PCV + what to do?

[johnsprincess]

Well I just found out I am PCV+ and now I have to decide what to do. From reading a lot of the past threads I know a lot of you are PCV+ and have done Ty anyway. How do you decide if that is right for you? I know that the risk increases or isn't likely to be an issue until the 2 year mark, but I am not sure which way to turn. On the one hand I am not really in favor of taking the risk as I know what the odds are and I know what my luck is like and I don't want to be that 1 in 1000(as I don't want any of you to be the 1), but on the other hand I live in fear every day that I am not treating the MS and could have another attack at anytime, or my progression is ongoing and I don't know it yet. Every other treament option doesn't seem right for me either, lots of side effects from the interferon, and I already have cardiac and sight issues so that leaves out the Gilenya. Can I ask how others who are PCV+ made their choice?

I am waiting to hear from my neuro as to her opinion, so I am at a stand still for now but wanted to be proactive in my options when she does call.
When we were discussing treatments my neuro mentioned that a new drug was going to be approved by the FDA in 2012 and that is what she really wants me on, but who can wait for the FDA, and then I was also reading about how the insurance companies might not pay for Ty if you are PCV+ in 2012......
Please offer my any advice you are willing to give! I know I am the only who can make my choice, but some outside advice would help me in making my choice.

[ru4cats]

JC+?

Johnsprincess,

Do you mean JC+, not PCV+? I haven't heard of the latter.
I am JC- for two years and for that I am thankful. However, even if I were JC+, I believe I'd still take Ty. It is the strongest DMD out there, and I believe it's worth the risk; however, I'm also almost 60 so my feeling is I have nothing to loose. The following chart might help with the decision as it show the risk.

http://1.bp.blogspot.com/-3v_Z3ZA2O4...Aug+2011.png:D

[0485c10]

When i made my decision i had this sense of a closing window of opportunity...try it now or never more..and even if i used it for only 1 year at least i would know if it was effective for me and i didn't get any side affects that make not an option for me.

the thought of me always feeling guilty for not having tried tysabri when i could have and then never knowing that i had some type of side affect that wouldn't have let me use it any way, just tickled my funny bone--think of all the years i would have felt guilty with out a reason.

I just had to try tysabri to know that at least.

The "rumor" that insurance companies may not cover tysabri for jcv+ people in the future, should give you a sense of a closing window of opportunity even MORE.

many of those types of things are "grandfathered" in.
those that have never used tysabri can't start with jcv+ status.

those already using tysabri before the "guideline" was established can continue and any side affects from prior tysabri use will be fully insured.

I would first listen to your doc recommendation, if she recommends starting tysabri i would for the above 2 reasons ...I need to know & i need to set myself up to be grandfathered in if policies change...

btw-=my state raised the drinking age from 18 to 21 when i was 19. It was nice being grandfathered in when i was 19 & 20. My younger sister was 17, only 2 years younger than me, when they changed the law. But she had to wait 3 more years before she could order a beer legally & my right to order was never disrupted from the new law. I became legal at 18 and stayed legal. Grandfathering is powerful. I do not remember the night after i earned my degree from school--but i think i had fun? I started the evening with some fun people.
my sister, i'm certain remembers the night she graduated better than me, but i am still sure i had a lot of fun!

started at an irish pub, after that i'm not sure, but i woke up in my own bed the next morning!.

[Hawkgirl]

johnsprincess, I know how you feel. I am JC- but I'm still worried about this decision. On the one hand, what a fool I would be to pass on a medication that might prevent further deterioration--which would benefit my kids. On the other hand, I'm taking a risk in lower my immune system, esp. in a house full of kids, and should I take that risk, considering I have kids?

And sadly money weighs in. I'm in that SMART or START thing, I signed some paper that I don't remember what it was, but then I got an email that made it sound like insurance will have to pay for it, and I will be Medicare D, so I will be paying a HUGE chunk for a while, and that is scary. I need to see some firm numbers.

This is just a scary decision, and being JC+ adds more risk. Def. talk about it with your doctor and your family. Pray about it. Roll it around in your brain. Think about what matters to you. I have had some devastating attacks where I lost my ability to walk or my ability to see, so we MSers have to live with the knowledge that we might be one attack away from ... can't think of a word. I don't mean death, but just ... something that would make your life miserable.

Or not. Isn't that the stinky thing about MS, the uncertainty?

Good luck with your decision! I hope more people chime in, so you can get more points of view!

[lindaincolorado]

I have known for 1 year that I am jcv+. I must have been somewhere around my 50th infusion. I believe in being pro-active in this lousy and believe Ty is the big gun in fighting it. If I had been on a previous immunosuppressant I probably would have felt different, as that would've been all three variables. Or I would've been even more vigilante in watching my sx.
I am VERY grateful for what Tysabri has done for me