• First dosis of Spinraza

    Posted by julia-ayerbe on February 5, 2021 at 10:00 am

    Hi all, yesterday I got my first dose of Spinraza. I waited three years for this treatment, and I am very glad and excited with my first injection. Anyway, since yesterday I´ve felt very tired, and I am also a little bit anxious to feel any effect from the medication. I know many of you take Spinraza for years, do you have any advice? Thank you <3

    julia-ayerbe replied 3 years, 2 months ago 4 Members · 5 Replies
  • 5 Replies
  • dennis-turner

    February 5, 2021 at 10:06 am

    You should feel better quickly.  Don’t expect Spinraza to start working immediately,  for me it was about 3 months before I started  to have minor changes.


    It is still worth waiting!

  • deann-r

    February 5, 2021 at 10:27 am

    Congratulations! I do think the process of getting the injection can be draining. It’s tough to remember back, but I think I felt the most difference after the loading doses. Even then it was subtle. Like I would pick up something and it wouldn’t seem as heavy. Or I could fight off a cold easier. Everyone is different though so results will vary. I know what you mean though, after waiting so long I’m sure you just want to notice something significant.

  • deann-r

    February 5, 2021 at 10:29 am

    Oh, also some people noticed increasing protein in their diet helped with energy levels.

  • alyssa-silva

    February 7, 2021 at 11:53 am

    I’m so happy for you Júlia! Like Dennis said, it is worth the wait. Feeling anxious is totally normal. It’ll become more routine over time and those nerves will subside. Just remember to be patient. It took me about 2 months to feel its effects, but please keep in mind that everyone’s experiences are unique, so try your best not to compare your journey to others! It’ll only cause more anxiety. This is such an amazing opportunity, I hope you receive great benefits from it. 🙂

  • julia-ayerbe

    February 8, 2021 at 1:04 pm

    Thank you all for your words, they help me a lot. Since today I no longer feel the side effects of the injection and I am very happy and peacefull to continue on this journey. 🙂

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