This topic contains 22 replies, has 6 voices, and was last updated by  DeAnn R 5 months, 1 week ago.

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  • #11210
     Kevin Schaefer 
    Keymaster

    Hello all. I wanted to address other SMA adults who are receiving Spinraza. I know there are a lot of articles and discussions out there about kids who receive this treatment, but I’d like to hear from other adults.

    I’m 24 and started my Spinraza treatments in November 2017. Thus I’ve completed my loading doses, and my fifth dose is scheduled for May. Since starting I haven’t noticed any major changes in my physical strength, but I have experienced a general boost in energy. This is pretty significant for me, and I’d love to hear stories from other users here. Also feel free to ask questions here if you’re still trying to acquire the treatment.

  • #11213
     Pooja Arora 
    Participant

    I am SMA Type 3 or Type 4 sufferer.

    I am looking for treatments. presently I  do all my chores myself.

    • #11224
       Kevin Schaefer 
      Keymaster

      Thanks for joining the discussion Pooja!

      Yes, just to echo what DeAnn said above, Spinraza is a great treatment which I started receiving toward the end of 2017. I’m also happy to answer any questions you have about it. Welcome to this page.

    • #11254
       Pooja Arora 
      Participant

      Kevin, what improvement you feel.

      I mean if you could tell in details that what actions/ movements which you were facing difficulties earlier and is improved after Spinraza treatment.

      • #11256
         Kevin Schaefer 
        Keymaster

        Hi Pooja. In regards to your question about what improvements I’ve seen since starting the treatment, I’d say the biggest is an increase in my energy levels. I don’t feel nearly as tired at the end of the day as I used to, even when I’m out all day.

        Another thing my friends and family have noticed is that my speech has improved. Because I’m not running out of breath, my speech isn’t slured like it used to be. I haven’t seen any major changes related to my arm strength or physical abilities, but these other changes have certainly helped. Thanks for asking! Feel free to let me know if you have any other questions.

  • #11214
     DeAnn R 
    Keymaster

    Great to hear from you Pooja Arora!  Currently Spinraza is the only FDA approved treatment for SMA.  Although other treatments are in trials they have not yet been FDA approved.  Spinraza has been approved for all ages and types (with rare exclusions) of SMA, however access really depends on what country you live and what insurance you have.  Some are putting age and type restrictions on who can receive treatment.  From my experience in adults improvements with Spinraza are a bit slower coming than what children are seeing.  However, since SMA is progressive, slowing or stopping progression is a big deal.  That’s what Spinraza is aiming to do.  If you have further questions please ask!

  • #11253
     Pooja Arora 
    Participant

    Hi I am from India, and adult with Type 3 SMA.

    Please let me know if I can also go for Spinraza clinical trial.

  • #11257
     DeAnn R 
    Keymaster

    Pooja, currently there are no ongoing trials for Spinraza as it is already approved.  Your access to it really depends on the healthcare system in your country.  Unfortunately many countries are limiting access to those who are type 1 infants.  I would recommend contacting your doctor to start the discussion.  In adults improvements have been slower, but still show promising results.

    Personally I have only seen minor improvements in arm function.  Progression has seemed to stop though.  It’s difficult knowing there’s a treatment out there you haven’t been able to access, but continue holding on to hope.

    Thanks for reaching out.  Please don’t hesitate to ask more questions.

  • #11401
     Dennis Turner 
    Participant

    I am also following this topic.

    I was diagnosed with SMA3  in 1975 and was able to walk much of the time until  about 5 years ago. I am now 59 years old.

    My Dr. is talking with me regarding spinraza.

    Maybe/hopefully I will get treatments once approved by both him and my insurance.

    • #11402
       DeAnn R 
      Keymaster

      Dennis, I think it’s great that you’re checking into Spinraza.  For me it’s been like hitting the pause button where SMA is concerned. Over time I think gains will come.  Have you met with a neurologist? If you were diagnosed back in the 70’s they may require an updated genetic test like I had to do. Easier to get insurance approval .

    • #11405
       Kevin Schaefer 
      Keymaster

      Thanks for commenting Dennis. And yeah echoing what DeAnn said, meeting with a neurologist would be good. My neurologist has been really helpful throughout the Spinraza process.

      Keep us updated. We’re happy to answer any questions you have.

  • #11412
     Dennis Turner 
    Participant

    I meet with my Neurologist Tuesday. Thank you all for your encouragement.

    • #11413
       DeAnn R 
      Keymaster

      Keep us updated, and best of luck on your journey. Don’t hesitate to ask any questions!

  • #11433
     Valeriy Evdokimov 
    Participant

    Unfortunately in Russia this treatment is not available((

    • #11435
       DeAnn R 
      Keymaster

      I’m hoping over time it will be more readily available around the world.

  • #11439
     DAN DAN 
    Participant

    Hi DeAnn, since your last apdate about your situation is from last month, can you tell us if you can see any improvments yet? I am a type 3 who is interested to try spinraza.

    TNX

    • #11440
       DeAnn R 
      Keymaster

      Thanks for asking Dan.  As far as obvious improvements I haven’t seen anything really significant.  Sometimes when I pick something up it seems lighter than I expect it to.  Friends have mentioned I move my “bad” arm more and sound a little louder.  Even though my pulmonary function test didn’t show improvement I feel my cough has more force to it.  So, subtle things.  My calves have been cramping a bit too.  Nothing ultra painful, but noticeable.  I take it as them waking up.

      I encourage you to look into Spinraza.  From what I’ve heard many type 3 individuals have experienced increased endurance and energy.  Someone described it like sandbags being lifted off their legs.  Seems results vary from person to person, but positive from what I’m seeing.

      Feel free to ask any questions.  My next vlog will detail the process I go through.

       

  • #11530
     Dennis Turner 
    Participant

    Update from my Neurologist.  Apparently there are no adult trials going on in the Boston area. He is currently working to start the process.

    • #11532
       DeAnn R 
      Keymaster

      Dennis, glad to hear you’ve inquired about Spinraza.  Good news, Spinraza is actually approved for adults already, so no trial necessary.  If your doc is willing, he should be able to become an administration site.  I would suggest maybe having them contact Biogen, the pharmaceutical company.  Also, here is a link to sites that are administering Spinraza http://www.curesma.org/spinraza/sites/  It helped me out when I started my journey.  Best of luck, and keep us posted!  Please ask if you have questions along the way.

  • #11572
     DAN DAN 
    Participant

    DeAnn, did you notice any increase of protein in your spine fluid and/or in your Urine?

    • #11580
       DeAnn R 
      Keymaster

      Dan, My last urine test did show the protein level had increased slightly, but nothing significant.  The doctor didn’t even mention it, I was just comparing lab results.  As far as spinal fluid, I don’t get results from that, so couldn’t tell you.  In my mind that tells me Spinraza is doing what it’s supposed to.  Fingers crossed anyway.  Thanks for asking, and don’t hesitate asking more questions!

      • This reply was modified 5 months, 1 week ago by  DeAnn R.
  • #11653
     Pooja Arora 
    Participant

    How is treatment charges are managed, as it is very very high and also not available in Inida?

    • #11661
       DeAnn R 
      Keymaster

      Pooja, in the United States most individuals need to get approval through their insurance companies. In some instances if it’s been denied the pharmaceutical company has stepped in.  In other countries where the treatment has been approved it’s really based on how their health system works.  Some have put many restrictions on who can get treatment.  I’m sorry to hear it’s not yet available to you.  Keep advocating for it, and as new treatments arise hopefully it will become more readily available. Thanks for asking and best wishes on your journey.

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