Is your JC virus test a choice?

[palmtree]

I'm under the impression that many of you have doctors that order the JC virus test and that you have no choice. And , if the test comes back positive, you have to change treatments.

My doctor has given me the option of taking the test or not. And, if it is positive, the option of still staying on Tysabri.

For me, allowing my MS to progress is not an option. I'm asking this because I'm thinking of moving and am scared to get stuck with a doctor who requires a JC virus test and then would refuse to allow me to stay on it.

[Tomjadg]

I think they automatically run the test, but I was given options because I am a high positive.
I chose to stay on Ty, but I decided to go to 8 weeks between infusions. I also get a brain MRI before each infusion that he checks first for any PML signs.

I think it depends on the Doctor as far as staying on Ty or not. I live with this 24/7, and know me best. My Neuro goes with what I want.

[Special Kay]

I think the testing is a requirement of Biogen's prescribing program and it also why they pay for the testing. It's possible that the testing is a requirement of their FDA approval (or re-approval I guess) for Tysabri. But also, it allows them to keep track of and continually assess (and report for the government, shareholders, etc.) PML risk. It's also why your neuro would be required to report to them if you developed PML (god forbid).

I suppose you could always decline to know the results.

[KatieAgain]

I'm currently negative, but my MS doctor insists on a JCV Test twice a year through Quest and the Oncologist who administers the TY has been doing it quarterly via a different method than Touch Protocol.

My MS Doc will keep me on TY as long as I want as long as I don't develop antibodies to it. The key here is to be informed of the risks so that I can make an educated decision based on my risk tolerance.

[Marco]

Stratify JCV Antibody ELISA test

Ultimately, your neurologist should work with you to correctly understand your PML risk factors, including the Stratify JCV Antibody ELISA test results. Being JCV+ does not preclude you from taking Tysabri. I am not aware of any neurologists that will pull you off Tysabri for simply being JCV+. Many Tysabri patients are JCV+ and remain on the medication. I know of many neurologists that will begin to warn or pester patients with a higher risk of PML to consider changing therapies. Your risk is higher if you are JCV+, have been on Tysabri for more than 2+ years or have prior immunosuppressant use. For patients that are JCV+ their titer test will normally increase over time, increasing the risk of PML. I do not understand why you do not want to know your true risk factors.

I do not know why any neurologist would agree to the "ostrich approach" and simply ignore PML risk indicators. Every 6 months, your doctor must certify that you meet the criteria to remain on Tysabri. Part of this certification is an understanding of your PML risk, that should generally include the Stratify JCV Antibody ELISA test. This requirement is part of the TOUCH program administered by the manufacturer of Tysabri. I am also not sure you have a legal option to refuse the test and remain on therapy. As a TOUCH program patient you may have requirements that you have signed that may oblige you to periodic monitoring.

There may come a time when a neurologist refuses to prescribe Tysabri to you for safety reasons. That's not something that should be ignored lightly, but should serve as a wake-up call. I wish you well and really hope this is just a big misunderstanding.

[palmtree]

So it sounds like most of you still have the choice to stay on TY if JC is positive.

[Special Kay]

There are many folks (including on this board) who take Tysabri and are JCV+.

My neuro has such patients, she just monitors them much more closely. For instance, she gives them more regular MRIs (I can't remember, possibly every 3-4 months?), because she believes that radiologic evidence of PML precedes clinical symptoms.

[Myoak]

Some neuros bully their patients into treatment choices because they believe they can make the best choices for their patients. Sometimes they can, but not always. Predicting the future has limitations, even for the doctor-gods.

Personality, personal prejudices, and perhaps an occasional vested interest may all play roles in a doctor's insistence.

Scientific studies have proven doctors are more risk averse than patients. So anyone like palmtree who is concerned their doctor is going to play hardball and withhold Tysabri will have to convince their doctor otherwise.

