Epilepsy Talk

Anti-Epilepsy Drugs and Osteoporosis – It’s Not Just a Women’s Disease | April 17, 2010

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…

Resources:

http://www.neurology.org/cgi/content/full/62/11/E24

http://www.ncbi.nlm.nih.gov/pubmed/15123010

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/SB10001424052748703976804575114181349999398.html

 


53 Comments »

  1. I have both osteoporosis and osteomalacia. I am taking Calcium Citrate with Vitamin D. My neurologist, when he put me on Keppra, told me that I have to take Vitamin B Complex every day.

    I had a bone density test. Now I have to wait for the results.

    I am on Lamictal, mysoline, Neurontin, keppra and clonazepam. Do I need nutrient supplements for the other ones?

    Like

    Comment by Ruth Brown — April 17, 2010 @ 4:34 AM

    • 5 years ago i had an accident fracturing my radius &’femur while in hospital Pte Ostoperosis nurse came to see me ran some tests & informed me I have osteoporosis & putme on Alandronc Alid once A week Ask GP or specialist if worried

      Like

      Comment by Sharon — April 15, 2017 @ 11:44 AM

  2. It seems the most important supplements for AEDs are Vitamin B12(30 MCG recommended)and Vitamin E (100-200 IU recommended)

    http://health.med.umich.edu/healthcontent.cfm?xyzpdqabc=0&id=6&action=detail&AEProductID=hw_cam&AEArticleID=hn-1082009

    But check your multi vitamin first to see if these amounts are already included.

    Like

    Comment by Phylis Feiner Johnson — April 17, 2010 @ 10:16 PM

  3. Hi Phylis,

    Found your blog from the epilepsy.com forums.

    Oh wow, as if people with Epilepsy need more reason to be worried. Especially since one (if they have those types of seizures) might be prone to collapsing when the seizure strikes, which could break bones easily in a fall.

    My neuro and epileptologist never told me to take supplements (I’m on Keppra, and might need to re-go on Topamax as well as my tremor is not well controlled without it)–the only supplement I take is Evening Primrose Oil, which my gynaecologist advised me to take when I was like 18 (I’m now 24).

    I better talk to either the neuro/epileptologist soon about this!

    Like

    Comment by Snowwoman — April 20, 2010 @ 8:20 AM

    • Snowwomman, be careful with the Primrose Oil. “Over the years, a number of people have contacted Epilepsy Action to report that their seizures have increased, or returned, after taking Evening Primrose Oil (EPO). On the other hand, more recent findings suggest that EPO doesn’t pose a risk to people with epilepsy.

      You will want to decide for yourself if the possible benefits of taking EPO will outweigh any possible risks EPO may pose if you have epilepsy.”

      http://www.epilepsy.org.uk/info/epo

      Like

      Comment by Phylis Feiner Johnson — April 20, 2010 @ 6:54 PM

      • Hi Phylis,

        Hmmm. I never thought about that! Thanks for bringing it up!

        Like

        Comment by Snowwoman — April 20, 2010 @ 10:54 PM

  4. I did not know about the Vitamin E. I was told by my neurologist to take Vitamin B Complex, which I do.

    Like

    Comment by Ruth Brown — April 20, 2010 @ 2:51 PM

  5. The Canadian Journal of Neurological Science published a study showing that Vitamin E deficiency produces seizures. This powerful antioxidant protects the body from damage by free radicals and aids circulation.

    Like

    Comment by Phylis Feiner Johnson — April 20, 2010 @ 6:42 PM

  6. Hi Snowwoman, I have tremors and my neurologist put me on Mysoline for it. It works. My tremors have stopped.

    Like

    Comment by Ruth Brown — April 20, 2010 @ 8:53 PM

    • Hi Ruth,

      My docs don’t want me on Mysoline because of it’s ‘downing’ effects? Im taking concurrent Propranolol (a beta blocker) at 80mg a day, and they added Topamax when the tremor was still present.

      The reason was cos the Propranolol helped my BP/HR and the Topamax helped my Epilepsy. So the two drugs were helping 2 things.

