SMA News Forums Forums Treatments and Research Spinraza (nusinersen) Hydrocephalus a side effect of Spinraza?

  • Hydrocephalus a side effect of Spinraza?

    Posted by deann-r on August 5, 2018 at 2:06 pm

    An article has been circulating on social media regarding Hydrocephalus being added to the list of Spinraza’s possible side effects on the UK label.  Here’s the article link:  https://www.treatsma.uk/2018/07/a-potential-side-effect-added-to-spinraza-label/

    I admit this was slightly unsettling at first, however I read the entire article and there are a couple things to point out.  First this article mentions there have been 5 reported cases out of 5,000 patients being treated.  If I did the math right that’s .1%.  Relatively small in my opinion.

    Second the Biogen statement indicates “it has not been established that hydrocephalus has been caused by nusinersen.” What does that mean?  Well, I think they’re referring to other causes such as the procedure, or the patient having an underlying reason for getting this.  I’ve heard a lumbar puncture can carry a slight risk of hydrocephalus, so even though it could be from that, it’s the way the medication is administered.

    From the sounds of it doctors are already cognizant of this risk, so any concerns about getting/continuing treatment should be brought to them.  In my view this is great to be aware of, but not something to panic about.  For me the risk/reward ratio is still positive so the latest news isn’t changing my decision to continue treatments.  What are your thoughts about this?

    michael-morale replied 5 years, 9 months ago 2 Members · 1 Reply
  • 1 Reply
  • michael-morale

    Member
    August 5, 2018 at 5:49 pm

    DeAnn – I saw the same article that you are referring to. I did a video on my personal YouTube channel last Wednesday regarding this topic. While there have been no reported cases of hydrocephalus from those of us in the United States who are on active treatment with Spinraza, the only thing I did was to advise my subscribers to talk to their doctors regarding this subject so that at least they are aware of it.

    Click HERE to view my video.

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