Results of blood work for JCV 'index" risk

[alanpgh]

Myoak,

Thanks for trying again. It would be helpful know know if anyone else has a problem playing this video:
https://conferencecenter.msworld.org...s-with-tysabri

You don't have to be logged in for the video to play.
But, you might need an Internet connection that is faster than DSL.

I "unstickied" this thread and stickied a new thread with only the video highlighted.
Here is the stickied thread: (This should get people's attention.)
New Test Available: Mitigating Risks with Tysabri Video from CMSC Annual Meeting

Thanks for keeping this very helpful thread going!

Alan

[Myoak]

None of the videos from the recent CMSC meeting play for me, including this one. Anyone else had success playing this or any other video from Days 1, 2, or 3?

There are several videos from the CMSC meeting I would love to see and I have no idea why they don't come up when I click on them.

Really strange there appears to be no interest whatsoever among people with MS or caregivers in up-to-date presentations by leading MS researchers. I am surprised that potential life-saving information or at minimum information which helps determine choice of treatment is totally ignored.

Oh well, reminds me of when someone asked whether the “testosterone hormone promotes remyelin” and MSer 102 answered, “I think if it did we would all know about it and already be using it. And since we don't and aren't then maybe it doesn't.” Incredible. Why bother learning from peer-reviewed scientific studies or listening to presentations from renowned researchers at CMSC? Anything of value we would all know about and if we don’t know it about it how could it have value?

Heaven help us, we can do better. Just for a hoot could someone, anyone, just one person click the link Alan provided above and report if it worked for you? Maybe we could learn something helpful if the darn link would work.

[AMJ]

Myoak, I am able to open and view the links. I will watch them when there is not as much distraction going on around me. I am very interested in keeping up to date in all the research that is going on.

I do want to say that I appreciate all your informative posts. You are a great asset to this board.

Thank you.

[bree2013]

.... Just for a hoot could someone, anyone, just one person click the link Alan provided above and report if it worked for you? Maybe we could learn something helpful if the darn link would work.

Myoak: Just wanted you to know I was able to view the video.

I've been having problems viewing all videos (not just on MS World) and had to download current Java -- but it did work.

There is so much information available here at MSW, and I am still amazed how much I am learning.

Biogen coming up with this current JCV index testing for Tysabri users is ground breaking. If I were using Tysabri, having this test done would help me feel better about continuing or not.

Hope you're able to view the link.

Bree

[Myoak]

Thank you Bree and AMJ!

Bree you solved the problem. I had removed Java from my PC in order to avoid the Java Update Virus and was unable to view the video link Alan provided. I used my MacBook which still has Java installed and the video played just fine.

Thank you so much to each of you for your help and your kind words.

[LL60]

My index is 4.1.
As information is out at this time, my risk of PML is one in 118.
Not that bad. Not for what I get in return.

[regi girl]

JUST HAD INDEX TEST

I HAD MY TEST LAST FRIDAY, THEY SAID I SHOULD GET RESULTS BACK BY TOMORROW OR FRIDAY.

I HOPE MY NUMBER IS LOW. I'VE ONLY BEEN ON TY 13 MONTHS SO I'M STILL IN THE "SAFE" MODE. BUT I HOPE TO STAY ON IT UNTIL THERE IS A CURE OR SOMETHING EVEN BETTER.

I GOT PRETTY SICK WITH DIZZINESS, FATIGUE, OFF BALANCE AND NAUSEA YESTERDAY WASN'T ABLE TO GO HOME EARLY FROM WORK BUT I PASSED OUT AS SOON AS I GOT HOME. NOT FEELING GOOD TODAY BUT I WAS ABLE TO MAKE IT TO WORK EVEN THOUGH I WILL PROBABLY HAVE TO LEAVE EARLY AND GO TO BED.