      P.s., Sorry Phylis for using your blog to have a discussion. 😉

      Like

      Comment by Snowwoman — April 20, 2010 @ 10:53 PM

  7. Snowwoman, that’s what we’re here for!

    Like

    Comment by Phylis Feiner Johnson — April 20, 2010 @ 11:55 PM

  8. Hi Snowwoman, thank you for explaining it to me. Now, I know why you cannot have mysoline.

    Having a discussion is how we learn from each other.

    Like

    Comment by Ruth Brown — April 21, 2010 @ 4:47 AM

  9. Hi, I saw the doctor yesterday to get the results of my x-rays. I have osteo, bursitis, osteopenia and arthritis. It all in my neck, back and right side of my bones. Walking it out in the mornings help.

    Boy, my meds are really messing me up!!

    Like

    Comment by Ruth Brown — April 22, 2010 @ 11:15 PM

  10. My doctor did not recommend any exercises using weights.

    I have been doing them on my own for years, now. I have DVD’s that have exercises using weights. I have not asked my doctor because she will probably tell me that I just need to walk. She has told me that I should be in a wheelchair.

    That is not a good idea.

    Like

    Comment by Ruth Brown — April 23, 2010 @ 10:01 AM

  11. A WHEELCHAIR? Ah Ruth, she underestimates your determination!

    Like

    Comment by Phylis Feiner Johnson — April 23, 2010 @ 7:22 PM

  12. Now, she believes I must have cancer. She is sending me from specialist to specialist. I am tired of it. I had an appointment with one today and I cancelled it yesterday.

    Like

    Comment by Ruth Brown — April 23, 2010 @ 9:43 PM

    • Is this because of the results of the Dexa Scan? What about a complete blood workup and the 24-hour urine test? I think she’s rashly jumping to conclusions. That would scare me out of my skin!

      Like

      Comment by Phylis Feiner Johnson — April 23, 2010 @ 10:13 PM

  13. My neurologist did a complete blook workup. It all came out normal. He does a better job than my regular doctor does.

    She sure is jumping to conclusions. She had several other tests done and they all came out normal, including the bone density test. I do not believe that. I also had a mammogram done and it came out benign. It did last year too. She still wants me to have a biopsy.

    No Way!! Cancer is hereditary in my family. I have been told by neurologist after neurologist that I will either die of seizures (status) or cancer. It does not scare me. I think my doctor is the one who is scared!!

    Like

    Comment by Ruth Brown — May 3, 2010 @ 9:25 PM

  14. I looked up the alternatives to Fosomax. Fosomax can cause osteonecrosis (death of jaw bone tissue.) Fosomax is in a group of drugs that are bisosphonates. A person needs to awoid the whole group. The drugs to avoid are Zometa, Aredia, risedronate, Actonel and Boniva.

    The alternatives to Fosomax are progestin, Raloxifene, Evist and calcitonin.

    Thank you Phylis for the research.

    Like

    Comment by Ruth Brown — May 3, 2010 @ 10:59 PM

  15. Thanks Ruth for YOUR research. Did you see the links to alternatives that I put in post #9 in response to Tonialpha’s post?

    Like

    Comment by Phylis Feiner Johnson — May 4, 2010 @ 2:20 AM

  16. Thanks Phylis for your research. I just noticed the links today and looked up the second down from the top.

    I just put down what your link said. Fantasic information you gave us.

    Like

    Comment by Ruth Brown — May 4, 2010 @ 4:09 AM

  17. Anti-Epilepsy Drugs and Osteoporosis « Epilepsy Talk…

    I found your entry interesting do I’ve added a Trackback to it on my weblog :)…

    Like

    Trackback by Personal Care 101 — May 5, 2010 @ 9:41 PM

  18. Phylis, I put it in my favorites. What is a trackback?

    I agree, it is great.

    Like

    Comment by Ruth Brown — May 5, 2010 @ 11:02 PM

  19. A trackback is a link to the article here. Go to comment #7 and click on her link. It will take you to her website (which is HUGE!) and the article. If you click on “Read more…” you will be automatically directed to our site and the full article.

