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What exactly does "Indeterminate" mean on JCV test

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    What exactly does "Indeterminate" mean on JCV test

    My JCV test results say low level positive and indeterminate for JC antibodies. It does give a Titer level but I have since found what those levels are for Indeterminate. What I don't understand is what does Indeterminate mean? Is positive or negative? Or is it to close to call. My report says positive. I'm so confused. Based on the initial report my Neuro is against starting me on Tysabri. I am currently taking Tecfidera and my last MRI, about 2 months ago, showed numerous new lesions in my frontal lobes. So in my opinion the Tecfidera is not doing it's job. I want to take something that will work but won't kill me at the same time.

    Any suggestions or input would be greatly appreciated.
    Dx'd 4/1/11. First symptoms in 2001. Avonex 4/11, Copaxone 5/12, Tecfidera 4/13 Gilenya 4/14-10/14 Currently on no DMT's, Started Aubagio 9/21/15. Back on Avonex 10/15

    It's hard to beat a person that never gives up.
    Babe Ruth

    #2
    Indeterminate means not clearly determined.

    The people who developed the currently used JCV assay established that when an index falls between .20 and .40 the results cannot be clearly determined. This assay is not for JC virus. It is for anti-JCV antibodies.

    Antibodies, in this case, are formed in response to JC virus. The presence of anti-JCV antibodies does not always indicate the presence of the JC virus. Your body could have gotten rid of the JC virus but antibodies remain. For example, look at EBV.

    EBV (Epstein - Barr virus) values often appear on the results of a MSer’s blood test. High EBV numbers expressed in IgG (immunoglobulin) antibodies indicates infection sometime in the past, not recent or current infection; antibodies were measured, not active virus.

    Remember, it is anti-JCV antibodies which are being indexed. Those who developed the JCV assay published recommendations which state that when the index fell between .20 and .40 they could not clearly determine whether the person was positive or negative for the JC virus.

    Individual doctors may have their own prejudices and protocols. They may practice based on opinions which differ from the recommendations put forth about the JCV index.

    With 10 meds and more to come MS is rapidly becoming an arena of individual tailoring. Hopefully, medicine choices can be worked out in discussions, not arguments.

    Everyone benefits when a patient has educated himself on treatment options and can discuss those with his/her doctor. It is a more comfortable path for doctor and patient.

    If you want to take something effective that appears pretty safe consider rituximab. Not a great deal of data on it as used in MS but the data which can be found looks pretty darn good. Educate yourself on rituximab. It has a story and history worth knowing.

    Since it isn't one of the FDA approved DMTs for MS some doctors won't even consider it. Here's to hoping you have an exceptional doctor!

    Best wishes.

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      #3
      Myoak thank you for the reply it was very enlightening. I don't know if you saw my other post directed specifically towards you but you answers my question here.

      However, you do raise one other question. I have read up on Rituximab or Rituxan and it too has a risk for PML if one tests positive for JCV antibodies. So with that in mind what is the difference in taking Rituxan over Tysabri an approved protocol for MS? I do hope you read this.
      Dx'd 4/1/11. First symptoms in 2001. Avonex 4/11, Copaxone 5/12, Tecfidera 4/13 Gilenya 4/14-10/14 Currently on no DMT's, Started Aubagio 9/21/15. Back on Avonex 10/15

      It's hard to beat a person that never gives up.
      Babe Ruth

      Comment


        #4
        Hello,

        Great that you have read up on rituximab. And, yes it does carry risk of PML. But as it stands right now, the main difference between Tysabri and Rituximab is PML risk, IMO.

        Very important to keep in mind rituximab doesn’t have anywhere near the track record Tysabri does in MS. It is possible safety issues would appear over time with greater use.

        Also, Tysabri’s effectiveness in MS is well-established. Rituximab has proven effective in small trials but lacks proof from large trials in MS. The two appear comparable in effectiveness but rituximab is far short of conclusive data proving it.

        If we make a leap of faith and believe the two drugs have similar efficacy we come to the question… what is the difference? The answer is... PML risk as presented by Berger’s Handbook of Clinical Neurology.

        Here is what was said about risk of developing PML on Tysabri… “Depends on JC virus antibody status, duration of administration, and prior immunosuppressants. Ranges from 1:1000 in 1-24 months in JC virus-seropositive subjects and no prior immunosuppressants, to >1:100 after 24 months in JC virus-seropostive subjects with prior immunosuppressant use.”

        Here is what was said about risk of developing PML on Rituximab… “1:30,000”

        There is speculation that PML may have been under reported in rituximab used for lymphoproliferative disorders, RA, SLE, and AIDS. It is possible risk of PML is higher than 1 in 30,000 but for now that’s what the handbook says.

        It may wind up having more risk, less risk, or about the same risk as Tysabri when/if used in MS. Data doesn’t exist at this time to know for sure.

        Some neuros believe rituximab is another legitimate treatment option in MS; others do not. I understand both positions.

        Best

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