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This is what doctors won't tell us: tbc and cjd

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    This is what doctors won't tell us: tbc and cjd

    Few months ago I was asked to get x rays from my lungs, well not really asked, I had to. I declined it and that was that. So I started searching and found an article about TBC and that we are at a bigger risk. I emailed my doctor which he totally ignored.

    The latest article I can find about this is this one:
    http://informahealthcare.com/doi/abs...75.2014.962517
    Tuberculosis continues to be a serious health problem worldwide. The disease continues to be underdiagnosed and not properly treated. In conditions that affect the immune system, such as multiple sclerosis (MS), latent tuberculosis may thrive and reactivate during the use of immunomodulatory and immunosuppressive drugs. Among the best treatment options for patients with latent or active tuberculosis who have MS are IFN-β, glatiramer acetate and mitoxantrone. Drugs leading to a reduced number and/or function of lymphocytes should be avoided or used with caution. Tuberculosis must always be investigated in patients with MS and treated with rigor.
    Than there was another article of a women who passed away after using Tysabri for 5 years. They couldn't find any sign of PML in her autopsy but apparently her cause of death was Creutzfeldt-Jakob disease. They end the article with:
    Given the low incidence rate of CJD of 0.1/100,000,6 it is tempting to speculate about whether the patient's primary disease or the long-term treatment with natalizumab predisposed her to develop this particular condition. However, the absence of reports on the occurrence of sCJD in patients with MS, especially those on natalizumab, and no clear pathophysiologic links make a chance association most likely.
    For me personally this makes me mad as I feel they should tell us every bit of information they have. Especially the TBC thing seems to be a bit worrying.

    Any opinions on this?

    #2
    Well statistically, this one case you mention seems of immeasurable value. The woman could have been in an area where CJD was more likely to pop up or she could have inherited that gene. That is so rare that the woman seems to just have had bad bad luck. As for TB, I know I've been reading how it is making a comeback in the US, and plus you can get that from pigeons, other wildlife, even mice, so who knows how that played into it.

    You could call Biogen and ask about it. But yes there are many things doctors don't tell you probably they just have to hope you'll benefit instead of being an anomaly. But it's good to be aware like you are and to know what things to be careful of.
    ---------------
    "It's never crowded along the extra mile." --Dr. Wayne Dyer

    Comment


      #3
      Hmmm.

      I have asked my neuro specifically about this issue as I was exposed to TB as a child and was a "carrier." She told me it was not a concern -- possibly because I was treated for a full year with Isoniazid?

      Perhaps this is more an issue where TB is more endemic? I notice the researchers are from Brazil.

      Does anyone else know anything about TB and Tysabri?

      Comment


        #4
        Hi DexterMorgan,

        I agree with RockysMom about CJD (Cruetzfeldt-Jacob Disease). It is just too rare to connect it to Tysabri.

        As far the reactivation of latent TB with the use of Tysabri, this information published in 2012, could explain why lung x-rays are no longer listed as a "standard" screening protocol for patients:
        http://www.sciencedirect.com/science...65572811003614

        Latent tuberculosis seems not to reactivate in patients on natalizumab

        Current safety recommendations for multiple sclerosis (MS) patients who are considered for natalizumab do not specify how to screen for latent tuberculosis (LTB). Only chest X-ray is recommended as a routine, and follow-up depends on its results.

        The incidence of TB in Spain is high and the risk of a LTB reactivation due to natalizumab is unknown. Our objective is to describe in our clinical practice if following the current recommendations for the MS population on natalizumab allows identifying patients with a LTB, as well as the risk for TB reactivation.

        Our study demonstrated that, in our environment, current recommendations are not sensitive enough to identify cases of LTB, though no cases of active TB were observed. Considering the lack of documented active TB cases worldwide among natalizumab patients, we suggest that these safety measures are probably unnecessary, even in countries with a high TB incidence.
        JMO, but maybe your neurologist is only looking out for your best interest because of your past health history, including chest pain and breathing problems?

        Could be he wants to rule out any possibility of lung infections or pulmonary disease, including TB, by asking certain patients to have X-rays of their lungs now, instead of waiting for any official change to occur in the prescribing protocols for Tysabri. Based on this information, he may have a strong suspicion they will change sometime in the not too distant future. But, he is not obligated to share that information with you, yet.

        Protocols can/ do change. This may happen, but then again, may not. Even if he has legitimate rationale behind his thinking, there are some very intelligent neurologists that aren't necessarily the best in communicating that with their patients.

        Drugs leading to a reduced number and/or function of lymphocytes should be avoided or used with cautionTuberculosis must always be investigated in patients with MS and treated with rigor.
        If this is a valid concern, I think a new protocol will be put in place for the other DMTs not listed as well.

        Additional current information about prescribing Tysabri can be found here:

        http://www.nationalmssociety.org/Tre...Tysabri-%C2%AE

        http://www.tysabri.com/about/side-effects

        http://www.tysabri.com/prescribingInfo

        http://www.emedicinehealth.com/scrip...=103306&page=2

        Best wishes,
        Kimba

        “When you change the way you look at things, the things you look at change.” ― Max Planck

        Comment


          #5
          Originally posted by Special Kay View Post
          Hmmm.

          I have asked my neuro specifically about this issue as I was exposed to TB as a child and was a "carrier." She told me it was not a concern -- possibly because I was treated for a full year with Isoniazid?

          Perhaps this is more an issue where TB is more endemic? I notice the researchers are from Brazil.

          Does anyone else know anything about TB and Tysabri?
          WARNING: I am not a doctor.

          I do not have TB...but lived in an area (Korea) for two years where TB was rampant. We got tested semi-annually and many of my friends have been exposed...just like you.

          TB is airborne and one can only get it if exposed to someone with Active TB. People with Latent TB are not contagious.

          People exposed to TB and test positive will be given a series of medication over a period of several months. This in most cases completely eradicates the bacteria. However, some people even after treatment may still have Latent TB...they are in the minority.

          If TB does become active in the majority of cases it is very treatable. Especially if detected early. If you have any signs of TB a lung x-ray is imperative. Down side...treatment takes a long time.

          It is important to note that all of us are subject to TB...even here in the US, but not as much as many other Nations. Tysabri does not cause TB, it just increases the risk of Opportunistic Infections...and I think it makes sense to include TB on that list.

          Special Kay...I would trust your doctor and if it makes you feel better...bring it up again and discuss it.

          I just got tested for TB two years ago? It was negative. I however could be positive right now and not know it yet, because a child coughed on me yesterday. I could also be positive for JCV and not know it yet. I could also have cancer, some other auto-immune disease...heck PML might be lurking in my brain right now. Nothing I can do about it. I have worried enough over MS...I am "worried-out". I let my doctors worry for me.

          But today...thanks to Tysabri...I feel good enough to go to dinner and see a movie this evening. For me...it's a much more productive use of my time.
          Katie
          "Yep, I have MS, and it does have Me!"
          "My MS is a Journey for One."
          Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

          Comment


            #6
            Thanks, Katie!

            Yes, I underwent a full year of isoniazid, which is the standard treatment for latent TB.

            My exposure to TB was in childhood, and they wanted to wait until I was 18 to give me the medication. But the end result was that I went off to college with a bunch of medicine to take every day, with no evident reason/effect. I was a pretty responsible kid, but in retrospect (30+ years later), I'm not sure I was so perfect in my dosing. Probably 90% perfect.

            Anyway, my neuro knows all this and is not concerned, and I've done my own research, so I feel comfortable.

            Comment

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