    The only down side is that in the contents column, we’re listed as Phylis Feiner Johnson, rather than epilepsy talk. However, full credit is given in the intro to the article. 🙂

    Like

    Comment by Phylis Feiner Johnson — May 5, 2010 @ 11:41 PM

  20. Thank you for the info about the trackback.

    Like

    Comment by Ruth Brown — May 6, 2010 @ 12:00 AM

  21. Since I have osteoporosis, I thought i would read the facts again.

    I am on Mysoline, which is phenobarbital. My doctor is always worried about me getting a hip fracture from a seizure. I wonder if she is worried because of my medicines.

    Well, the cancer thing is over. I had no polyps or cancer of any kind from any test. I had seizures during my colonoscopy. I am probably repeating myself from another comment I made.

    Like

    Comment by Ruth Brown — September 1, 2010 @ 3:21 AM

  22. I was not the one scared about cancer. It was my doctor. The tests are all over and they all came out normal. Both of my parents had cancer, that is why I knew that I did not have any signs of it. I think she got in trouble with the doctor who did the colonoscpocy. I had seizures throughout the procedure and he was not expecting it. My doctor told him that my seizures would not be a problem.

    My neuro cut back on my Mysoline. I am only taking 4 pills a day, now. He will probably cut back more when I see him in November. The problem is they stop my tremors and jerking.

    I am sure he is trying to find a medicine that will work for me. He is a great neuro.

    Like

    Comment by Ruth Brown — September 2, 2010 @ 4:38 AM

  23. When your doc is worried about cancer, then it’s time to panic. I’d be scared right out of my skin.

    Which doc told the colonoscopy doc that your seizures would not be a problem? Isn’t that being a little overly optomistic? Or dumb?

    Like

    Comment by Phylis Feiner Johnson — September 2, 2010 @ 5:20 AM

  24. It was my GP that told my colonoscopy doctor that I was saying that I was having seizures. She said that I would not have seizures.

    She has seen me in the ER and in the hospital because of my seizures. She not only was dumb, she was lying.

    My husband had to change doctors yesterday. She now wants to take his Driver’s License away. She is not his doctor anymore, so she cannot do it. In CA it is up to a pschyiatrist to determine whether a person can drive or not.

    She either has Alzheimers or Parkinsons. Her mind is going. That scares me.

    Like

    Comment by Ruth Brown — September 2, 2010 @ 5:41 AM

    • Time for another doc, who can set things straight.

      Why did the old doc want to take your husband’s license away? (Then you’d really be STUCK!)

      Does your husband like his new GP enough for you to transfer?

      I’d suggest you pick up all of your records and FLEE!

      Like

      Comment by Phylis Feiner Johnson — September 2, 2010 @ 6:19 AM

  25. Bob does not like his new GP but he only had 3 hours to change doctors. We had changed to this GP before. Bob is going to try to find a GP that we can get along with. Bob was in such a hurry that he forgot to change me. The change with our insurance only occurs at the end of the month.

    Bob is a good driver, she is crazy. Something is wrong with her brain.

    Like

    Comment by Ruth Brown — September 2, 2010 @ 9:55 AM

  26. It was only 3 hours, because she made the appointment in the afternoon on the last day of the month. That is when she schocked him. She figured it would be too late to change doctors.

    On the last day of each month is the latest we can change doctors, according to our insurance. I remembered that doctor that was not the greatest that Bob could change too, pronto!! He is going to find a doctor for both of us this month.

    Like

    Comment by Ruth Brown — September 3, 2010 @ 3:10 AM

  27. Hi, Phillis.
    I took Dilantin from the time I was two until I was in the third grade when I had an injury at school that prompted a ct scan. At that point my mother was told that I never actually had epilepsy and I could stop taking the Dilantin. I am now 34 and have been having problems with my neck and lower back and hunching forward at the neck for at least 8 years. I often feel a deep ache in my bones.

    Could all of this be osteoporosis brought on by the Dilantin use when I was a child?