HAVEN'T HAD THIS IN A LONG TIME, BUT WITH TY AT LEAST I AM FUNCTIONING ON A LOW/MEDIUM LEVEL, (BETTER THAN NOT FUNCTIONING) WITH ANOTHER GOOD NIGHT SLEEP I FEEL I'LL BE GOOD TO GO TOMORROW. BEFORE TY THIS LITTLE FLARE PROBABLY WOULD HAVE PUT ME IN BED FOR A DAY, TWO, POSSIBLY EVEN 3.

BUT IT IS 90+ DEGREES, HEAT INDEX OVER A 100 AND I'VE BEEN VERY ACTIVE AND BUSY. I HAVE BEEN ABLE TO DO THINGS THIS SUMMER THAT I HAVEN'T BEEN ABLE TO DO IN MANY YEARS.

A YEAR AGO I WAS MISSING AN AVERAGE OF 2-3 DAYS A MONTH, NOT FULL BLOWN EXACERBATIONS JUST THE MS SICK FATIGUE AND TRYING TO WORK A FULL TIME JOB STUFF. THIS YEAR, I'VE ONLY TAKEN OFF FOR MY INFUSION AND DR'S APPOINTMENTS.

I SAID I WOULD NEVER TAKE TY WHEN I FIRST HEARD ABOUT IT, WOULD NOT EVEN CONSIDER IT. BUT I COULDN'T DO THE INTERFERONS, WAS ABOUT TO START GLY BUT WHEN I READ THE SIDE EFFECTS EVERYONE ONE HAVING, I BACKED OUT AND TRIED WHAT I SAID I WOULD NEVER EVEN CONSIDER TAKING AND IT'S GIVEN ME SUCH A BETTER QUALITY OF LIFE. NOT SYMPTOM FREE BUT A BIG IMPROVEMENT. SO NEVER SAY NEVER.

I PRAY THESE BLOOD TESTS AND NEW RESEARCH ABOUT PML CAN KEEP US ON OUR TY.

[LK]

New JCV+

Hello... just found out today that I am JCV+... my number was .27, which my dr said is in 'gray zone' of positve. I have had 5 wonderful years on Tysabri with no side effects or problems or progression of disease. My dr is supportive and fine with me staying on Tysabri with rechecks of bloodwork every 3 months. I think I'm ok with this as well... at least I am as I type this... just wanted to talk with those that understand... thanks for listening.

[regi girl]

NOT GOOD NEWS

THE DR'S OFFICE CALLED TODAY WITH MY BLOOD TESTS RESULTS, I'M SOO UPSET MY INDEX NUMBER IS HIGH. THEY RECOMMEND THAT I COME OFF TYSABRI.

I'VE BEEN DOING SO GOOD, I'VE JUST BEEN SO UPSET TODAY, I'VE CRIED QUITE A BIT AND SLEPT.

MY QUALITY OF LIFE HAS IMPROVED SOOO MUCH WITH TY, MY HEART JUST ACHES WHEN I THINK OF GOING BACK TO THE WAY I WAS. I HAD SUCH HIGH HOPES OF IMPROVING AND MAYBE ONE DAY RUNNING AGAIN.

I FEEL LIKE ALL HOPE IS JUST SLIPPING THROUGH MY FINGERS.

I JUST DON'T SEE HOPE IN GLY AND WITH THE GASTRO PROBLEM WITH TECFRIDERA MY NUERO IS NOT EVEN BRINGING UP THAT DRUG ANYMORE AS AN OPTION FOR ME. I HAVE ENOUGH PROBLEMS WITH GASTRO PARISIS.

HE'S WANTING ME TO START ON LAMETRA? , NOT SURE IF I SPELT THAT RIGHT. I HAVEN'T BEEN DIAGNOSED VERY LONG BUT I'M CATCHING ON TO THE SYSTEM NOW, EVERY DRUG BEFORE IT'S APPROVED IS SUCH A WONDER DRUG, EVERYTHING IS GREAT. BUT WHEN IT HITS THE PUBLIC AND THERE'S NO LONGER A CONTROLLED STUDY GROUP THEY TEND NOT TO HOLD UP TO THE HYPE.

