Was anyone tested for JCV before starting Tysabri

[dee-dee]

choice

I fought against doing this for yrs. Then they said I didn't have a choice, so I had them test me first. I waited for the answer before starting. I was positive but I'm doing it, I need any help.It was my choice and it was an informed one. Good luck with yours.

[1523371682@facebook]

I fought against doing this for yrs. Then they said I didn't have a choice, so I had them test me first. I waited for the answer before starting. I was positive but I'm doing it, I need any help.It was my choice and it was an informed one. Good luck with yours.

I'm still fighting with it. Looks like it might eventually be the only choice. My neuro talked with a MS specialist about me (more of a specialist than he is, I guess). He suggest doing a MRA before going any further.

[Wellnesschic]

Scooter24- Agree, strange, for some reason my body has a a rather strong delayed hypersensitivity reaction to Ty. Right now it is being controlled by prednisone and lots of benedryl. Once I get past say the first 7-10 days, I am usually good for the rest of the month. I do feel like I need a tune up a few days before the next infusion, I am usually really really tired. Ty is strong stuff (and great stuff too). I guess our bodies are just so different when it comes to how we respond to meds.

Wellnesschic- very strange you having a bad week after the infusion, I have just the opposite, feel great for 3 weeks and then batteries start going dead the 4wk and I can't wait for my next infusion. The infusion nurse says that is the biggest complaint she gets about TY.

[1523371682@facebook]

I just wanted to thank everyone for their comments. Did a MRA everything was normal. so I guess all that is going on is contributed to MS. I have decided not to take tysabri. personal reasons. My doctor is starting me on Pulse Steroids, at least until a new med that i can take comes out. Again, thanks everyone.

[Cate Power]

JC+ . . .

and my Rx history stinks, but "the beast is on the prowl" and I am going for it as soon as I am Rebif clean. Neuro told me that would take 2 mos., but Rx company and pharmacy said 2+1/2 weeks. Does he assume I will take his word for it?? Maybe I just look stupid . . . Sorry, I am tired. Anywho, my consultant at UMD's MS Center is brilliant, I know the risks, the important papers are in order, and 2 years of relatively low risk sounds much better than I've seen in a long time.

I read that the "study" was a money-making ploy by Biogen, as it reportedly wants to have the patent on the blood assay that may lead many to say yes or no to the Rx Biogen sells with its European partner. I'm all for making a profit, but this seems a bit much. Wonder if the Commissioner of Social Security, a former Biogen executive, kept his stock.

[NickyOz]

I have not gone on Ty yet but was tested before I decide whether to start it or not. I am negative. Why am I one of the few people tested before starting Ty

[1523371682@facebook]

I have not gone on Ty yet but was tested before I decide whether to start it or not. I am negative. Why am I one of the few people tested before starting Ty

Not sure why, but as far as I know they just started doing it not long ago. I would not consider until I was tested. Unfortunately I tested positive, and decided not to go on it. Glad you are negative.

[0485c10]

I have not gone on Ty yet but was tested before I decide whether to start it or not. I am negative. Why am I one of the few people tested before starting Ty

The JCV test availability is different in each country. you would need to know why it was available to your doc in australia. In the US someone who has been tested already has participated in a strata trial or their doc has agreed to participate. In Europe the test was approved but not yet approved for marketing so it was available on a limited basis. why it was available to you in australia, we don't know. I think it was a good thing but ask your doc if your curious.

[NickyOz]

I live in Ireland and they said it came to be available a few months ago

[Punni]

Tysabri and JCV

I will have my 20th Tysabri infusion this month. I was tested 2 times for jcv, both time the results were neg. No, I was not tested prior to my first infusion, my blood was taken for the jcv the day I received my first Ty infusion. I have not had any problems with Ty, only one relapse within the last month which is including severe spasicity! yuck

[andrewlutes]

Hi, my name's Andrew. I was diagnosed at 18, and believe I've had a good run with few serious exacerbations. I started with Rebif, hated the flu like symptoms if you don't take Tylenol. I was on it for 4 years, and had a relapse that left me in the hospital. My neuro switched me to Copaxone, which I tolerated well and things were calm. This March my doc discussed switching to Tysabri, based on recent MRIs and problems with balance and gait. I did blood work to enter the STRATIFY-2 study, and later found I was JC+.

