Originally posted by sarabeach123
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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!
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