    Like

    Comment by mengmom — June 27, 2012 @ 10:46 PM

  28. A study by a team at the University of Melbourne found that many people are not aware of the risks that taking antiepileptic drugs can have and that fractures, falls and osteoporosis can all be related to this type of medication. The researchers discovered that those who regularly take this form of drug are four times more likely to suffer spine, collar bone or ankle fractures, as well as more prone to being diagnosed with osteoporosis during the duration of taking the drugs.

    http://www.mediplacements.com/article-801397570-fractures_and_falls_linked_to.html

    Like

    Comment by Phylis Feiner Johnson — July 1, 2012 @ 10:53 AM

  29. I have been taking seizure mediations for about 25 years. I now have severe osteoporosis. In 2012 I fell from a squatting position and sustained a intertrochanteric,subtrochanteric fracture of my hip. For years the doctors missed the seizure problem now I think they are minimizing the impact of the fracture. All I want is a handicapped sticker so when I am having pain I won’t have to park so far away. Most of my doctors treat me like I am very healthy. I think is they had to live with brittle bones and seizures they would have more understanding of how it impacts a persons life.

    Like

    Comment by Cynthia Rye — June 28, 2013 @ 9:39 AM

  30. FIRST they missed the SEIZURE problem and then they “forgot” to warn you about the osteo dangers?

    These guys are dopes. Dump them.

    But first get your handicapped sticker. (It’d real easy. You get a script and then send it — I think — to the Department of Motor Vehicles.)

    Just don’t put epilepsy on the script. (You could lose your licence.)

    Have them put bone breakage, osteo, handicapped, whatever.

    Then, perhaps, you might want to get a second opinion on your condition. Or change docs.

    Below is a compilation by website forum members who have had positive personal experiences with docs over the years.

    2013 Comprehensive List of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors

    https://epilepsytalk.com/2013/01/02/2013-comprehensive-list-of-good-neurologistsepileptologistsneurosurgeonsand-pediatric-doctors/

    Good luck…

    Like

    Comment by Phylis Feiner Johnson — June 28, 2013 @ 10:28 AM

  31. It may be no coincidence that these drugs that alleviate epileptic symptoms also lower bone density. The extra calcium released from the bones raises blood calcium levels which then lower neuron excitability.

    Like

    Comment by Greg Marlow — October 24, 2014 @ 5:42 AM

  32. Here’s a great mnemonic for remembering the effects of elevated calcium levels (hypercalcaemia). “Stones, Bones, Groans, Thrones and Psychiatric Overtones”!!!???

    (Well, it sounds impressive!) 🙂

    Like

    Comment by Phylis Feiner Johnson — October 24, 2014 @ 8:34 AM

  33. […] is the worst for bone loss, but Pheno's on the list. Check out https://epilepsytalk.com/2010/04/17/a…-osteoporosis/ Your neurologist should have been recommending a calcium supplement all […]

    Like

    Pingback by Phenobarbital and Bone Density - Epilepsy Forum — March 15, 2016 @ 9:47 AM

  34. I’m 24 years old and my endocrinologist suspects I have osteoporosis. After my experience with Dilantin and other AED, I can safely say Dilantin has caused the most complications although maybe it’s doing something. My bones may be fragile for multiple reasons but the Dilantin has definitely made things worse. That and the fact that you can’t eat calcium rich food at the same time as Dilantin (or else there’s a negative interaction). Getting those bone checkups is vital in my opinion. And before you reach for dilantin, please try something else!

    Like

    Comment by valerievwang — July 17, 2016 @ 4:59 AM

  35. Well Valerie, my luck wasn’t much better.

    Although I was only on Dilantin for a few years, it gave me galloping gum rot, I lost all my thick, long hair, and at one point, I went into a coma.

    Are you taking anything for your osteo yet? (Other than exercise?)

    Are you still on Dilantin or have you changed to something else? If so, is it working for you?

    I’ve been on Lamictal (and Klonopin for anxiety) for years and it’s worked terrifically for me.

    But as you know, we’re all so different, one person’s pick is another’s poison!

    Like

    Comment by Phylis Feiner Johnson — July 17, 2016 @ 10:05 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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