I'M SO DISCOURAGED, THANKS FOR LISTENING, MY WONDERFUL MS FAMILY. YOU ALL HAVE BEEN SUCH A HELP TO ME, THERE IS NOT A SUPPORT GROUP IN MY AREA AND I DON'T ANYONE PERSONALLY WITH MS. YOU ALL ARE MY LIFE LINE, THANKS.

[bree2013]

...HE'S WANTING ME TO START ON LAMETRA? , NOT SURE IF I SPELT THAT RIGHT. I HAVEN'T BEEN DIAGNOSED VERY LONG BUT I'M CATCHING ON TO THE SYSTEM NOW, EVERY DRUG BEFORE IT'S APPROVED IS SUCH A WONDER DRUG, EVERYTHING IS GREAT. BUT WHEN IT HITS THE PUBLIC AND THERE'S NO LONGER A CONTROLLED STUDY GROUP THEY TEND NOT TO HOLD UP TO THE HYPE.

I'M SO DISCOURAGED, THANKS FOR LISTENING, MY WONDERFUL MS FAMILY. YOU ALL HAVE BEEN SUCH A HELP TO ME, THERE IS NOT A SUPPORT GROUP IN MY AREA AND I DON'T ANYONE PERSONALLY WITH MS. YOU ALL ARE MY LIFE LINE, THANKS.

Hi Regi girl,

Sorry to hear you're JCV+ with high index. Did you read the thread started by MARCO in June 2012, New Treatments & Trials, Lemtrada (Campath)

"The Committee for Medicinal Products for Human Use of the European Medicines Agency, issued a positive opinion for Lemtrada approval.

The US FDA is still expected to approve Lemtrada before the end of the year."

One poster, Spacediver (?) spoke of his/her 3 year experience with Lemtrada (Campath).

Hopefully this gets approval soon.

Good luck,
Bree

[bree2013]

As clarification, MARCO started the thread in June 2012, but his latest post was June 2013:

"The Committee for Medicinal Products for Human Use of the European Medicines Agency, issued a positive opinion for Lemtrada approval.

The US FDA is still expected to approve Lemtrada before the end of the year."

[timeuponaonce]

Hello regi girl,

if you don't mind me asking, did your Neuro see the high number and simply take you off Tysabri?
Or, did he suggest additional tests, such as a Lumbar Puncture?

The reason I ask...
This is my experience. Everyone is different.
I had the JCV index test and had a fairly high number.
My Neuro, who personally treats 1200+ MS patients, did a Lumbar Puncture on me. The results came back normal. I am still on Tysabri, but they will monitor carefully and test in the future.

Again, the above is simply my experience, and of course everyone is in a different situation.

I hope this is helpful to some in a similar situation. You can always ask your personal health care team.

Best Wishes!

Time

[Myoak]

Hi LK,

Thank you for posting! Your JCV index is .27 which is in the gray area between minus and plus. Below.20 the JCV index is listed as negative and above .40 the index is listed as positive. It should not be thought unusual to vacillate between plus and minus when someone is in the gray zone.

When people go from – to +, or when they go from + to –, it can be because of little bounces around the grey area. A JCV index test is a snap-shot in time. A test one week later may have slight differences because viral count may change up or down.

Certainly .27 is very, very, very low. Interestingly, people who test negative may indeed have JC virus but below .20 they are listed as JCV negative.

From charts gleaned from the link at the top of the Tysabri page here at MS World we find:

JCV index less than 0.9 = PML risk of 1 in 2,500 months 49 to 72.
At .27 the risk would be low. And, if you fall back under .20 the risk would be even lower.

Thanks again for posting LK; it is how we are all learning. Best to Ya.

[Myoak]

Hi Regi girl,

You said your index number was high and also have said that you have been on Tysabri for 13 months. Here are some stats which apply in that situation:

JCV index OVER 1.5 = PML risk of 1 in 1,000 during months 1 to 24.
JCV index OVER 1.5 = PML risk of 1 in 123 months 25 to 48.
JCV index OVER 1.5 = PML risk of 1 in 118 months 49 to 72.