But this April, big relapse, hundreds of active lesions. IV prednisone, of course, but then I was determined to recover. I did, did some rehab, and came home. For the 3 weeks that things seemed normal, I was not taking anything as I was trying to flush the Copaxone before I started the Tysabri... and I had a second relapse. IV steroids + plasma pheresis, and it was back to manageable. Went to rehab, things were okay, but after a few weeks I had no energy to even do rehab, but the docs didn't recognize there was something wrong. The neuro, however, did within 5 seconds.

So, hospital for a week, then didn't go back to rehab, just said I'd take care of it myself. Now, I'm feeling better. Tysabri seems to have benefited me, and I'm about to have my 3rd treatment. I am among the many of you that thinks the risk is outweighed by the benefit. I'm all for taking a risky drug that will keep me out of the hospital.

**Post broken into paragraphs by Moderator for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print.**

[NickyOz]

I am Australian and live in Ireland. I have had MS 10 years anddue to bad relapse amstarting Ty next month. I amnot part of the Stratify test. Here they test you for JCV before starting Ty. I am negarive. I never understood why other countries don't test but Ireland do

[1523371682@facebook]

Thanks for all the replys, as of now I am still not on any therapies. I am only doing monthly IV steroids hoping something new is going to come out to try. Still have vision problems, cognitive problems, speech problems and leg weakness. no more than when i was on all the therapies. they come and go until i fully flare. getting my 3rd infusion this month. Can't still put my faith in the tysabri. just the thought of being JCV positive still bothers me.

[Astoria]

I actually work in a medical office that does the JCV test. I just want to put a few words out there in writing, because it seems to me that when I tell my patients this, it's very easy for them to forget/get confused.

We've been seeing about 56% of people testing be positive for JCV, so a little bit higher than the projected 50/50. Some people don't realize this and when they hear that they are positive, they think that they've got some rare condition and are completely doomed. That's not the case at all. And if you are JCV positive, it doesn't mean that you can't be on Tysabri.

As of June I believe, of the 83,000 people who have been on Tysabri, there have been 128 reported cases of PML. All 128 were JCV positive. Still, in research they are not ever able to say that you are JCV negative you'll never get PML - they just haven't really come across a case yet (there is one recent case of a JCV negative PML case, but some question the JCV result since the pt just had plasmapheresis. )

If you are JCV positive and on Tysabri, the chances (based on the data available) of developing PML are:

0-2 years: 0.49%,
2-3 years: 1.9%
4 years: 1.1%

If you have a history of being on steroids and other immuno-suppressants, these chances increase. I think for those who have a heavy history, the rate is quadrupled.

The benefit of knowing whether or not you are JCV positive is that you and your clinic/physician can keep watch on possible indications for PML, should you choose to be on Tysabri.

It seems some don't trust a "study test" and want to wait for the commercial. There is no difference between the study test and the commercial, except that the study test is monitoring the amount of JCV antibodies in the blood (since it hasn't been studied before) and if you get the test done through the study it's completely free, nothing gets billed to you or your insurance.

If you are able to get the test done through a study somewhere, they will probably ask you to come in once a year for a repeat draw for the next two years. This is done because if you are negative, you may pick up the virus. If you are positive, the researchers would like to evaluate whether or not the amount of antibodies goes up or down over time (because again, they just don't know. That sort of thing has never been studied before.)

Going on Tysabri is up to you and your doctor. For some people, it's their best option, regardless of the results. For others, there might be some other contenders to look at. For some people, they won't even take any risk if they don't have to. For others, the benefits outweigh the risks. It's really a per-patient basis whether or not you should be on Tysabri.

If you are a person who doesn't care about the results either way, that you will be on Tysabri no matter what, it still might behoove you to get the test, if only because having those results in your chart will absolutely make the people treating you be much more aware of PML, even if you're negative. Having a result in your chart says to the medical staff, "oh, this is something that the patient was concerned about, so we should just keep our eye on it, just in case." Plus, and I've got to throw this in, you ARE helping the world learn more about this. This test is new and not always done because there is so much little known about it.

I hope that information helps clear up some things about the whole JCV business.