Epilepsy Talk

Anti-Epilepsy Drugs and Osteoporosis – It’s Not Just a Women’s Disease | May 6, 2018

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 reabsorption  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:

http://www.webmd.com/epilepsy/news/20040608/older-epilepsy-drugs-promote-bone-loss

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/

 


21 Comments »

  1. Thank you for your wonderfully important (as always!) information Phylis. I have been trying to drink almond milk to get more calcium into my diet — even adding it into my coffee, which I normally prefer black. Supplements…I WANT to do better about taking and have tried but would really be more apt to take them if they weren’t always the size of horse pills!! Seems like the vitamins that are especially important to take — ‘C’, ‘D’, Calcium, multi….are always huge!! I was excited back when I found the calcium in the form of a chocolate chewable and believe you me, I was really good about taking it back then but….felt so guilty…if it was that tasty….how healthy was it really?? Same thing with those gummies??

    Liked by 1 person

    Comment by Ellen LaFrancis — May 6, 2018 @ 12:30 PM

  2. Dr. Russell Blaylock has a very interesting CALCIUM section in his book EXCITOTOXINS,, The Taste That Kills, where having too much can be dangerous for brain health in general. it’s also known that too much calcium is bad for heart health in making calcium deposits in the arteries. Eating fresh green leafy vegetables like Spinach & etc,,, are better to eat as is, instead of cooking them in a pot with water as you cook out the value of the food, & eating them raw is better anyway. Rabbits do not cook their foods before eating them, Do they ? I was on Dilantin for my 1st 25 out of my 1st 26 years of life. Before I was 27, I was having fragile bones as any stress on my body seemed to result in a crack or fractures somewhere, from the least forces on my body. Then a doctor told me too much Dilantin can cause bone marrow to be damaged, so then he took me off of it at age 27, after he heard I was on it for 26 years. At almost 58, my bones are as strong as they ever were, as I never been on Dilantin since 1987. My digestive system works every day too, & I have had LESS SEIZURES in my last 30 years, than in my previous 27 when in those years I had MORE PETIT MALS every week or every month & every season, even as then in the fall & winter seasons I had less seizures, as today now they are GRAND MALS that drugs like DILANTIN & others with MAGNESIUM STEARATE in them WILL cause more seizure activity along with the MSG’s & ASPARTAME’s in the drugs where very few people have LESS seizures, than more because of those things in drugs like DILANTIN, ZONEGRAN, KEPPRA, ONFI, FYCOMPA, & others which are toxic to the human brain & digestive track where the 2nd brain is very active to everything where the brain & gut nerve endings & receptors & neurotransmitters reacts quickly.

    Liked by 1 person

    Comment by C D — May 6, 2018 @ 12:51 PM

  3. interestingly enough! No wonder the Dr. kept asking if I’d had a bone density test

    Like

    Comment by Karen Frandsen — May 6, 2018 @ 4:34 PM

  4. A better way to help your bone density without ODing on synthetic calcium pills is to drink bone broth.

    Liked by 1 person

    Comment by paleobird — May 6, 2018 @ 5:51 PM

  5. You have a problem with processing protein? Seriously? What causes this problem? Without amino acids (what protein breaks down into) there can be no cellular repair or growth. How do you manage to survive without these essential building blocks of life?
    I’m not doubting your account, I’m honestly curious about your condition. Of all the foods people eat, physiologically protein is the easiest thing ever to digest for most people. Way easier than plant matter with all the cellulose that is better off in a cow’s rumen.
    Has any neurologist ever put the pieces together that this woman can’t process protein right and therefore she has epilepsy?

    Liked by 1 person

    Comment by paleobird — May 7, 2018 @ 12:27 AM

    • Actually, my protein processing problem was discovered as my seizures were staring to abate.

      It’s mammals that make me sick, so I misspoke. I can eat plenty of fish.

      As for how it was discovered, I lost 55 pounds in 6 weeks,

      So in their infinite wisdom, the doctors knew something was up.

      How and why was never discovered.

      And after 35 years of a peaceful stomach, I’m not eager to experiment or desensitize my protein intolerance.

      Besides, as I said, I CAN eat fish, which I do, every day.

      Like

      Comment by Phylis Feiner Johnson — May 7, 2018 @ 10:28 AM

  6. Interesting. I have heard of a lot of people with digestive issues with fish but who do fine with red meat but this is the first time I have heard of the opposite. At least you are still getting your protein. Thank you for sharing your personal stuff to satisfy my curiosity. 🙂

    Liked by 1 person

    Comment by paleobird — May 7, 2018 @ 4:38 PM

  7. Now I have more questions. You say your digestive problem is with mammals but you do eat fish. So what about eggs, poultry, dairy, soy protein products like tofu? Do you eat any of those? Forgive me while I “geek out” on your medical issues.

    Like

    Comment by paleobird — May 7, 2018 @ 4:45 PM

  8. I take Dilantin (it is the only and that works for me). I have had epilepsy since I was 3 (I’m 66 now ).
    In 2006 my neurologist casually mentioned to me that long term use of Dilantin can cause bone loss. So I asked,
    “What is ‘long term’”?
    “About 5 years. How long have you been on “?
    “About 30 years”.
    “Uh, I think you better get a bone scan done”.
    I did. 40% bone loss. The neurologist immediately put me on Fosamax and calcium. My bone loss reversed to to pre osteoporosis levels.
    The government in its infinite wisdom will not pay for the Fosamax since I no longer have osteoporosis. But they will pay for it again once my bones have deteriorated to osteoporosis again. Am I the only one that sounds insane to?
    I no longer have that neurologist as I moved across country. There are no neurologists in my area that are accepting new patients.

    Like

    Comment by Mark Thompson — May 9, 2018 @ 10:17 AM

  9. Keppra and many others cause osteoporosis too, therefore also leading to tooth decay. Your teeth are made of bone after all. I switched to Dirty Mouth Tooth powder from Primal Life Organics which has great ingredients to remineralize teeth. I also use it because I am allergic to Sorbitol found in most commercial toothpastes. Even Tom’s of Maine has Sorbitol and SLS in it! I haven’t seen a dentist on awhile, but made a will-call with a holistic dentist-yes there is such a thing! Holistic dentists don’t use almagam(which contain mercury and other toxic chemicals for the brain) to fix cavities. I had a Calcium Absorption test a few months ago and I had to increase my Calcium Lactate from 2- three times a day to 3- three times a day. I take Levetiracetam Oral Solution, although I was on the pills for awhile. To top it off I had years of steroids, which also contribute to Osteoporosis.

    Like

    Comment by trekkie80sgirl — May 10, 2018 @ 5:47 PM

    • Thanks for the tip. Have you considered Spry toothpaste?

      It’s natural “tooth friendly” made with Xylitol, cranberry extract and aloe.

      Basically, it improves oral health by inhibiting bacteria from adhering to teeth and gums.

      Anecdotally, the bacteria is said to slide off your gums and teeth.

      There’s Xylitol chewing gum also which we use.

      Like

      Comment by Phylis Feiner Johnson — May 10, 2018 @ 5:56 PM

      • I’ve heard of those Xylitol toothpastes, but most pastes have something in them. My mom uses XyliWhite brand. Plus the powder, since it’s made with different clays.

        Like

        Comment by trekkie80sgirl — May 10, 2018 @ 6:45 PM

  10. I’ve never heard of XyliWhite, but I presume it’s a cousin to Spry.

    Like

    Comment by Phylis Feiner Johnson — May 11, 2018 @ 7:19 AM


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    About the author

    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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