Epilepsy Talk

Anti-epilepsy drugs and osteoporosis — it’s not just a woman’s disease | August 31, 2022

A research team consisting of epilepsy specialists and epidemiologists (persons who study the causes and control of diseases) reports on a study that answered an important but simple question:

Do anti-seizure drugs cause reductions in bone density?

Why ask this question?

Most doctors and patients agree that controlling seizures is very important — possibly the most important consideration — but other issues, such as long term side-effects of a medication, may affect quality of life.

If a drug reduces bone density, bones will become more fragile, and eventually this could result in fractures that may have a major effect on health and quality of life.

The main result of the study was whether men and women taking AEDs were more likely to have reduced bone density than those who were not taking this group of medications.

(Bone density is determined by a balance of bone re-absorption  and bone formation.)

In particular, Dilantin, was associated with significant bone loss.

And interestingly, Dilantin is the most prescribed AED by general physicians in the U.S. but less so among epilepsy doctors, because of its side-effects.

But Dilantin isn’t the only culprit.  Men and women who took other anti-seizure drugs regularly — mostly Phenobarbital, Mysoline, Tegretol, or Carbatrol are at risk.

However, the rate of bone loss was almost two times greater per year for those who took Dilantin.

This severe bone density loss can lead to Osteoporosis (brittle bone disease) and Osteomalacia (softening of the bones) Importantly, regular users of anti-seizure drugs have an estimated 29% increase in hip fractures over 5 years.

One of the reasons for the lower bone density is that these drugs interfere with the absorption or metabolism of Calcium and Vitamin D, both considered natural bone strengtheners.

So any person taking anti-seizure drugs  —  whether male or female — should get at least 1,200 MG of Calcium per day and at least 1,200 IU of Vitamin D a day.

This includes young children who are also highly vulnerable.

Also to be considered is 500 MG of Magnesium to help absorb the Calcium and Vitamin D.  Plus, Vitamin K plays a role by helping calcium bind to bone tissue and reduce incidence of fractures.

However, it’s best to get your Vitamin K from leafy, green vegetables. If your diet is deficient, 2 MG is recommended as a starting dose.

( If you want to increase the amount, see your doctor first, because Vitamin K is not recommended for those on blood thinners or by pregnant or nursing mothers.)

Obviously, doctors should inform patients that Osteoporosis and Osteomalacia are possible side-effects of taking some AEDs. They should also consider what preventative measures can be taken. 

But whether your doctor tells you or not, at age 50, everyone should get a baseline bone density (DEXA) scan.  If the results are normal, then follow-ups are recommended every three to five years.

At this point, the safety of prescription drug therapy for bone loss is in limbo. 

The Food and Drug Administration is conducting a safety review of the following bone-building drugs: Fosamax, Boniva and Actonel (also known as known as bisphosphonates) to see if they increase the risk of fractures in the bone — just below the hip-joint — in patients who’ve been on these drugs for several years.

(Fosamax has also been associated with a rare but severe bone disease called Osteonecrosis of the jaw. Some dentists won’t even treat patients on Fosamax!)

But you can play it safe and get all the benefits without the risks.

Because there are healthy supplements available out there to provide the right combination of nutrients you need to promote healthy bones.  (One-stop shopping?)

The easiest one to find is “Bone Up” by Jarrow. 

And personally, I’d rather go the vitamin route than play with the fire of prescription drugs.  After all, we take enough meds as it is!

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Resources:

https://theros.org.uk/information-and-support/osteoporosis/causes/anti-epileptic-medications/

http://www.epilepsy.org.uk/campaigns/surveys/osteoporosis

http://en.wikipedia.org/wiki/Osteoporosis#Clinical_decision_rule

http://online.wsj.com/article/SB100014240527487039768045751141

https://www.epilepsysociety.org.uk/osteoporosis-and-epilepsy

https://journals.lww.com/co-endocrinology/Abstract/2017/12000/Epilepsy_and_osteoporosis_risk.4.aspx

https://mnepilepsy.org/patient-information/bone-health-and-epilepsy-are-your-bones-brittle/

https://www.epilepsy.com/learn/challenges-epilepsy/bone-health

https://www.tandfonline.com/doi/abs/10.1080/14740338.2019.1625887?journalCode=ieds20

Posted in Epilepsy, Medication Issues
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8 Comments »

  1. Reblogged this on Disablities & Mental Health Issues.

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    Comment by Kenneth — August 31, 2022 @ 9:53 AM

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  2. As someone who took phenobarbital and later mysoline as a child, this is interesting news and worth noting to make sure I eat more calcium rich food.

