How many of you are JVC+ and on Ty?

[Stacer]

LL60

Sorry....I gave you wrong info. I am JC +

[LL60]

stacer-
Were you able to get into the web site?

50 infusions and JCV+, but with no prior immunosuppressant use would be 1 in 192. Same as mine is. These number are accurate as of Feb. 2013.

I talked to Biogen this afternoon about the MRI guidelines. They have none, it is up to the doctor. They always say that.

Are you aware of the signs of PML?
There are youtube videos about a women named Angela who has been fighting PML the last couple of years. She hasn't updated in awhile, but does give you some idea of what people go though. It is a very bad thing to get.

The signs of PML are many of the same for MS, so you have to really know your body. This is how my doctor talked me into getting tested. So that if I went to the ER with symptoms not typical for me, that they wouldn't just fluff it off as a MS attack. Made sense to me.

[Stacer]

thanks LL60

I was more under the impression that it was 1 in 500. Remember a few years ago, there was speculation that the risk actually went down after being on it after 3 years. I haven't heard anything claiming that lately!
My family is very informed on the signs of PML. Likely, it will be them to notice changes in me. The thing that scare me lately is my feet. They are getting more numb and weaker, making walking next to impossible.
I know Angela. We have been connected on facebook and Youtube before she got PML. PML scares me. MS scares me. No easy decisions with MS.
The Tysabri Care program in Canada came up with the every 6 month MRI, I believe.
Thanks for the info!

[LL60]

That's whats great about these boards; the sharing of information.

Information changes so fast. It is hard to keep up. At the NMSS talk with Dr. Vollmer he said we can't leave it up our doctors, we have to stay informed and then share information with our doctors.

Someone here repeated that there have been no cases of PML after 71 infusions. I have a ways to go to reach that mark, but I am sure that will change too as more people stay on it long term.

Thanks for the info about Candian using 6 months as a guideline, I will share that with my doctor. Know the VA in the US does them every 3 to 6 months.

I have exchanged a few emails with Angela since I order her cards, Flowers4MS, and she has made me stop and think about the risks more than my doctor or reading anything about it.

It is just that it works so great for me. And all you may or not go though to go off of it. And once I go off, I know I would never get my doctor to put me back on it. I have some minor problems with foot drop, but not bad. I hope you can find something that works. New things are coming out all the time.

[REG53]

LL60- Thank you for the website infor.

I have had 75 infusions, am JCV+ with no immunosuppressant so I would be considered 1 in 192 now.

Months ago my neuro told me 1 in 250 which I will discuss with him.

Stacer- in my neuro's group there is one that believes that someone in my range would be 1 in 500 but my neuro does not believe that. I have not seen this in any report but I have heard this but even 1 in 500 still scares me.

[LL60]

Reg,
You're welcome. Glad you could get in. These are the exact same charts that did use to say 1 in 250, then it went down to 1 in 217, and then to the 1 in 192.

[lindaincolorado]

Thank you ALL for the info .. it is so important to be informed. This site and you wonderful people are such a gift

[Myoak]

Thanks LL60 for posting the PML risk update. For those interested click the slide show at:

http://www.slideshare.net/gavingiova...-february-2013

[LL60]

In case anyone is not getting this information, I thought I would pass it along. We need to stay up to date on things.

As of May 6, 2013 there have been 359 confirmed cases of PML worldwide, 123 of those in the US. 83 deaths from PML have been reported which is 23%. The death rate is slowly inching up. I would like to know some reasons why, but just can't find anything on this. I do know that those who have frequent MRI's and have caught PML before symptoms have shown up have a 0% death rate.

My doctor does them every 12 months and I am fighting to get them every 6 months. It cost me $500 each time, but I feel this is worth it.

This is a great drug for me. Has been as close to a cure as I'm going to get. But I do want to stay aware. Getting information can be a long drawn out thing at times. So when I get some information, I want to share with all of you.

Anyone know anything too, please share.

[fishead]

How long are you willing to stay on Ty with being JCV+?

I've had my 6th infusion(I am JCV+) and Im starting to wonder if this was a good move. Don't get me wrong...I love Ty, have no problems with it and it has made me feel "normal" again. I just always have this worry in the back of my head about getting a brain infection.

Moolk,
I was JCV+ when on Ty and I did not want to stop taking it either. It is still a rare issue, even when JCV+.

[LostCupcakes]

I am JC+ and my first infusion is next week. I'm scared.

[ms man]

How long are you willing to stay on Ty with being JCV+?

I've had my 6th infusion(I am JCV+) and Im starting to wonder if this was a good move. Don't get me wrong...I love Ty, have no problems with it and it has made me feel "normal" again. I just always have this worry in the back of my head about getting a brain infection.

I just had #60 and I do think about PML but I'm doing so well on ty that I'm going to coninue ty for now.I discussed possibly going on Tecfidera (the oral med) in 2014 with my spec.