#60 & pml risk now

[REG53]

Hello everyone,

I had #60 today all went well. My MRI last month showed no change. I am remainning stable.

The only thing that changed is DR. said my risk of pml now is 1 in 250. Factors are jcv+ and lenght of time I have been on it.

I will have a MRI every 3 months.

[Michalk]

I'm new to this - You were JCV- and after a while turned + ?

[REG53]

Hello Michalk,

I tested jcv+ two years ago when I started in the jcv study.

Dr. said he got a new report yesterday which showed the risk for me is now 1 in 250.

[MrsBones]

I'm new to this - You were JCV- and after a while turned + ?

The JC virus is pretty common. If a person tests - , they may eventually be exposed to it and become +. That's not the case with REG53, but it's entirely possible. A person should be retested periodically to be sure they are still -.

http://www.ninds.nih.gov/disorders/pml/pml.htm

http://www.ninds.nih.gov/news_and_ev...Gene_Major.htm

http://www.msrc.co.uk/index.cfm/fuse...ow/pageid=1905

[Michalk]

People who are + still take it?

I'm surprised people who are + take the risk. Or do they just have to keep a close watch? Sounds scary.
I live in Israel and am treated in a hospital that has a very large MS center. They are very for Tysabri but will not give it to anyone who is jcv +
when I start tomorrow I guess I'll find out how often they retest for jcv - I'm glad they're cautious and I guess I'm lucky that I'm negative

[lindaincolorado]

REG53

My neuro told me a few weeks ago that the stats for jcv+ are 1/700 for those on it over 4 years ?? Just makes you wonder
I did test jcv- Nov 2011 but he's giving me the odds of + since in 2010 I tested +.

anyhoo ...Congrats on #60

[REG53]

Linda- Yes it does make me wonder. Dr. Said there was no other med better to put me on. I am keeping my eye on RG-12 but I will stay on Ty for now.

[REG53]

Sorry I should have typed BG12.

[LL60]

Michalk -
That is very good that they are careful at your hospital. But, I feel they are keeping a very good and effective drug from a whole lot of people just because they are JCV +. But I guess if they feel they can keep one person from getting PML it would be worth it.

I'm just glad my doctor doesn't feel that way. I don't know what I am, I refuse the test each time. I have been on it for 2 1/2 years. I am sure the time will come when I will HAVE to be tested. I will just do my monthly infusions until that time comes. (I work with ill children and have traveled all over the country and a few places overseas, so I just quietly assume I am + and just pay very close attention to what is going on in my body.)

[Sarah26]

name of JC test?

what is the name of the JC test?
I have my labs but don't find anything relating to that test

[REG53]

Sarah--you can ask you neuro for the jcv test.

[Tinkerbell65]

REG- Congrats! I'm so happy it's working out for you! Please be sure to keep us posted on your progress