCT??

Sorry to sound so lame, but I have no idea what JC or JCT is…….. was diagnosed with MS 08-25-95.

THANK YOU!

[Kimba22]

Hi PJ Bahr,

That is a good question! JCV and PML are acronyms used frequently in discussions about Tysabri. JCV stands for the JC Virus (John Cunningham Virus, named after a patient who had contracted it). This virus is responsible for something known as PML (Progressive Multifocal Luekoencephalopathy), which is a debilitating and/ or fatal brain infection.

This virus lies dormant in a large percentage of the population, and is not a threat to healthy individuals. It can be reactivated in those with compromised immune systems, such as those with AIDs. It has also reared its ugly head in some MS patients (namely, those on Tysabri). More recently, a few cases from patients on Tecfidera and Gilenya have arisen, but those patients also had other factors present, which caused them to be susceptible. (You don't get PML just because you have MS.)

There is a blood test that was approved to test for the JC Virus in 2012, so that's why you'll see mention of JCV+ or JCV- (positive means you have the antibodies for the virus, negative means you do not.) There is even a newer blood test, that tests the amount of antibodies present if you are JCV+. This "titer" helps determine your risk profile for contracting PML if you are JCV+. Some other factors that also increase your risk for PML while taking Tysabri include the length of time on the medication and prior use of certain medications.

This testing is important if you are taking Tysabri, because of the risk of PML while on therapy. You contract PML because the JC virus is present.

I hope my explanation helps you better understand what we're talking about the next time you see these acronyms.

Take care,

[Tomjadg]

What LL60 said.

It is a personal decision, and like you did, people need to educate themselves and decide what is best for them.

I am a positive (3.7)(as most peope are) but decided to stay on Ty, and get it every 6 weeks instead of 4. I also get a brain MRI, and have it checked before each infusion.

I am lucky enough to have insurance to cover it.
I did Rebif first for 7 months, with a steady decline. Just did #32 of Ty.

Kimba gives a good explanation.