You have a PML risk of 1 in 1,000 during the first two years. Period.

Every individual has to decide what level of risk they can live with. It is a personal decision your doctor will respect. If you want to continue on Tysabri you will be able to. But you may have to convince your doctor that you know what the risk is, and that the level of risk is acceptable to you. It would be very odd if they refused to treat you but if they don’t want to treat you go somewhere that will.

999 MSers out of 1,000 do not get PML with a high JCV index during the first two years on Tysabri. If that level of risk is acceptable with you inform your doctor. Someone mentioned Lemtrada. It will likely be FDA approved this fall or early next year.

Possibly, you might desire to stay healthy on Tysabri until Lemtrada is approved, if that treatment is appealing. In 11 months there may be more options available to consider.

Of course, there are people with a high JCV index who have chosen to continue on Tysabri. They view the loss of good health by discontinuing Tysabri a risk they don’t want to take even though they fall into the 1 in 118 category.

Regi girl, you are the only one who can present a convincing case to your doctor. But convince yourself first. It might be a good idea to be able to relate to your doctor that you know have wicked PML is… what it does, how it is treated, and probable outcomes. Balance that with first-hand experience of how wicked MS was pre-Tysabri in your life.

If you want to stay on Tysabri make sure you can present a case for doing so. Study like a lawyer and make the case to continue with your doctor. Be articulate, sober, reasonable and leave emotion outside the room.

Bless your heart. Your situation is so tough. But you are tough, too. You speak of running. You know the determination and tenacity competitive running takes. You are up to the task. We all hate this disease.

Whatever decision you make or don’t make, we love you, we support you, and care deeply for your well-being.

Thank you for sharing your experiences. You aren't the only one in this situation but you are one of the few we learn from as you are generous in sharing about it. We could not esteem you more highly.

[bree2013]

Hi Regi girl,

You said your index number was high and also have said that you have been on Tysabri for 13 months. Here are some stats which apply in that situation:

JCV index OVER 1.5 = PML risk of 1 in 1,000 during months 1 to 24.
JCV index OVER 1.5 = PML risk of 1 in 123 months 25 to 48.
JCV index OVER 1.5 = PML risk of 1 in 118 months 49 to 72.

You have a PML risk of 1 in 1,000 during the first two years. Period.

Every individual has to decide what level of risk they can live with. It is a personal decision your doctor will respect. If you want to continue on Tysabri you will be able to. But you may have to convince your doctor that you know what the risk is, and that the level of risk is acceptable to you. It would be very odd if they refused to treat you but if they don’t want to treat you go somewhere that will.

999 MSers out of 1,000 do not get PML with a high JCV index during the first two years on Tysabri. If that level of risk is acceptable with you inform your doctor. Someone mentioned Lemtrada. It will likely be FDA approved this fall or early next year.

Possibly, you might desire to stay healthy on Tysabri until Lemtrada is approved, if that treatment is appealing. In 11 months there may be more options available to consider.

Of course, there are people with a high JCV index who have chosen to continue on Tysabri. They view the loss of good health by discontinuing Tysabri a risk they don’t want to take even though they fall into the 1 in 118 category.

Regi girl, you are the only one who can present a convincing case to your doctor. But convince yourself first. It might be a good idea to be able to relate to your doctor that you know have wicked PML is… what it does, how it is treated, and probable outcomes. Balance that with first-hand experience of how wicked MS was pre-Tysabri in your life.

If you want to stay on Tysabri make sure you can present a case for doing so. Study like a lawyer and make the case to continue with your doctor. Be articulate, sober, reasonable and leave emotion outside the room.

Regi Girl - As usual, Myoak makes some very good points. He is very thorough in his research and has been a wealth of information to the board.

I only mention Lemtrada because I believe you mentioned your doctor suggested that. But, this is your health, and if you have questions or concerns, ASK.

Since Tysabri has been working well for you, perhaps you can continue -- even for a bit longer.

Can you post our index number. This way you can compare it to the JVC index info posted and maybe others can weight in....

Good luck,
Bree