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Tysabri vs Pregnancy

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    Tysabri vs Pregnancy

    I'm new here. It has been almost 8 years since i was diagnosed with MS. I am 31 now. I have never felt the need to socialise with others having MS. It has just been my way of dealing with it, I still try not to think about it. Until now. I have been on Tysabri for just over a year now and it is definitely working. Zero symptoms since September 2017, no side effects and I get two hours to read a book every month (bonus!). I should mention that I have a son who is nearly two years old and after I gave birth to him, MS kicked me in the butt That was the reason my neurologist switched me to Tysabri.

    Long story short... I would like to have another baby and I am very confused and scared and I hate that MS is controlling my life... Is there anyone out there who hasn't stopped the infusions during pregnancy? Or stopped before getting pregnant? I would appreciate any advice and work of wisdom. Thank you. Marta.

    Hello Marta,

    First, congratulations on your determination to raise a family!

    Next, I will furnish a link to a study reviewing 355 pregnancies on Tysabri that you can read when you have time. There is a Tysabri thread of the similar title where I put this info, also.

    I will highlight just a couple of things. Obviously you will want to consult your treating neurologist and the more you know about this study will only help your consultation.

    My personal take was that the 355 pregnancies were similar to the general population, however, that is my subjective view that some would rightfully argue. Possibly the most important stat in this study found was this....

    A birth defect rate of 5.05% in Tysabri patients vs 2.67% in the general population. Important also, is that there exists no statistic on the rate of birth defects in untreated MS patients. You should ask your neuro if he/she is aware of of such a stat and if so, I would love if you could post it here.

    So, not knowing the rate of birth defect among MSers and knowing it is 5.05% in Tysabri patients and 2.67% I characterize it as somewhat similar, not terribly different. JMHO. Others may disagree wholeheartedly with that characterization and that is understandable.

    The bottom line is how you and your neuro think of it. Be sure to work closely with your neuro. Here is the link and a couple of quotes from the study...

    "The Registry birth defect rate of 5.05 %, as determined by the Advisory Committee, was higher than the 2.67 % published in the MACDP [25]. No pattern of defects suggestive of an unusual distribution was observed. Because birth outcome reference information specific to untreated MS or CD patient populations is not available, the MACDP was used as an external reference group."

    "Information was collected about natalizumab exposure, potential confounding factors (e.g., medical history, concomitant medications, or smoking), pregnancy outcomes, spontaneous abortions, fetal losses including stillbirths, and ectopic pregnancies. In addition, data were collected for elective or therapeutic pregnancy terminations, live-born infants, and birth defects.

    Birth defects were reviewed and coded by an independent birth defect evaluator (a specialist in pediatrics and genetics) in accordance with the Metropolitan Atlanta Congenital Defects Program (MACDP) classification of birth defects [24]. A major birth defect was defined as one characterized by a major structural or chromosomal abnormality in any live or stillborn infant or electively terminated fetus; any other birth defect was classified as minor. The MACDP excludes birth defects that are attributable to prematurity alone or identified prior to 20 weeks’ gestation. At the end of the study, an independent scientific advisory committee, consisting of 3 experts in relevant specialties of teratology, epidemiology, and maternal and fetal medicine, evaluated all Registry outcomes."

    The Registry prospectively evaluated pregnancy outcomes in patients treated with natalizumab within 3 months of conception or during pregnancy. The overall rate of major birth defects in the Registry was higher than that reported by the MACDP. No specific pattern of birth defects was observed that would suggest a drug effect. The rate of spontaneous abortions was consistent with the expected background rates observed in the general population [26–28]. Although not observed in the Registry, one report has described transient hematological abnormalities in infants exposed to natalizumab during the third trimester [38]. The natalizumab prescribing information indicates that natalizumab should be used during pregnancy only if the potential benefit justifies the potential risk to the fetus [6]; although the Registry has noted limitations and more research is needed, the findings from the Registry may be informative to clinicians and patients in weighing potential risks and benefits of natalizumab exposure during pregnancy.


      Hi Marta,
      I was wondering if you were aware that one of the most common incidences of ms rearing its ugly head is documented as coinciding with a new arrival?

      I had probably had ms for years with not much more than minor issues to deal with.
      Then BAM.. i was sooo tired during pregnancy that i slept most of the time and not long after birth i had my first major attack ,which resulted in almost complete paralysis for a time and a 2 week stay in hospital.

      This did take a lot to recover from and it wasn't easy looking after a new born baby and also dealing with the ongoing pain and weakness.

      But- it took another 10 years to get my official diagnosis -apparently, it was all in my head- head AND spine actually- so in that time we managed to have an additional 4 children.
      NOT PLANNED mind you, just took a while to figure out what was causing the issue.

      The thing is that i didn't have any more major attacks with additional pregnancies.
      Ongoing issues yes that some one not dealing with ms would think unusual but normal for me.

      I have now had ms for about 33 years and my eldest is almost 31. And he has given me a beautiful grand daughter to spend time with

      I have since done some research on ms and pregnancy.
      Statistics show that women who have more than 1 or 2 children seem to endure less frequent and less severe exacerbation's than those who have none, 1 or 2. And so in the long term sustain less damage to come back and bight them on the behind later.
      No real reason for this has been determined definitively just ongoing theories.
      The one i lean towards most strongly is to do with hormones.

      So even though we didn't 'plan' to have 5 children (i actually requested tubal ligation after 3 but doc said 'too'young)and used traditional birth control - not only do we not regret the joy they gave i apparently benefited by lessening my lesion load by carrying them.

      This may not be of much help to you but i hope it lessens your concerns a little