.49 jcv index

[pballer76]

My jcv was .49 a year ago. At the time it was to high for my neuro to put me back on Ty. I have been off Ty for over a year. I have gotten low WBC on gilenya and tecfidera. My neuro is sending me to a specialist to decide what to put me on.
Does the PML risk change if you stay off tysabri?
I have done tysabri 73 times.
I think I already know the answer.
There hasn't been any studies

[PhiSiggyro]

I am interested in an answer to this too if there is one. Tec isn't doing it for me after a year on it. Would rather be on tysabri again after 4 years on it.

[Myoak]

.49 is a very low index number. Remember, .20 to .40 is a grey area recognized as indeterminate of being positive or negative. Yes, if you were .39 a doctor following rigorous standards would have to categorize you as JCV indeterminate. If he doesn't, he is not accurately interpreting results.

One big risk factor for PML using Tysabri is prior therapy with immunosuppressants. This does not include short-term pulsed steroids for combating a flare-up.

The 3 recognized risk factors are JCV status, number of infusions, and prior immunosuppressant use.

It would be most interesting to see if time away from tysabri allowed a re-constituted immune system to diminish the JCV index number, or not.

But .49 is a very, very low index, already. My guess is that you may have been on prior immunosuppressant therapy. Otherwise, removing an highly effective treatment for someone .49 is understandably going to be questioned if a subsequent treatment is not as effective. Yes, Tysabri has risk but MS has risk, also.

Presently, there are no published data available on using Tysabri beyond 72 months. It will come in time because many continue on it.

Lastly, quite recently dose extension has become widely used as a technique to possibly reduce PML risk. A poster was presented at the AAN meeting earlier this year involving dose extension. Hopefully, the paper will be out later this year and more neuros will be comfortable employing that technique; going 6,7 or 8 weeks between infusions to improve immune surveillance.

[pballer76]

Prior immune suppressants

I have been on Avonex, rebif, tysabri, tecfidera, copaxone and gilenya. Are any of those immune suppressants?
My neuro did say I wouldn't be on any med until my white count gets back into the normal range. It is at 2.70.

[Myoak]

Pballer,

The immunosuppressants Biogen refers to in the context of PML risk on Tysabri are mitoxantrone, azathioprine, cyclophanolate, methotrexate, and mycophenolate and a couple others very seldom used.

They are not talking about the meds you mentioned.

Always check with your treating doctor on such an important issue. Biogen's stats show a 3 to 4 fold greater risk of PML using the immunosuppressants listed above than not having used them prior to Tysabri.

Obviously, these are issues to discuss with your doctor. The more informed your are the better equipped you will be to participate in treatment discussions and decisions.

Best to you.

[Waydwnsouth1]

Even more confused

I visited my Neuro Monday and he told I tested positive for the JC antibodies. He went on to say that the report stated I was "Low level" positive. Now I don't know what that low level means. I asked him what my Titer level was and he said it was not in the report but there was another report to follow. How does someone find out what their Titer level is? I would sure be curious to know.

I had a long talk with a rep from MS Active Source this morning and she has me rethinking my position on taking Ty. But before I do anything I sure would like to know the definition of LOW LEVEL.

Anyway if anyone can tell me how to find out what my Titer level is I would greatly appreciate it. Thanks.

[Myoak]

You will have to ask your doctor what index number he characterized as “low level”. Strange he could say low level if he didn’t know the index number.

Others have said that a doctor must specifically request the index number on the prescription form he writes for getting the JCV test. So if your doctor didn’t request it, perhaps the lab didn’t include it. In any case, your doctor will have the lab report and you can request to see it.

There is good information in threads at this site about JCV index numbers. Keep in mind that JCV is one of 3 risk factors; prior immunosuppressant use (see post above), and number of Tysabri infusions are the other two.

MS forces us into a guessing game when it comes to treatment choices. There are no guarantees with any DMT used in MS. We learn as much as we can then make the best guess for ourselves. Your neuro should be helpful with the process.

Good luck!

[ru4cats]

Quest Diagnostics test code

I've been having a heck of a time getting my index number because I am JC-. From what I've read, I still should have a number, albeit it being a low one.

I finally called Quest, and the individual I spoke to said to add the test code #91665X to the script. I don't know if this code is specific to just Quest or is the standard code for the JC virus test that provides the index number.

I won't know if this works until October when I go for another test. I figured this might help someone else

[pballer76]

.43 jcv index

My last jcv test came back at .43. I just saw the ms specialist and he doesn't recommend tysabri for me. I have been on Avonex, rebif, tysabri 73 infusions, tecfidera and gilenya.
The ms specialist recommend I go on tecfidera again till daclizumab, Lemtrada or ocreluzumab are approved.
I was taken off the tecfidera because my white count was down to 3.1 and I developed psoriasis.
The ms specialist said he was ok with the 3.1 because my lymphocytes, neutrophils and absolute lymphocytes/ neutrophils were normal.
Tysabri worked great for six years but my neuro and ms specialist will not put me on it again.

[Tomjadg]

That's a low positive number. I'm not sure why they took you off Ty.
As an informed patient, I think YOU have the right to decide what you want.