JCV

[Myoak]

Does anyone know if there are any studies that indicate that dose extension is also valuable for those people who are JCV negative?

I don't really understand how "negative" doesn't really mean "zero". I am in the negative range, but it's really just a low level. There isn't much difference between the fine line between negative and positive.

I asked my neuro about dose extension but he said he will only broach that conversation if my JC titre levels are positive.

Regarding your first question there are no published studies currently available. Perhaps there will be at some point. That said, common sense would dictate dose extension may delay conversion from JCV- to JCV+ for the same reason dose extension lowers PML risk by 90%... that is, the less concentration of Tysabri, the more immune surveillance against JCV. But good luck convincing someone, especially a doctor, who doesn't want to be convinced.

But also, perhaps your MS is quite aggressive and your doctor believes 28 day dosing has the best chance of controlling MS, so factor that consideration in, also.

I believe most neuros are sticking with 28 day infusions for JCV- patients, but certainly not all. It is easy to understand those doing well on Tysabri and are JCV- wanting to remain JCV-. We have no data available on whether dose extension reduces JCV conversion rate but it seems highly probable based on why it reduces PML risk.

Depending on how strongly you feel about it, you may have to find a neuro who will work with you. If your present one will not even discuss it, that is not a good sign for doing what you want with your life, if does extension is what YOU want to do.

You asked why negative does not mean zero on the JCV test. It is because the test does not measure JCV; it measures JCV antibodies. The less JCV antibodies, the less activity against JCV which means the less likely JCV is present, or has been. The answer is much more complex but this much may help understand.

You are correct in thinking it is not a perfect test. But it is the best that can be done right now. A few years ago, there was no JCV test so what we have is a huge step in the right direction and has value even if it is not perfect.

Of course, if you factor in medicine cost, less infusion cost, fewer doctor visits, all those factors favor dose extension, also.

If you are JCV- there is no PML risk unless you convert. So, being JCV- and going on dose extension can't lower PML risk. That is as far as your doctor is willing to discuss, unfortunately.

Your desire for dose extension may save your health and your if your doctor would discuss it. It is unknown whether dose extension would delay or prevent conversion from JCV- to JCV+. But if dose extension does not see an increase in MS activity, and studies prove it doesn't, why not save money and time, at minimum? Tysabri costs about $6,000 per dose every time you infuse.

And, at best, on the possibility you would not convert to positive on dose extension, it could potentially save your life. Where is the downside? Great question for your neuro. But as I said, good luck.

You definitely can be JCV- and go on dose extension if you want to but you will need a neuro willing to do it. Seek and ye will find, depending on how strongly you feel about it.

Best wishes!

[ru4cats]

Morning Myoak,

Thanks again for all your great wisdom. I have "cut and pasted" your response to a file I keep on my desktop.

I hope you don't mind, but I have shared your wisdom and knowledge with others who have asked similar questions on different forums.

Kris

[pennstater]

I am 8rh year on Tysabri, JCV negative, and still infuse every 28 days. But there are others that are negative that have extended to 5 or 6 weeks.

I really feel it when I am due for my infusion. I start to get more fatigued, and with it, increase in cognitive struggles, dizziness, tingling, etc.... I have had to sometimes wait 5 weeks, and it is hard. So while it is not a symptomatic treatment, I am one of the people who get an added benefit.

So for that reason, I am sticking to 4 weeks. Dreading the day I have to change.

[Myoak]

Morning Myoak,

Thanks again for all your great wisdom. I have "cut and pasted" your response to a file I keep on my desktop.

I hope you don't mind, but I have shared your wisdom and knowledge with others who have asked similar questions on different forums.

Kris

Hello Kris,

Thank you for your very kind expressions! Of course, you are most welcome to use anything I post which may help others. Hopefully, you will correct the typos I always seem to make but you may post whatever wherever you wish.

I don't have time for FB and the rest of social media, anyway, so what you are doing is a good thing. Knowledge which has the potential to improve or protect someone's life should definitely be shared, so thank you my good friend, for your efforts!

[ru4cats]

I am 8rh year on Tysabri, JCV negative, and still infuse every 28 days. But there are others that are negative that have extended to 5 or 6 weeks.

I really feel it when I am due for my infusion. I start to get more fatigued, and with it, increase in cognitive struggles, dizziness, tingling, etc.... I have had to sometimes wait 5 weeks, and it is hard. So while it is not a symptomatic treatment, I am one of the people who get an added benefit.

