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STUDY: Early Diagnosis of PML

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    STUDY: Early Diagnosis of PML

    "PML related to natalizumab (Tysabri) is detectable prior to symptoms in 32/41 (78%) of cases. The authors advocate MRI surveillance, but a better approach in my opinion is avoiding the drug in high risk patients. Asymptomatic PML is often overlooked." - posted on Twitter by Dr. Brandon Beaber

    https://jnnp.bmj.com/content/early/2...18-319208.long
    All the best, ~G

    #2
    One thing we know for sure.. the good doctor does not have MS!

    He is young, only practicing since 2009 and his opinion reflects a youthful lack of judgement. Also, he works for Kaiser Permanente, an insurance - healthcare consortium which has a history of making treatment decisions based on what is best for the bottom line of the company.


    Let's examine his misguided opinion from the standpoint of a patient rather than an insurance company doctor.


    In cancer, if a cancer patient is cancer free for 5 years they are often regarded as "cured"; the phrase used is that they, "have beaten cancer". However, a different standard is applied to PwMS using Tysabri. Possibly, because you have to keep taking it? Be that as it may, my central point is this... Tysabri is the equivalent of a cure for many PwMS. Many have gone more than 5 years with no evidence of disease activity (NEDA). What person with MS in their right mind, using sober and careful judgement would give that up a cure (under the cured of cancer definition) for MS because it carries a remote risk of PML? Ridiculous!


    Even with a high JCV titer the overwhelming majority of PwMS on dose extension with Tysabri WILL NOT get PML. Certainly less than 1 in 400. I'm not going to explain that figure other than to say it is my own rough estimate based on the complex Ryerson study where they used 3 different definitions of dose extension and I combined all 3 groups to arrive at the 1 in 400 figure for those JCV+ on any form of dose extension.

    In the context of what we have seen so far with dose extension I betcha when the data comes out there will be more cases of PML for those on 5 week dosing than on 7 week dosing at equivalent JCV titers. We have to wait for the data but it may be that for those on 6, 7, or 8 weeks the PML risk could be less than 1 in 1000 for some JCV titers. There will be more data coming out next year which will be more specific... that is, PML cases according to more specific JCV titers and length of treatment... more stratified than merely grouping everyone together if they are over 1.5 and classifying anyone over 1.5 as having a "high" titer.


    The important point of the early diagnosis of PML study is that PML can be identified on MRI BEFORE symptoms present. PML treatment at an early stage is far more successful than discovering and treating it later after symptoms manifest.


    YOU HAVE TO HAVE SOMEONE READING THE MRI WHO IS CAPABLE OF IDENTIFYING PML ON MRI!!


    That is why I always preferred the neuroradiologist at the MS Center. Not all radiologists have the expertise to identify PML on MRI. So, for those having MRIs on Tysabri… when you go in for an MRI just tell them the real and true reason... they are to look for PML... not because you have symptoms of it but to identify asymptomatic PML. I used to do this and it would PO the treating neurologist for some reason but I didn't care. Yes, the MRI is to check for new or enhancing old lesions BUT THE PRIMARY REASON IS TO LOOK FOR SIGNS OF PML SO TREATMENT CAN BEGIN BEFORE SYMPTOMS APPEAR BECAUSE MOST PEOPLE HAVE A SUCCESSFUL OUTCOME IF THEY DO.


    That is the real takeaway for the study. Dr. Baeber is totally full of sheet from the PwMS point of view. He is an insurance company doctor concerned for Kaiser Permanente's bottom line. Tragically, and I do mean tragically, doctors like him are making policy decisions insurance companies are only too happy to follow and deny coverage if someone is JCV+ on Tysabri. I heard Kaiser did just that a few years ago. I don't know if it is true nor do I know if they were sued and it is their present policy. However, the danger to MSers are doctors like Baeber.


    The real takeaway of the early diagnosis PML study is make certain your MRI reader can identify PML on MRI. That is what could affect your health tremendously. Don't assume they can; ask or mention it. You are paying for it, get what you need and are paying for.


    Another link about the study... http://multiple-sclerosis-research.b...-pml.html#more

    PS... On the subject of assuming I'm going to take my own advice and not assume everyone on Tysabri knows what happens if you are diagnosed with PML... Here is the protocol... they will do a plasma exchange to remove the Tysabri from circulation, allowing immune reconstitution in the CNS.

    We know that the JC virus does not present a problem in the general population because well over half the population tests JCV+ and virtually no one gets PML... except when the immune system is compromised, such as can happen with Tysabri. JC virus is one of the easier viruses for a proper functioning immune system to defeat as evidenced by the fact that so many have the virus but virtually no one gets PML.

    So, the goal is to identify PML as early as possible in the CNS by MRI and reconstitute the immune system as rapidly as possible by removing Tysabri and allowing the immune system to defeat the virus.


    Also, meds which kill JCV are being explored. Mostly, they are anti-malarial drugs at this point. Personally, I would love to see artesunate trialed in that regard. Extremely promising, IMO.

    Comment


      #3
      Thanks Myoak,

      Reading your post, I understand that the problem with “but a better approach in my opinion is avoiding the drug in high risk patients” is he's implying people who have been on Natalizumab for a long time - regardless whether it is working great - if they become high risk for PML (JCV+), should discontinue it. And possibly, he also means people who are JVC+ at the outset should not go on it. The problem with that statment is, he does not seem to take into consideration the patient's viable option to go on extended dosing to reduce their chances of PML while continuing to benefit from Natalizumab’s efficacy.

      It is pretty easy to google studies about the efficacy of Natalizumab outweighing the risks of PML, but doing a cursory search I cannot find much that shows, “Asymptomatic PML is often overlooked.” I know I have seen some figures about PML findings and I do not recall them causing me to be too alarmed, based on the stats I accepted when I started taking Natalizumab.

      I will be watching closely for the results of the study you cited that will contain more detailed data on extended dosing. Regarding getting a guarantee that a radiologist can read for PML, that could be challenging for some people (economic, geographic, communication). So I too look forward to even more progress with preventing JCV and PML as well as just doing extended dosing. My doctor has not approved it across the board for me, but I’ve only been on the drug for 4 months with a lot of disease activity and am low risk. He said I could go 6 to 8 weeks here and there for now but not consistently, due to concerns about continued efficacy - he tests for JCV every 3 months, but wants me to be on it a little longer I suppose (to be continued…). I like him, but I'm still getting in his head!
      All the best, ~G

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