JCV positive (what's your number) and going off Tysabri?

[LL60]

Myoak,

Thanks for the pep talk. I needed that, and I liked how you put things.

[Tomjadg]

Myoak

Thank you for the valuable information.

I printed it out to show my infusion nurse, who will get my Neuro's approval to go from every 6 weeks to 8 weeks for my infusions. He is pretty good about doing what I feel is best for me
I feel no different if I go an extra week or two for my infusion.

[LL60]

Tomjadg,

May I ask how long you have been at every 6 weeks? How long were you at the every 4 weeks? You notice no difference at all?

I went 8 weeks once due to other meds I had to be on at the time, steroids, and I noticed a big difference and it seemed to be a couple months to get back to where I was. May have been related or not, hard to tell. (Now I know I would not have had to stop the infusion, but at the time I went with what my doctor advised and he didn't really know for sure, so we erred on the side of caution.)

Hope your new schedule works out great for you.

[Tomjadg]

Hi LL60

I did every 4 weeks for about 2.5 years when my first(old way)JC Virus test was negative.
With the new test, I was a strong positive, so we decided to go to 6 weeks the last 3-4 infusions.

No. A steady decline over 4 years this month. It might be helping with no new brain lesions, but that is about it.

Thanks. If 8 weeks aids in dodging the PML issue, I will do that.

[Myoak]

Dose extension will probably be individually tailored, and rightfully so. For some, 8 weeks may be too long a time between infusions to keep MS at bay. There will a balancing act which will require a good neurologist making keen observations to perfect time between doses on one hand and disease efficacy on the other.

How did people get chosen for the dose extension trial? Neuros understandably may have put their better patients in the trial thinking those might fare better than those with a good deal of disease activity; a way of protecting their most vulnerable patients.

For highly active MS perhaps 4 weeks is optimum. None of the 586 enrolled in dose extension got PML but we will need reported data for thousands of MSers, possibly next year, to see if that pattern holds for everyone. Based on the evidence so far, dose extension looks very promising as a method to reduce PML risk.

4,5,6,7,8 weeks are all possibilities. Observant patients and doctors will have to monitor and adjust individually. Not easy but worth the effort to reduce PML risk in a meaningful way.

[Myoak]

A new way to identify PML risk was presented at the AAN meeting under the heading, “Lipid-Specific IgM Bands Contribute To Stratify PML Risk in MS Patients Treated With Natalizumab”.

http://www.neurology.org/content/82/...plement/P2.245

Investigators looked at 367 Tysabri patients; 23 of those developed PML.

Those who were JCV positive and had lipid-specific IgM bands in their CSF (Cerebrospinal fluid) had very low incidence of PML. This finding is dramatic because it identified JCV+ MSers at extremely low risk of PML. 21 or 22 out of 23 who got PML did not have these bands. So having the bands was protective, especially important to those JCV+.

The study’s conclusions, “The presence of lipid specific IgM bands contribute to identify JC+ patients at lower risk of PML during natalizumab treatment.”

Question… would a JCV positive MSer on Tysabri be willing to undergo the discomfort of a Lumbar Puncture for CSF analysis to better identify his individual risk of PML? Would that knowledge be helpful in deciding to continue Tysabri or stop?

Science is moving in the right direction for MSers on Tysabri. New ways of mitigating risk are being discovered.

I believe this IgM band test is a huge step forward. It is both exciting and comforting to think that we will soon be more capable of making treatment decisions based on science rather than guess.

Coupled with dose extension it is not difficult believe this IgM test will cause PML incidence to plummet. We have solid scientific reasons to be optimistic.

[dyin_myelin]

Question… would a JCV positive MSer on Tysabri be willing to undergo the discomfort of a Lumbar Puncture for CSF analysis to better identify his individual risk of PML? Would that knowledge be helpful in deciding to continue Tysabri or stop?

For the peace of mind and ability to curtail anxiety and stay on Ty, yes. I didn't even get a headache last one I got.