SMA News Forums Forums Treatments and Research Spinraza (nusinersen) Is Covid-19 stopping your Spinraza treatments?

  • Is Covid-19 stopping your Spinraza treatments?

    Posted by jim-schneider on April 21, 2020 at 5:31 pm

    I’m curious if people have been able to receive their Spinraza injections with the Covid-19 issues.  I also would like to know if anyone just started in the last month?

    deann-r replied 3 years, 12 months ago 5 Members · 4 Replies
  • 4 Replies
  • alyssa-silva

    Member
    April 21, 2020 at 5:55 pm

    Hi Jim. My Spinraza dose for this month has been postponed indefinitely. I know one of our forum members, Dennis Turner, is getting his loading doses and just went last week. Hopefully he sees this.

  • mike-huddleston

    Member
    April 21, 2020 at 6:12 pm

    I’m getting treatments at an offsite outpatient facility at Hopkins.  I was just contacted for my next maintenance dose, scheduled for May 20th.   This will be exactly 16 weeks from my previous maintenance dose at the end of January. Also received orders for pre-treatment labs.  In speaking with others being treated through Hopkins, I’m not aware of any delays.  One person just had her 4th loading dose a few weeks ago.

  • dennis-turner

    Member
    April 22, 2020 at 5:49 am

    Yup, i am still getting mine,and so far right on time. My next dose is my final loading dose and is the first week in May.
    Fingers crossed!

  • deann-r

    Member
    April 22, 2020 at 8:46 am

    So far my clinic is considering it essential, so I’m scheduled to get it next week. I’ve been on it 2 1/2 years now. They said I could delay it a month if I have concerns, but honestly I think the situation will be worse in our area by then.

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