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: read the 5 comments or add yours
Comments
I know I am hopelessly late in replying to this, but have only just read it! I found it most interesting and alarming. I was a volunteer for testing in the National Bio Clinic Scheme. During those tests it was found that my heel scan was showing a low score and I was advised to ask my GP for a DEXA scan. I had this and was diagnosed with quite severe osteoporosis at the age of 58.. and put on to alendronic acid and vit D and calcium. I have been on Tegretol Retard for 14 years with Topirimate added on a few years later. At no time was I ever told that one or another of them might cause me a problem other than sleepiness or a problem with my liver for which I had blood tests which have become increasingly further apart.
Jean Batey
i am 24 and have been taking tegratol retard for 11 years. i have been having problems with oesteoarthritis in my knees for the past 3 years. the drs tell me that this is due to the fact that i have mild cerebral palsy which has made one leg shorter than the other. i just happened to mention this problem with my knees to the consultant who looks after my epilepsy and asked for a bone density scan. he flinched and sent me for a blood test for vit d deficiency. this came back at 25 and it should be in excess of 100. i am worried that the problem with my knees is not down to my having one leg shorter than the other but a problem with my bone density. i am also worried that not having enough vit d may cause other long term health problems. why is it this organisation highlighted this in 2003 and still no one is routinely offering blood tests to people taking tegratol retard???? i am only 23 and feel i have put my faith in health profs and been badly let down. i am now asking myself is my epilepsy diff to control because some of the seizures i am having are down to vit d deficiency (this is a symptom of vit d deficency) and would i have been better off not taking any medication at all given that the side effects are causing damage ....
Please can you tell me is anyone doing anything about this!
Hi Maxine
I’m sorry to hear you feel let down by the health professionals and with your epilepsy medicine. Certainly your Vitamin D deficiency could be a side effect of the Tegretol. As you say, we have been alerting people to the link between some epilepsy medicines and osteoporosis for some time now. But certainly this needs to carry on.
Some people with epilepsy do ask themselves whether they would be better off dealing with possible seizures rather than dealing with the side effects of the epilepsy medicine. If you are seriously considering this, do make sure to discuss it with your neurologist first.
I really hope dealing with your vitamin D deficiency goes some way to improving your general health.
Cherry
Advice and Information Team
30yrs on phenytoin, very intermittant testing, docs decided to test me for folate deficiency 3 months after hospital admission for infected kidneys and found I had macrocytic anaemia, Dr only tested for folate [folic] I had to do the research and find the other vitamin deficiencies caused by phenytoin and then push to be tested to find I had calcium/Vit D deficiency even though I was diagnosed with osteopaenia 5yrs ago and not informed it could be phenytoin - they blamed depo nor had another bone density scan. Saw Dr about overgrowth of gums, they said see my dentist, did not mention that it was due to phenytoin toxicity of which I have other side effects - peripheral neuropathy, ataxi, nstygmus etc etc. The only side effect I was aware of was excess hair growth and when my Dr asked me if I'd like to see a neurologist I said I could live with the hair growth and happy to stay pn phenytoin as I was seizure free. When I finally got to see the neurologist they thought I was a new patient - they cannot find my records for the last 30 yrs. There are more what I class as mistakes during after pregnany - levels not tested = not enough during pregnancy and overdosing while being encouraged to breast feed. What on earth is happening with our Gp's ? Now this afternoon I discoved there is also a possibility of Vit K deficiency - when does it end ? Why are the Gp's not upto date and/or not informed and why are people with this disability being treated so badly ?
Hi TJ
It sounds like you have had to do lots of research about your epilepsy and phenytoin side-effects. It’s really difficult to know how to keep GPs up to date with all the effects of epilepsy medicines – although we do try. An example of this is the six different fact sheets we have recently written for GP’s to use with their patients with epilepsy. One of those is about planning a baby, which I’m sure would have helped your GP to help you when you were pregnant, if it had been available at that time.
I hope that your new neurologist is helping you with your epilepsy medicines. But if you would like to discuss any aspect of your treatment, please contact us again, either on the Epilepsy Helpline freephone 0808 800 5050, or by email at helpline@epilepsy.org.uk.
Kathy
Advice and Information Team