Anti-Epileptic Drugs And The Risk of Osteoporosis and Osteomalacia

How much information do patients taking anti-epileptic drugs feel they receive about the side-effects of this medication?

Epilepsy Action Membership Survey – July 2003

Summary of Findings

Studies suggest that osteoporosis (brittle bone disease) and osteomalacia (softening of the bones) are potential side-effects of certain anti-epileptic medication. This is due to the reduction in the body's vitamin D, caused by these drugs, which in turn may lead to possible loss of bone mass.

The purpose of this pilot study was to provide a snapshot of the extent to which patients felt they were sufficiently informed of the side-effects of anti-epileptic drugs (AEDs).

In particular, the research sought to determine if people taking AEDs, where osteoporosis and osteomalacia were possible side-effects of long term use (over 5 years), were given information about this condition. In addition, the study looked at what supervision, treatment and preventative measures are offered to patients most at risk of this condition.

1000 questionnaires were sent out to a random sample of Epilepsy Action's members. 241 responses (24 per cent) were received. The findings of this research were analysed in relation to two issues, firstly the long-term use of any AED, and secondly the long-term use of AEDs that have the possible side effect of osteoporosis and osteomalacia.

38 per cent of respondents had been taking AEDs for 5 years or more, of which 68 per cent were long-term users of AEDs which had the possible side effect of osteoporosis and osteomalacia.

The findings indicate that 75 per cent of people taking AEDs felt they were not informed of the side-effects of these drugs. This figure applied no matter which AEDs the respondent was taking.

Several respondents expressed their concern about this situation. Comments suggest that this situation was possibly linked to a lack of communication between patient and doctor.

The findings further indicate that only 15 per cent of respondents taking AEDs with the possible side effect of osteoporosis and osteomalacia were offered a bone density test or advised about preventative treatment.

The long term use of AEDs appears to be a risk factor for bone loss and fractures. Vitamin D deficiency is also cited as a cause of bone loss in patients who have seizures. Based on the findings a number of recommendations are made:

  • Doctors, pharmacists and health professionals should inform the patient of the possible side-effects of AEDs.

  • Patients should be made aware that osteoporosis and osteomalacia are possible side effect of taking some AEDs.

  • The level of risk of osteoporosis and osteomalacia should be discussed with individual patients.

  • Doctors should consider what preventative measures could be taken to reduce the risk of patients taking some AEDs developing osteoporosis and osteomalacia.

  • A bone density test should be considered for people prescribed AEDs that may have osteoporosis and osteomalacia as a side effect.

  • Vitamin D or Calcium supplements could be considered when taking these AEDs.

This study highlights the need for further in-depth research into the issue of side-effects and anti-epileptic drugs.

Comments

I read the above survey with interest as I have been taking AED's as long as I can remember - early 1040's- In about 1955-6 primidone came out which I have taken ever since. The addition of Diamox ultimately controlled siezures, which had caused me to be thrown out of school - but that medication - read about in an American magazine by my G P in the late 50s was discovered too late,
I have never been asked about bone density and rather take the view that I am lucky still to be around and do not like to bother the doctor as historically it seems that our malady was and still is frequently confused with others. I have experience - .! as have many.
In the last decade there was an attempt to change from what I am on , but unfortunately it did not work. I was one of those who wrote to the Dep of Health. MP etc. after being told by my doctor and others nothing could be done. The Head of Astra Zeneca got it badly wrong - They almost admitted it. Three months to change from a drug one had taken all ones life, to an UNKNOWN substitute, well.let alone the withdrawal simptoms!
Regards.
Gillian

Hi Gillian,I too was on a very strong dose of Phenobarbatone from the age of 8yrs old.I was on this medication for 22years and the side effects where dreadful trying to change to another form of medication..I was also a single parent with 2 young daughters.At the time my mother came to stay with me for a week only .I was walking into the cudbaords and falling down steps.The frustration caused more confulsions.But my eldest daughter had to take over me and my baby,Ella.Ailsa my eldest saved my life several times,from drowning in the bath,etc.Also I started a fit coming down stairs and lodged my face onto the radiator that was on full heat.She heard my moans and had to pull me off the radiator ,leaving alot of my skin still on the radiator.I had to leave my children for several weeks as I was sent to a burns unit for skin graph's(taken from my arm and put on my eye and face).I had a 50 -50 chance of my site returning.It took along time ,but to see my two beautiful girls again made it worth all the pain.I now have 3 beautiful grandchildren.We get depressed and very down and suffer alot at times(just with the damage you do from the fit).But we have to stay strong and if there is a tablet out there that can help we have to try till we find one that suites.Ailsa is 35yrs old now and lives in Jersey.But even on the phone she know's when I am ill.Tomorrow I am going to spend a week with her,my son in law and my two beautiful grandson's.I will miss my family here and grandaughter but I know I am in safe hand's.

This is very weird as 2 weeks ago i was told i am in vitamin d deficiency.

I have had Epilepsy for about 10 years and tried several different course of medication but my aeds did not work and thats why i had surgery in September 08 (Right temporal lobectomy)

I went to the NHNN in London in May 09 as my seizures have come back worse and whilst i was there i had a blood test done and 2 weeks a go i received a call from my doctor to say my vitamin d levels are low 21nmols/l and this could be the reason my seizures have come back.

I am now taking 1250 mg of calcichew carbonate tablets twice a day but it could prevent the absorption of my Phenytoin so i have to take them couple hours a part, my other 2 aeds are fine though.

I asked my doctor for a dextra scan which i have later this month as i do have a problem with my lower back and right hip but i also have osteoporosis in my family.

I had a BDS scan done last year after reading about this; the radiologist said if I was problem-free I wouldn't have to go back, but it turns out that I have to return for another in 5 years; meanwhile at the age of 44 I've developed seriously painful osteoarthritis in my lower back and left hip and need to use painkillers and a stick for walking. GP says I'm too young to have a hip replacement yet so have to put up with it :(

I'm still curious whether the Tegretol Retard I've been taking for the last 5+ years for TLE exacerbated this? I have had mild and not particularly painful osteoarthritis of the spine most of my life, but this came on very suddenly. I get my bloods done regularly to check Tegretol levels and so on, no sign of needing extra calcium, but have been prescribed folic acid from the results of the last test - not related to the Epilepsy meds.