JCV index

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JCV index

Postby pballer76 » Fri Nov 29, 2013 5:58 am

I am JCV+. I used tysabri 73 times. I switched to tecfidera, used it for 4 months.
My neuro had me stop taking it. I had 1 flare and developed psoriasis while on tecfidera.
I want to get back on tysabri. I did the index blood test and I am a .46.
Does anyone know what this means? I want to know what my risk of PML is.
I have used Avonex, Rebif, Tysabri, and Tecfidera.
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Re: JCV index

Postby cheerleader » Fri Nov 29, 2013 6:27 pm

I'm really sorry you find yourself on here, asking this question, pballer.

I'll explain the index for you and include links for you regarding risk stratification.
Sorry your doc didn't explain. He or she should have.

The antibody index blood test for you is .46--if you had no prior drug treatment and used Tysabri for less than 2 years, your accessed risk for PML would be 5 in 1,000.
http://www.medscape.com/viewarticle/806294#1

But the fact that you have used other meds, and used Tysabri for longer, there is "insufficient data" available about your risk.
Know that it is higher than 1 in 89.
The fact is that we just really don't know about long-term use yet.
http://multiple-sclerosis-research.blog ... -2013.html

Hang in there. Do all you can to reduce inflammation with nutrition, lifestyle, diet, and exercise.
http://ccsvi.org/index.php/helping-myse ... ial-health
Hope this info helps,
cheer
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dx dual jugular vein stenosis (CCSVI) 4/09
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Re: JCV index

Postby HarryZ » Sat Dec 07, 2013 6:45 am

pballer76 wrote:I am JCV+. I used tysabri 73 times. I switched to tecfidera, used it for 4 months.
My neuro had me stop taking it. I had 1 flare and developed psoriasis while on tecfidera.
I want to get back on tysabri. I did the index blood test and I am a .46.
Does anyone know what this means? I want to know what my risk of PML is.
I have used Avonex, Rebif, Tysabri, and Tecfidera.


As Cheer stated, your doc should have explained to you exactly what this test result means. With a possible risk of 1:89 of coming down with PML, this has huge ramifications on your health and what medications you should be taking.

I would call you doc and politely demand you be totally informed of what is going on.

Harry
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Re: JCV index

Postby centenarian100 » Mon Dec 23, 2013 9:53 pm

cheerleader wrote:The antibody index blood test for you is .46--if you had no prior drug treatment and used Tysabri for less than 2 years, your accessed risk for PML would be 5 in 1,000.
http://www.medscape.com/viewarticle/806294#1

But the fact that you have used other meds, and used Tysabri for longer, there is "insufficient data" available about your risk.
Know that it is higher than 1 in 89.


The opening poster doesn't have any significant exposure to immunosppressants (unless one would count tecfidera). immunosuppressants are drugs like azathioprine, cyclophosphamide, rituximab, novantrone, chemotherapy regimens, et cetera. ABC drugs are certainly not immunosuppressants. Immunosupressants make the JCV antibody index irrelavent based on biogen's data.

I'm not exactly sure from where you are getting this figure (1/89). The data in the article don't go past 72 months, but placing the opening poster in the 48-72 month category without a history of immunosuppression with an antibody index <0.9, the risk is estimated to be 0.4 per thousand.

Now, the opening poster's risk may be higher due to longer use. Also, the data are from biogen, so who knows how well we can trust the results.

-C
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Re: JCV index

Postby HarryZ » Wed Dec 25, 2013 9:54 am

Also, the data are from biogen, so who knows how well we can trust the results.

-C


I don't think the word "trust" and "Biogen" belong in the same sentence.
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Re: JCV index

Postby cheerleader » Thu Dec 26, 2013 2:41 pm

centenarian100 wrote:I'm not exactly sure from where you are getting this figure (1/89). The data in the article don't go past 72 months, but placing the opening poster in the 48-72 month category without a history of immunosuppression with an antibody index <0.9, the risk is estimated to be 0.4 per thousand.er in the 48-72 month category without a history of immunosuppression with an antibody index <0.9, the risk is estimated to be 0.4 per thousand.
-C


I got the information from this slide, C, which I linked above in my response. It was created by neurologist Dr. Giovannoni for his MS Research site and is the latest info on PML risk.
http://multiple-sclerosis-research.blog ... -2013.html

Please note that it shows that in the 48-72 month category with prior IS usage the risk is unknown, due to insufficient data-- but it would be greater than 1 in 89, which is the risk for the 25-48 month group. I was considering Tecfidera to be prior IS, but if it is not---the risk rate for PML in a JCV+ individual is 1 in 164. Apologies for confusion.

Agreed, Harry--the info is from Biogen. I recommend patients keep an eye on the eHealthMe site for PML risk numbers, where about 3% of all Tysabri users have reported PML.
http://www.ehealthme.com/ds/tysabri/pml
cheer
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Re: JCV index

Postby centenarian100 » Wed Jan 08, 2014 7:43 pm

cheerleader wrote:Please note that it shows that in the 48-72 month category with prior IS usage the risk is unknown, due to insufficient data-- but it would be greater than 1 in 89, which is the risk for the 25-48 month group. I was considering Tecfidera to be prior IS, but if it is not---the risk rate for PML in a JCV+ individual is 1 in 164. Apologies for confusion.


I think what the opening poster is getting at is that s/he happens to have a low JCV Ab index which, according to biogen's data, seems to confer a much lower risk of PML. Most of the PML cases were in people with a JCV Ab index > 1.5
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Re: JCV index

Postby centenarian100 » Wed Jan 08, 2014 7:45 pm

HarryZ wrote:I don't think the word "trust" and "Biogen" belong in the same sentence.


haha...perhaps not. I don't think I would give Novartis or Teva much trust either for what it's worth.
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Re: JCV index

Postby HarryZ » Thu Jan 09, 2014 8:51 am

centenarian100 wrote:
HarryZ wrote:I don't think the word "trust" and "Biogen" belong in the same sentence.


haha...perhaps not. I don't think I would give Novartis or Teva much trust either for what it's worth.


You've got that right! All of these pharma companies have been known to "bend" the truth when it comes to their MS medications. Can't have info out there that is bad for sales, can we?!
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