SMA News Forums Forums Treatments and Research COVID-19 and SMA Spinraza During COVID

  • Spinraza During COVID

    Posted by deann-r on May 5, 2020 at 7:00 am

    Last week I had my Spinraza injection.  Going into it I wasn’t sure what to expect since virtually everything seems to be shut down at the moment.  My clinic deems Spinraza essential, so I figured I’d go for it.  Wearing my homemade mask the transportation van arrived.  The driver, not wearing a mask, strapped down my chair.  I could smell he was a smoker, so pretty sure homemade masks are next to worthless.

    Since traffic was super light, we arrived early.  We had to go in through a different door than usual and answer the COVID screening questions.  They were hesitant to let my Mom/caregiver come with me, but after a phone call they allowed it.  The elevator ride to get labs drawn probably was the most uncomfortable, but everyone stayed in their respective corners and were wearing masks.  It was weird hollering my name and birth date to the receptionist behind the plexiglas 6 ft away.  No chairs in the waiting room.  Thankfully they took us back right away.  I requested the technician that’s good at finding my blood.  She got it the first try!

    Everything else was pretty much the same.  Got the zinger down to my toe for a brief second when they got close. Otherwise virtually pain free.  Good to go for another 4 months.

    Have you been able to get your injections?  I’ve heard some places require a negative COVID test prior to injection.  Have you needed to do this?

    dennis-turner replied 3 years, 12 months ago 4 Members · 5 Replies
  • 5 Replies
  • dennis-turner

    Member
    May 5, 2020 at 7:04 am

    Get mine Thursday!
    Praying.

  • alyssa-silva

    Member
    May 5, 2020 at 9:29 am

    Currently in limbo. My body is super weak at this point as I’m 2.5 weeks overdue for my next shot. I’m scheduled to go in when the hospital reopens to the public at the end of May. However, my doctors feel I’d be safer going in now while the hospital is a ghost town versus later when they’re making up THOUSANDS of procedures. I’d arguably be more at risk then than I would be now. Waiting to hear back from the team.

  • deann-r

    Member
    May 5, 2020 at 10:57 am

    Fingers crossed for you Dennis!  Alyssa, hope they can get you in.  I’d much rather go when traffic is slow before they have to play catch up.

  • kevin-schaefer

    Member
    May 5, 2020 at 2:52 pm

    Mine is scheduled for the 20th, and I’ve been in touch with my Biogen FAM. Everything sounds good to go. Like you said, it helps that hospitals and clinics are pretty vacant right now.

    I’m still not set to start PT again until June, as my clinic’s pool is closed through the end of the month. My body misses the water.

  • dennis-turner

    Member
    May 5, 2020 at 3:00 pm

    I had a pt eval as part of an ongoing trial today, 4 hours in the clinic. My doctor said she had needed to fight with the hospital administrators to keep Spinraza as essential therapy. I am thankful for that.

Log in to reply.