SMA News Forums Forums Treatments and Research Spinraza (nusinersen) Getting Enough Vitamin D

  • Getting Enough Vitamin D

    Posted by kevin-schaefer on August 30, 2018 at 12:00 pm

    I just did lab work this week for my next Spinraza injection, and the only level my care team said was low was my vitamin D intake. Apparently it is a new thing that a lot of people’s vitamin D levels are low. My doctor prescribed me a pill that I’ll start taking along with my daily multivitamin.

    It’s no big deal, but I was just curious if anyone else has heard this. I’m not that big on big health trends like “avoid this,” “new study says milk will kill you,” etc. I’m fine taking an extra pill, but I was just curious to see if anyone else that’s receiving Spinraza has been told that their vitamin D is low.

    kevin-schaefer replied 5 years, 9 months ago 5 Members · 8 Replies
  • 8 Replies
  • michael-morale

    Member
    August 30, 2018 at 2:32 pm

    Nobody ever told me about taking vitamin D. When they do my blood work, they’re just making sure that all of my red blood cells and white blood cell counts are good along with some other tests that I may not know about. They’ve never mentioned vitamin D levels to me so I’m either okay, or it’s something that my particular doctor is not testing for.

    • kevin-schaefer

      Member
      August 30, 2018 at 2:47 pm

      Yeah it didn’t come up until this time. Like I said though it seems to be a new mainstream study. But yeah just thought it was interesting.

  • deann-r

    Member
    August 30, 2018 at 3:28 pm

    Apparently low vitamin D is common in us SMAers. That’s what the dietician just told me when she checked some levels. Mine is at 30.6 and it’s supposed to be above 30 so I might be taking a supplement too.  The one thing I’m concerned about is kidney stones. I recall reading somewhere that if your vit d isn’t absorbed it can lead to stones.  No idea of the validity, but I’ve had them before and they’re no picnic.

  • michael-morale

    Member
    August 30, 2018 at 3:38 pm

    Deann brings up an interesting point. I have battled kidney stones all of my life, and the majority of them have come back as calcium deposits. These calcium deposits can be linked to vitamin D, so it may be important for you to talk to your doctor about taking a vitamin D supplement. Kidney stones are the male version of birth and you want to avoid this if at all possible. It amazes me how much a tiny little stone can cause so much grief, but take it from someone with first-hand experience, they are no fun.

  • mike-huddleston

    Member
    August 30, 2018 at 4:58 pm

    Michael, you live in Texas, so perhaps you get enough naturally in the sun?  🙂

    Mine was low for the first time in regular blood work for my annual non SMA physical maybe 4 or 5 years ago.  I take an OTC 2000 IU supplement daily and it’s been fine ever since.

    Kevin, re: “new study says milk will kill you”, first of all, very funny.  Secondly, you forgot to mention, “Sponsored by Soda Drinkers Association of America!”

    • kevin-schaefer

      Member
      August 31, 2018 at 11:10 am

      Interesting. Yeah I just started taking the pill for it. I do that in the mornings with my multivitamin.

      And lol. I just had two sodas before noon today, and I’m sure I’ll have a study written about people like me next week.

  • ryan-berhar-2

    Member
    August 30, 2018 at 5:54 pm

    A few years ago, my doctor said I was low on vitamin D, too. I was prescribed vitamin D pills. The problem was that because my swallow is weak, I couldn’t really swallow the pills. It felt like it was lodged in my throat for a few hours, and on top of that, it made me feel weak and kinda sick for some reason. So I only took one pill, and haven’t done anything else for the deficiency since. Hopefully I’m ok lol.

    • kevin-schaefer

      Member
      August 31, 2018 at 11:12 am

      Do you mainly do liquid medicines when you’re sick then? I’ve always preferred pills, but I know swallowing is a struggle for many people with SMA. I’ve just been fortunate to not have issues with chewing or swallowing.

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