Need some advice: JCV Negative

Hello Everyone-

Looking for advice about Ty.

Little background. I was on Avonex and developed an allergy. Went on Copaxone and had a very rare but serious reaction. So I am currently not on a DMD.

My MS Specialist recently ordered the JCV test, and unbelievably, I am JCV Negative.

So, I have a two questions and am looking for advice:

1) Can I be JCV Negative and still get PML?
2) What are the most common side effects you personally get after an infusion.

I am thinking of possibly going on Ty until the new drugs come out and try the new drugs.

Any input, is appreciated.

Katie

[Scooter24]

Yes it is possible to go from neg to pos if you are exposed, not sure what the chances of that happening is and from exactly what you have to be exposed to. But it is said if you are neg and have not had imune system supressents and haven't had TY for more than 24 months your chance of getting PML is less than 1 in 1000, this according to numerous sources.

I personally just had # 23 and the only side effect I have is a very slight headache for about 24 hrs and this is only once in a while. I also feel like my batteries are running low a few days before my infusion once and a while. Otherwise I feel great on it and have more energy than I did while on avonex and copax. it took a few months for the energy side to kick in for me.

[lindaincolorado]

Hi Katie, there was 1 person that got pml who was jcv- and this was after getting plasmapherisis- guessing if tested before the plasma exchange person would've been jcv+.

I have had 63 infusions and really no side effects - a couple times I've had a slight headache for a short period of time

good luck

[0485c10]

i don't have any side affects so i can't address that. i've tread a lot on jcv test and pml.

it does not appear to be possible to get PML without jcv antibodies, jcv+.

as my doc explained it to me...just because you test - for strep throat this year does not mean you will never get pml in the future.

and the test can have a false negative...

here is were i am less certain of my memory...i think they put the risk of either a false negative test or being exposed to the jc virus after the test at 5%?? the fda has place the risk of a false negative at 3%.

the jc virus is asymptomatic, people don't even know when they have been exposed to the virus.

[0485c10]

as my doc explained it to me...just because you test - for strep throat this year does not mean you will never get pml in the future.

corrected: she said just because i have a negative strep throat test this year does not mean i will never get strep throat in the future...

same with PML just because you had a negative jcv test this year does not mean you will never be exposed to jc virus.

[BlessedWyoMom]

This doesn't necessarily answer any of your questions because I have not yet started on Ty, but will be soon. Just wanted to let you know that I, too, have taken both Avonex and Copaxone. I also tested negative for the JV virus. Like others have said, it doesn't mean that I will never be exposed to it.

I have seen my neuro for almost 12 years and have a very good relationship with him. He essentially begged me to try Ty. I still have some fears about starting Ty, but the way things are going, this is my only option. I am glad to be able to read all of the Ty success stories here. I am resting on the hope that the pay off will be worth the risks.

I am glad you asked about usual side effects because I was curious about that, too.

[KatieDidNOT]

First--Thank-you for all who have replied. I really appreciate it.

I seriously have doubts about my JCV Negative status. And I relayed that to the Nurse that called me today. Between 8 years of college and 22 years of military service, I have been exposed to so much, that it seemed absolutely incredulous that I am JCV Negative, in fact...I just don't flat out believe it. I think as 0485c10 pointed out, I have a false negative.

Additionally, given my past history of drug interactions, I have went into actual anaphylactic shock with two medications (not DMDs), passed out with Avonex (in the grocery store ) and then the Copaxone thing, I feel that the 1 out of 1,000 person would be me.

Being military, I am afraid of very few things really, to include death (if it is quick). But if you ask me would you rather spend a year in Afghanistan without a flak vest and helmet or take Ty, I would raise my hand for Afghanistan, because I could handle that...so big salute to all of you!

My heart tells me to go for it, my brain says NO! I think in this matter, I need to listen to my brain. My current EDSS is 2.5...so I think I have a little wiggle room. I am a big believer of DMDs....I want one....I want one bad! My neuro also mentioned as an alternative, putting me on less interferon and something to mitigate the reaction I had...could possibly do that. Ahhh....got lots to think about.

I wish all of you the absolute best on Ty. If I did not have so many problems with other drugs, I would not be as "wishy-washy" as I am being. Of course, I am having an MRI in April, and if things are not going good, I might be back in here asking you all questions.

BlessedWyoMom--Please don't be fearful...I think you will be sharing your success stories shortly. And I can't wait to read them.

Cheers--Katie

[0485c10]

Not so fast. Your heart may be channeling your second sense.