So for that reason, I am sticking to 4 weeks. Dreading the day I have to change.

Why should you have to change? EID is just an option, and since you are JC-, why would you have to change from SID? It you are doing well at every 28 days, I say stay right where you are.

[pennstater]

Why should you have to change? EID is just an option, and since you are JC-, why would you have to change from SID? It you are doing well at every 28 days, I say stay right where you are.

Thanks ru4cats. I am staying put at 28 weeks as long as I stay negative.

My neuro gave me the option to extend out to 5 or 6 weeks if I wanted, but he wasn't recommending I do it. Just that some people want to due to inconvenience of getting the infusion, time off of work, or for financial reasons.

At my next appointment, I am going to ask about the dosing interval and conversion rate correlation to get his thoughts.

[gargantua]

Thanks ru4cats. I am staying put at 28 weeks as long as I stay negative.

My neuro gave me the option to extend out to 5 or 6 weeks if I wanted, but he wasn't recommending I do it. Just that some people want to due to inconvenience of getting the infusion, time off of work, or for financial reasons.

At my next appointment, I am going to ask about the dosing interval and conversion rate correlation to get his thoughts.

I think you meant 28 days, because 7 months would be really nice. pennstater thanks for sharing your neuro's thoughts. Mine is on the older side of young, with hundreds of patients at a reasearch hospital. It surprises me that he does not support EID either, but said he could be convinced if I do well in upcoming years or for other reasons. He's especially not behind doing it just for risk avoidance if not JCV +

During my 6 month checkup this past Monday he mentioned that Biogen is doing a formally registered study on EID. Since the study is formally registered, they have to report the results. So it should be interesting.

[Myoak]

I think you meant 28 days, because 7 months would be really nice. pennstater thanks for sharing your neuro's thoughts. Mine is on the older side of young, with hundreds of patients at a reasearch hospital. It surprises me that he does not support EID either, but said he could be convinced if I do well in upcoming years or for other reasons. He's especially not behind doing it just for risk avoidance if not JCV +

During my 6 month checkup this past Monday he mentioned that Biogen is doing a formally registered study on EID. Since the study is formally registered, they have to report the results. So it should be interesting.

May I quote and comment about one sentence concerning EID, extended interval dosing? "He's especially not behind doing it just for risk avoidance if not JCV +".

There has been no study published regarding the question of whether EID slows the rate of conversion from JCV- to JCV+. So, your neuro does not know any more about it than you or anyone else unless he is currently doing that study, and he/she isn't.

When a review was published years ago showing the rate of PML was higher in lower weight Tysabri patients than higher weight ones, common sense told us that less Tysabri concentration would allow the body better immune surveillance against JCV. That review demonstrated a 90 lb patient has greater PML risk than a 140 lb patient due to the concentration of Tysabri.

Common sense held that if a Tysabri patient extended time between doses, the concentration of Tysabri would be less and fewer cases of PML would result. But it took 5 years before a study was published confirming what common sense told us 5 years earlier.

That interval was not a happy time in my life because I fought like you would not believe with the treating neuro for dose extension. It took nearly a year to get my wife on dose extension. BTW, he also put his OWN wife with MS on dose extension at that time!

Here is my point... common sense says that with greater immune surveillance against the JC virus how likely is it the rate of conversion is NOT affected? Obviously, it is very likely the conversion rate will decrease with less Tysabri because JCV and PML is not a problem in the general population who are not taking Tysabri.

The problem facing neuros is two-fold... there is no published study for guidance so common sense must be used, but good luck on that front with a neuro, my experience was horrifically argumentative but I did so because life was at stake.

The second problem for neuros is... by extending dosing will MS be held in check? For most people on EID MS IS held in check: we have studies proving that point. BUT is MS held in check for you, or in aggressive cases? That rightfully concerns your neuro. What he/she knows is every 28 days is working and has an understandable reluctance to alter success.

For me, the common sense probability is that EID reduces conversion to JCV+. I have no scientific proof because there is none. But I had none about EID reducing PML rate but it certainly was easy to hypothesize using common sense.

When it comes to my life and those of loved ones I am fighting for what I believe, especially when I am convinced of its validity. Its my life; not my neuro's. I'd rather P off the neuro than convert to JCV+ needlessly. Tysabri is a superb MS DMT compared to the others.

Just my thoughts.