Forum Replies Created

  • chelsea-chandanais

    Member
    June 2, 2021 at 9:37 pm in reply to: Rash?

    I had a rash that was mostly on the top of my left foot and very itchy. Benadryl did not help and anti-itch lotions only took the edge off for a short time. I let my PAL know so that she could report it and also sent my neurologist a message, but I am allergic/sensitive to just about everything, so, while they both agreed that there was the possibility that it wasn’t Evrysdi causing it, there was a chance that it was. After a week or 2 with the rash, I had a previously scheduled appointment with my PCP and mentioned it. She said that it definitely looked like a reaction to something, but she didn’t know what. She put me on a steroid cream for 2 weeks and that took care of it.

  • chelsea-chandanais

    Member
    May 21, 2020 at 3:12 pm in reply to: Problems Breathing With a Face Mask

    In addition to SMA, I have severe asthma and I can’t handle a mask either. I had to wear one once before all this started when I was at the doctor for a particularly bad case of bronchitis several years ago. It was way too hard to breathe, but I thought maybe it was just because I was sick and my asthma was flaring more. So, I ordered a mask and put it on before I left my apartment to go to cancer and infusion center for my monthly infusion of asthma medication. I had to take it off before I even got out the door because it was too hard to breathe. When I got to the infusion center, I was told that EVERYONE was required to wear a mask in the waiting room no matter what, so one of the receptionists tied one on me so loosely that it barely stayed on my face. When the nurse took me back and took my vitals, my blood pressure was 180s/109, heart rate was ~155 (not too much higher than my normal of 120s-130s), and my O2 was down to 92%. My O2 almost never goes below 98% and I’ve been in the ICU during severe asthma exacerbation and threatened with intubation with my O2 at 100%, so the O2 was the most concerning to me. After I took the mask off, she took my vitals again using a different blood pressure cuff and my blood pressure went down although it was still a little high, my heart rate went down to 140, and my O2 came back up to 96% almost immediately. I am really hoping I don’t have to wear one when I go back next week. I didn’t wear a mask when I went to my appointment with my allergist last week and although there were signs all over saying that they were required and I was the only one without one, no one asked me to put one on…probably because I have scared just about every single staff member there with a severe asthma exacerbation several times, including their brand new PA the very first time I saw her last year.

  • chelsea-chandanais

    Member
    May 14, 2020 at 5:46 pm in reply to: Liquid Albuterol and Energy

    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.

  • If Risdiplam is approved, I plan to switch. I have gotten spinal headaches after every Spinraza injection and the last two required blood patches. Before my last injection, the radiologist said that if I still got a spinal headache despite him trying an atraumatic needle, he would try not removing any CSF next time. Even if I don’t get a spinal headache with my next injection in a few weeks, I can’t continue to deal with the pain of the actual injections every four months (lidocaine has no effect on me and morphine and versed don’t help much) if I have another option that is pain-free.

  • chelsea-chandanais

    Member
    January 9, 2020 at 11:37 am in reply to: I’m Getting a New Wheelchair!

    I am starting the process to get my first wheelchair and I am a little nervous. I have done some research and I am hoping that I will be able to get the new Quantum Stretto with iLevel.