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Tysabri and Pregnancy

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  • Tysabri and Pregnancy

    Hello,

    I'm looking for guidance based on the most recent research on Tysabri and pregnancy. What are you seeing on potential risks to fetuses, especially incidences of malformations, when mothers conceive while on Tysabri?

    For a little background, I've been on Tysabri for three years; I began the drug due to a very aggressive onset and progression in my disease activity. With my last child, my previous neurologist suggested that I remain on Tysabri until I had a positive pregnancy test. He said that, given the severity of my relapses before Tysabri, he did not want me to go through a washout period. I was told to stop the drug once I was pregnant. I gave birth to a little boy in 2013. He was diagnosed with Post Urethral Valves during the pregnancy, and he was born in renal failure. He died at 8 days old. My previous neurologist, antenatal, and neonatal doctors do not think that my son's problems were caused by the Tysabri.

    I am now considering trying for another child, and I have no idea what we should do regarding my Tysabri usage. My current neurologist (with whom I do not have a good doctor-patient relationship) is very insistent that I come off of Tysabri at least 3 months prior to TTC, although current research coming out of the Tysabri Pregnancy Exposure Registry suggests no increased risks for babies conceived on the drug.

    I am scared to conceive on the drug, given my boy's malformation, but I am also afraid to go through a washout period, during which I might have another major relapse and not be able to have a child at all.

    Any information is appreciated.
    Last edited by ca2012; 09-08-2014, 11:09 PM.

  • #2
    Hi, thanks for your post.

    I'm not sure we have much to add to this discussion. There have not been any controlled trials looking at Tysabri (natalizumab) safety in pregnant women, nor are there likely to be in the foreseeable future. The pregnancy registry has only case studies and, as you said, has not identified an increased risk specifically attributed to Tysabri.

    Posterior urethral valves occur in 1 in 5000-8000 pregnancies. I'm sorry that it happened to you. There has not been an association between Tysabri and posterior urethral valves established in the medical literature.

    Tysabri is an FDA pregnancy risk "C." The “C” drugs are those that have no good studies available, or have a few worrisome studies in animals but no good evidence in people one way or the other. Most drugs start out as a “C” while basic research is still going on. The decision to use this drug or not is a balance between the well known benefits to you and the not-so-well-known risks to the fetus. I believe that the pregnancy registry data is the strongest available argument for continuing to take it during your pregnancy.

    Please call us at the InfantRisk Center if this has not completely answered your question. (806)352-2519

    -James Abbey, MD

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    • #3
      Hi :-)

      Hi, hope you don't mind I found your post whilst looking for new research!

      I previously had a child before I was on Tysabri during which I was diagnosed with MS and relapsed aggressively throughout the pregnancy. I began Tysabri after he was born... and was on no medication throughout pregnancy. My little man was born with multiple heart defects, but thankfully, despite 2 open heart surgeries in his first 6 months of life he is still with us.

      I have done a fair bit of reearch on this subject (Im currently pregnant and back on Tysabri after originally having the washout period, so its of particular interest to me)

      Whilst I cant offer medical advice you are more than welcome to join a private Facebook group I have created where i have a nice amount of information and links compiled to various research and case studies. There are also 40 other very friendly ladies at various stages or pregnancy or family planning, all whome are on or have been on Tysabri.

      If you would like to join, I have allowed emails from members of these forums so feel free to message me and i will send you the link and ask your name so I know it is OK to accept your join request.

      Regards,

      P.

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      • #4
        Thank you for your responses. I have sent you a private message mrsp83.

        Thanks again.

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        • #5
          Could you send me the facebook information? I have a 7 month old after Copaxone failed me and on Tysabri now. I too contemplate pregnancy and staying on tysabri. Thank you

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          • #6
            Tysabri

            Krisg923 thanks for posting,

            Tysabri is an FDA pregnancy risk "C", or the new rating is now "P3", defined as Unknown, risk to fetus cannot be ruled out. The ?C? , or "P3" drugs are those that have no good studies available, or have a few worrisome studies in animals but no good evidence in people one way or the other. Most drugs start out as a ?C" or "P3" while basic research is still going on. The decision to use this drug or not is a balance between the well known benefits to you and the not-so-well-known risks to the fetus. I believe that the pregnancy registry data is the strongest available argument for continuing to take it during your pregnancy. (previously answered by James Abbey M.D.) If you would like to register in the TYSABRI Pregnancy Exposure Registry call 1-800-456-2255. If you have any other questions please contact the InfantRisk Center at 806-352-2519. Thanks

            Sandra Lovato R.N.
            InfantRisk Center

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            • #7
              Hello. I’ve gotten pregnant recently on tysabri and am not sure what to do. I would appreciate any and all advice on whether I should, 1. Continue on tysabri until third trimester, 2. Stop now in my first trimester and only take IV steroids if I have a relapse, or 3. Stay on tysabri the entire pregnancy.

              I have ave seen so many stories but really don’t know what the best decision is.

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