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This topic has 6 replies, 4 voices, and was last updated 6 months, 1 week ago by Alyssa Silva.

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    • #23437
      Alyssa Silva
      Keymaster

      Hey! Does anyone take Albuterol Sulfate (liquid albuterol) for energy?

      Since starting Spinraza, I try to avoid taking Albuterol unless absolutely necessary because pairing the two together sends my nervous system into overdrive. Arguably, it gives me too much energy that my body can’t keep up.

      That being said, towards the end of my Spinraza cycle— when my body is feeling physically depleted— I take Albuterol for that little boost of energy. It actually helps tremendously in my opinion, and I was wondering if you had similar experiences.

      Do you get the jitters? Are those feelings exasperated by Spinraza? Do you take Albuterol not just as a bronchodilator but for energy as well?

      I’m just genuinely curious if my symptoms are unique to me or an SMA thing.

    • #23446
      Jennifer Perkins
      Participant

      I have always been curious about this.  I asked my doctor about it and he said there was really no study done about Albuterol giving people more stamina/energy.  He always said if I was curious, he would not subscribe it for me.

      How are others getting it?

    • #23469
      Alyssa Silva
      Keymaster

      Hi Jennifer. I spoke with my neurologist who then prescribed it. He was familiarized with it though. Do you have a regular Albuterol inhaler? Sometimes a puff of that gives me a boost as well.

    • #23471
      DeAnn R
      Keymaster

      My neurologist didn’t seem keen on it.  If I pressed him I think he’d let me try it, but I have heart rate issues to begin with, so figured I don’t need to add to those issues.

    • #23475
      Alyssa Silva
      Keymaster

      Yeah I wouldn’t recommend it if you have heart rate issues as it causes a spike in your heart rate to begin with. Do you take Albuterol (inhaler or neb) when you’re sick?

    • #23546
      Chelsea Chandanais
      Participant

      I take Albuterol Sulfate tablets rather than liquid Albuterol for stamina. I started it in November and haven’t noticed any more tremors than I have always had. I have severe asthma and use 2 inhalers daily plus a Xopenex rescue inhaler and 3 different nebulized medications daily: Pulmicort, DuoNeb, and Xopenex (I was switched from Albuterol to Xopenex last May because it isn’t supposed to raise your heart rate as much). As a result of all these inhalers and nebulizer, I have a constant tremor but have gotten so used to it that I don’t notice it anymore. I never noticed an energy boost after using my nebulizer when I was on nebulized Albuterol. Before prescribing me the Albuterol, my neurologist talked to my Pulomonologist to make sure that he was okay with it and then put me on a low dose – the same dose children were on in the study.

      As of yesterday, I am 5 weeks overdue for Spinraza, but I did not start noticing the ”Spinraza Slump” until a couple weeks ago and even now, I am nowhere near the point I was before my last injection. I usually start having increased weakness and fatigue about halfway between doses. I contribute this to the Albuterol Sulfate because nothing else has changed since my last Spinraza injection.

    • #23563
      Alyssa Silva
      Keymaster

      Hey Chelsea. So interesting that you’re saying this. I typically start feeling weak 11 weeks into my cycle. Perhaps taking the Albuterol Sulfate BEFORE I start feeling weak will combat this. Happy to hear it helps you as well.

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