Although like you say at an EDSS level of 2.5 you may have a little more wiggle room-so exploring your option with your doc is a good plan....

but given the false negative rate, you can add the information that no one has gotten PML before 12 months, regardles of jcv status, except for 2 people who had used an immunsuppressant in the past. One was a 65 year old gentleman, not even being treated for MS, he was using tysabri to treat his crohns disease. He got PML 8 months after starting tysabri. And one was a 20 something year old man who had used an immune supressant recently before switching to tysabri. He got PML 6 months after starting Tysabri.

But every other PML has happened 11+ months after starting tysabri. soonest at 12 months.

And as far as infusion reactions to tysabri, you would likely be in a hospital or infusion center when the infusion is done.

Tysabri can only be given at a Touch approved infusion location & one of the requirements of a touch approved infusion center is that an MD be located physically on the premise. A nurse can do the infusion. but a physician has to be physically located on the premise. Why Tysabri Infusions are often done in hospitals with an ER that is also staffed with a physician at all times.

If your gonna have a reaction to a med, where is there a better place to be?

And to share my experience with starting tysabri...I did not know if i would have some kind of infusion reaction that would make me ineligible to use it? So i had to try it so i would know. Wouldn't it be funny if through my life i was kicking myself for not trying tysabri when i could have, but if i had used tysabri i would have had an infusion reaction that would make me unable to use it anyway?

The first year at each infusion I hoped i would have an infusion reaction that would make me not able to use tysabri, then i would be able to tell myself..oh well, i tried

But i didn't so i just have continued for 3 more years.

The arguments of your heart may have serious merits for you to consider more fully.

Glad your out of Afgahnistan, thanks for doing it.

[0485c10]

There was something else i wanted to add--that if you go on tysabri temporarily until one of the new drugs come out you will be following a plan that many of us have, with bg-12 as the drug to be released late this year as the target new drug.

PML takes about a year to develop, the process is rather complicated....

A person has to have the jc-viris dormant somewhere in their body. Those that have the JC virus it is usually lying harmlessly dormant in bones or lymph tissue.

the virus has to be dislodged from where it is lying dormant, go active and mobile in the blood stream.

travel to the brain, of a person who has no immune surveillance of the brain because of tysabri, other immune suppresants or AIDS. it has to mutate into a nueroptrophic virus(partial to neurotrophic tissue)

from there it can cause PML...

but all those steps take time to develop--it can't just happen overnight. with tysabri experience it is taking at least 12 months to accomplish all the steps.

[KatieDidNOT]

The first year at each infusion I hoped i would have an infusion reaction that would make me not able to use tysabri, then i would be able to tell myself..oh well, i tried

LOL...this statement was hilarious...I saw myself in it.

You really brought up some good points 0485c10, a lot actually and I am going to chew on what you said. Ty would indeed be a "temporary" bridge for me, and maybe, I do need to bring my heart back into the equation. Like I said earlier, I really want to be on a DMD...I really do.

I have time to think about it, my MRI and Drs. appointments are not until April.

BTW...THANK-YOU, for all the research you have personally done for this forum. I actually have read a lot of it, even if I was not taking the particular drug. I have found your statistical posts to be enlightening and informative. Something we would never get from a docs office and most of us could not do the stats ourselves. You have offered a great service to MSWorld.

Cheers--Katie

[Tinkerbell65]

Hi Katie- Just wanted to tell you that I just had my first infusion last week, I went on Tysabri despite the fact that I tested JC+. I am not normally a risk taker, but as 045c10 mentioned, my plan is to do this only until bg12 comes out and since that'll be right around the first year mark my risk is still very low.

Thank you so much for your service!
Theresa

[KatieDidNOT]

Thanks Tinkerbell

That will be my plan too. To take Ty until BG-12 comes out. Glad your first infusion went well.

Cheers--Katie

[1dayitwillNd]

I was taking rebif last summer after dx last year in the spring. It seemed to be working well...I was feeling pretty good. Unfortunately my liver enzyme levels shot up way high so I discontinued use. Felt pretty good until November...had new legions (per my mri in January of this year).

I've considered going on Copaxone, but based on the unpleasant heart/skin reactions...I'm going to put that as my #2, behind Tysabri. Based on all the good I've been reading about it, testing negative for the jc virus, I've decided to go with it. I've qualified for copay/infusion assistance, so now I'm a week away from my first infusion.

I am aware of PML, but at this stage...until I test positive for the jc virus, I'm not concerned about it. As far as I know, a blood test for the jc virus can be conducted every 3-6 months. If I ever were to test positive for it, I think at that time I would seriously consider stopping usage. Perhaps then there will be other alternatives out there....such as the one you guys have referenced, 'bg-12'.
What does everyone know about this drug/treatment?