    Liked by 1 person

    Comment by Donald McKenzie — August 31, 2022 @ 10:16 AM

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  3. I’ve had epilepsy since I was 3 months old and I’m 52. I’ve been on So many different AED’s and I’ve had dexa scans. I’m also on a lot of vitamins. I’m surprised the doctors especially my epileptologist didnt say anything about Bone Up as a preventive treatment.

    Liked by 1 person

    Comment by Lisa Herzberg — August 31, 2022 @ 3:15 PM

    Reply

    • They’re probably just interested in the BIG Pharma “solutions”.

      A natural supplement wouldn’t show up on their radar.

      Like

      Comment by Phylis Feiner Johnson — August 31, 2022 @ 3:31 PM

      Reply

  4. Drinking Ensure if your Doctor or you give the thumbs up.
    I have been drinking that since I lived at home with my mum before…
    Pure Protein – chocolate was our choice. My doctor still likes me drinking Ensure.
    Power fruits Strawberries, Raspberries, Blueberries, Cherries anti-Oxidents.
    Good for eating from the tree or bush if you were like block that I grew up in where we grew most of our fruit and vegetables.

    Even after I graduated from high school and was diagnosed with Epilepsy I had 6 Epileptic Seizures living at home with my mum and fur baby sister!!

    Then tragedy happened and I was so still feel that I bullied out of my home.

    Since then I’ve had and experienced more drama than a year of the most dramatic, violent crimes against humanity or me…
    Because “I am a Girl!”
    My family was never around
    Until I was here (the city) I was a candidate for Cardiopulmonary.
    Here constantly “just finished another experiment!”
    Since 2018, I was yelled at by 2 blond haired females for “ruining their experiment and project!”
    I had no idea who they were. Why they chose me to yell at because that was the first time in the part of this city. Never been there again. Never seen them again thankfully!!

    There I’ve heard again that I was forced into this city.

    Like

    Comment by Tabitha — August 31, 2022 @ 6:08 PM

    Reply

    • I forgot Folic Acid was recommended by Epilepsy Australia around 2005 especially for all women living with Epilepsy.
      Yet my doctor did a “test” and prescribed me a month of prenatal vitamins a few years ago to see how it adjusted with my AEMs it was the same I was getting the same vitamin K, folate, D, Lutium, Magnesium and Magnese as I was supposed to be in the vitamins my doctor And my Favorite pharmacists were helping me with, so it helped me bewary of my vitamins for myself in the future.
      Bolthouse soy drinks, or fruit smoothies, in every (almost every) grocery store and Walmart…

      Your best off to ask your doctor that you have a good relationship between.
      People can give you a HELL of “I did this or I can do that…”
      If YOU don’t know what is good for YOUR own body, mind and soul don’t fall in love with a slaughterhouse ask for help!

      I had been minding my business in my apartment talking to people who were in my life and of course my fur baby and because of that ease dropping tenants set up rumors, lies, and “if you see this person wearing this do what she does and tell me what she’s buying, where’s she’s going to spend the money and eat and who’s she’s talking to and why?!

      Very true that because of my Epileptic seizures I left trails of my blood all around my apartment!
      It was a “joke!” To them!

      Because they were stoned and drunk! Because of my Epileptic seizures they assumed that I was a prime target for bullying as an adult.
      I was told to my face by a stranger after a seizure “you’re drunk!”
      That was to my face and I murmured as I walked away “you’re old and ignorant!”
      Then after I was forced to this city of stereotypes I was excused for being drunk since 2018 to the last time I was in hospital for Epileptic seizures!
      “It’s just standard questions. I don’t care if you have been!”

      The hospitals in this city wonder why I flip out when they continue to ask those questions repeatedly!
      It’s like the bet I heard long ago…
      “I bet $1000,00 that she is on drugs! I bet that much that she’ll start those, and drinking and whoring herself!!!!”
      I was living in an apartment when those bets started!!
      It’s 2022 they won’t cough up the 🤑🤑 to the me as I am their betting pony!!

      Thing that is strange is I can’t play games on my iPad that are free that have always been free because of their own gambling addictions!!

      To my knowledge they have never been in my apartment or where I am now other than to steal!

      Like

      Comment by Tabitha — September 7, 2022 @ 11:20 AM

      Reply

  5. There’s another effect of valproate, my sister’s neck was getting so painful she had it examined and found that it was from a whip lash injury she had years before but valproate had masked the pain so she didn’t know there was a serious injury she should have had treated at the time, it had developed so far she had to have a disc removed which caused more pain

    Liked by 1 person

    Comment by Gail Barry — September 1, 2022 @ 2:56 AM

    Reply

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    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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