Does anyone know?

[hobbit]

My JCV test came back positive with a whopping 3.37 titer. My family is insistent at this point that I stop Tysabri. I am not thrilled with any of the other options out there. Copaxone and Rebif failed.

Now that I'm JCV+ and can no longer have a transplant, I am reluctant to put any organs at risk, plus my hair just started growing back.

I know a study was done regarding extended dose on 586 patients with 0 cases of PML

Question - Do we know titer levels for patients involved ad how long was the study?

Thank you.
Anna

[perkylady]

Anna,

The decisions you face are so difficult, you have my deepest empathy, girl.

A couple good articles for you to Google would be "JCV Test Stratifies PML risk in Antibody-Positive MS" a medscape article and "MS Rebound After Stopping Tysabri" the later article is found at the MS-UK.org site.

"Reducing PML Risk on Tysabri" is another good article found at ActiveMSers.org website containing information you asked about.

You have my thoughts and care.

[pennstater]

I am sorry to hear. I am not sure of number of patients, but thought the theory of extension was based on 6 week activation cycle for Tysabr, and that extending it to 8 weeks gives your body a chance to fight off any opportunistic infection.

Not sure of correct terminology for above, but thought that was general idea.

Good luck to you.

[lindaincolorado]

For approx 6 months I have been getting my infusions every 6 weeks. I asked for this since the 2014 AAN conference a small study showed that going for longer intervals showed that some 500 jcv+ did not have a case of pml. A couple days ago at my reg appt with my neuro he asked if I would extend to every 8 weeks as that was where the data is. I, of course, said o k. I am blessed to be able to go to the RMmsC and I so like my neurologist My last jcv test was .27 - .20 is neg and .40 is postive and then there is something about .9

[palmtree]

I have read through many of those articles carefully and I don't see any real concrete proof that the increase in JC titer on Ty leads to PML. It's interesting data but it's not convincing.

The people who are on other immune suppressants and have a high titer number have an increased risk, but there is no data showing a connection between a high titer number and PML for those who are not on other immune suppressants.

Therefore, I think there is a lot of extrapolating.

[diggstech]

Unless members of your family have an MD specializing in Neurology I would go with with what your neuro says. My sister was on Tysabri for 9 years, 5 of them JCV+. Now they are moving her to Lemtrada becuase her JCV titer got too high. The good news for you is that since like my sister copaxone failed for you, if you ever have to go off Tysabri, you will qualify for Lemtrada as that is the minimum requirement, 2 failed therapies. I would just wait to let the neuro make the call.