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    • #22955
      DeAnn R

      I have to admit, COVID-19 has me on edge. Despite my reservations I made my next Spinraza injection appointment for the end of April. Actually I was somewhat surprised they were still scheduling them. When I talked with the nurse she said they were considering it an essential procedure. If I want to I can postpone it for a month. At this point I don’t know if that would make a difference. Have your injections been on schedule?

      In my state the coronavirus cases have been on the rise. My fear is that by the time the injection date comes we’ll be at the height of the epidemic in our area. Of course if the mitigation efforts are successful it could push that date out. Therefore postponing wouldn’t really do much good either. I really don’t want to skip it altogether, so I’m stuck between a rock & a hard place. Does anyone know where that saying comes from? I don’t know.

      Knock on wood (not sure where that saying comes from either), I’ve been as healthy as I’ve ever been. In part I credit Spinraza. Because of that I’ve decided to go ahead with the scheduled appointment. Every five minutes I’m changing my mind, but I have a whole month to evaluate the risks of exposure to the virus versus the benefits of continuing treatment. Feel free to weigh in!

    • #22977

      I have felt the same way about my daughter’s treatment!  She was scheduled for last week and I kept wishing her doctor would just tell me exactly what to do.  She’s doing the SRK-015 trial and had that scheduled last week as well so we decided to go ahead with that one and postpone the Spinraza.  Like you said, it’s hard when we don’t know when it will be “safe” to reschedule.

    • #22979
      Lupa F

      Luckily I had my last dose on March 4, about a week before everything started shutting down, so I don’t have to go again until early July. Even if things aren’t much better by then, as long as they’re still doing them, I’ll go again. I’m much more worried about going back to how I was before I started Spinraza than I am of Covid. I have my treatments at a giant hospital in Chicago, and I’ve always been worried about picking up the flu there so I’m extra cautious about not touching anything I don’t need to and washing my hands a lot whenever I go.

    • #22980
      Alyssa Silva

      I’m due for Spinraza at the end of April, too. I honestly don’t know what to do. As of last week, the children’s hospital I get Spinraza at only had 10 cases of covid which isn’t horrible. But I guess I’m more worried about coming in contact with a bunch of nurses and doctors who may be carrying the virus and not know. That being said, I NEED Spinraza to function. Last year, I was two weeks late for one of my doses and my body took a huge hit. I know the hospital is still scheduling doses so I’ll probably reach out to them first thing tomorrow morning.

    • #22981
      Dennis Turner

      I had my 2nd loading dose 2 weeks agoo and am scheduled for another this Thursday.
      The last went well, although it felt like a bit of a warzone as I went through different checkpoints to get to the surgical suite.
      I admit that i am thinking about canceling for this next. Over 200 caregivers at Massachusetts General Hospital have tested positive. I guess i will need to have a conversation with my doctor.

    • #23021
      Jim Schneider

      I was supposed to start with my first dose early this month in St Louis.  I am also taking the anti-clotting drug Plavix that I will have to come off of a few days before hand.  My problem is no one is returning my calls so I have no idea what is going on!  I have been waiting over 6 months to get started and now a pandemic maybe somebody’s trying to tell me something.

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