You may want to discuss but your doctor may want to argue so be prepared for that attitude, palmtree. What you will have to do is express knowledge about what your risk is and that the level of risk is acceptable to you.

Tysabri has risk; but less effect meds have a load of risk for MS to worsen versus Tysabri Each person balances that equation individually.

Those JCV positive should learn what their PML risk is. That can be done through various threads here at MSWorld.

Anyone who wants to stay on Tysabri when their doctor refuses will have to find another doctor or be convincing they know and accept the risk of staying on it. JMHO.

[palmtree]

Marco, I have to respond to your rather scathing post. You have made some blanket statements that are simply not true. There is no legal requirement to get the JC virus test. If there was I would have gotten it already.

My neurologist gives me the choice based on reason. I need to stay on Tysabri because the risk of extreme MS progression is 100% if I stop it based on the progression I experienced before starting it. If a patient is JC positive that only increases the risk infinitesimally. So, why worry? Worrying only causes stress.

Another thing. I see people on this site quoting statistics like, "21% pml death rate". That may be true for the group who gets PML. But, I sense that many are scared away from a very effective treatment because they think they have a 21% chance of dying if they take Tysabri.

[Tomjadg]

Palmtree,

I don't see a "scathing" post by Marco, only truthful information.
Marco is one of the most informed posters here, and is usually right on, on his information.

You said: "I'm under the impression that many of you have doctors that order the JC virus test and that you have no choice. And , if the test comes back positive, you have to change treatments".

Not true.

You also said:"I sense that many are scared away from a very effective treatment because they think they have a 21% chance of dying if they take Tysabri".

Your post contributes to scaring uninformed people.

I also question why you would not want the JC virus test, to help make an informed decision of what plan to follow with meds. Although not sure, I think it is an automatic test when on Ty.

[Myoak]

Conflict is always the price of deepening intimacy and can only be resolved through proper communication. I don’t recall who said that but it is so true.

It is difficult for brief sentences to convey exactly what we want to say, or mean to say. Then, on the other side, comprehension of those brief sentences may occasionally miss the mark ever so slightly, also.

Neither Marco nor Palmtree intends to offend or frighten anyone, I’m sure. It is only a matter of expression and understanding.

As of early March 2014 a total of 454 had gotten PML and 109 had died out of about 123,000 taking Tysabri. So the deaths were less than 1/10 of 1% on Tysabri. Of the 454 who got PML, 109 or 24% died.

PML is awful. MS is awful. I understand that some MSers on Tysabri prefer to remain on it even though about 1 in 1128 has died because of PML. So 1127 out of 1128 didn’t die because of PML.

And, 34% of those, or 383 out of 1127 show no evidence of disease activity. Also, disease progression as represented by MRI is greatly reduced, by about 90% in all 1127, collectively.

Some MSers on Tysabri prefer not to know their risk as represented by a JCV titer number because they feel if they don’t know, they won’t worry about it. Worry can cause stress which might impact their health negatively. I understand that position and it is perfectly ok with me. Not my style but I am not in their shoes, either. Who am I to judge?

Grace is a lovely thing. Marco and Palmtree are both lovely people, I have no doubt they are gracious and will always manifest that trait.

Conflict is always the price of deepening intimacy and can only be resolved through proper communication. The good that comes through dialogue is clarification and a closer relationship.

[lindaincolorado]

Myoak

I had not logged in, just reading Then I caught up on this thread and read your post. You are amazing to me !
Thank you for sharing your knowledge and how you express it is so helpful and wonderful.
I so appreciate you
Linda

[Myoak]

Linda,

Your kind words mean so much to me.

Thank You

[golfore]

About 3 oaths ago, my MDiety told me, that a decision had been made that they would no longer prescribe TY to any of their patients.

Choose a new therapy.

[palmtree]

Myoak, it's very comforting to read your words of wisdom and perspective. This post is interesting. I had no idea it was going to stir up so many emotional reactions. I don't like conflict but I do feel strongly about defending my personal choices.