Discussions that mention phenytoin

Epilepsy board


Hello all,
I am a 49 year old epileptic, diagnosed at the age of 11 with petit mal seizures which, over the years progressed to grand mal. I have been controlled for over 20 years on a regime of phenytoin (600mg) and Sodium valproate (Epilim). I last had an episode in 1997 and this was controlled by increasing the Epilim dosage to 2500 daily. A low dose of clonazepam was introduced to help to control the absence seizures.
I have complained to my GP about various side effects over the last few years in particular and the approach has been to battle with the symptoms rather than consider changing the drugs. I have taken drugs to counter skin rashes and have had to adjust my lifestyle because I have not had the energy or mental capacity to continue in my old line of work.
In June 2005 I was referred to the haematology clinic with low blood counts (neutrophils, platelets and haemaglobin). A bone marrow biopsy was taken and hairy cell leukaemia (leukemia in the States) was diagnosed. This explained my illness over the last few years. I have been on a course of chemotherapy and the results look very promising. Blood levels have recovered, but not as much as expected and my haematologist is concerned that the anti epileptic drugs are suppressing recovery.
I was aware of the suppressive nature of the drugs and, against medical advice, took the radical step of reducing the phenytoin to 400mg before the leukaemia was diagnosed. I got away with it, but it was a stupid thing to do.
My research into the drugs leads me to believe that both the Sodium Valproate and Phenytoin can be as equally as bad as each other in terms of the impact on blood counts. Whilst there is no relationship that I'm aware of between the drugs and hairy cell leukaemia, I wonder if there is anyone out there that has experienced similar blood disorders?
I have an appointment to see a neurologist soon and believe that I should be weaned off Phenytoin (I have read of the wide ranging side effects, particularly if taken over several years). Sodium Valproate is a very effective drug and will be hard to replace. I wonder whether anyone out there has had to move from valproate to a more modern drug, how this was done and how effective it was? I suspect that my neurologist will recommend staying on valproate, but if I can find something that is less likely to impair blood counts I may have to take the chance.
A tall order, I know, but if anyone can help I will be very grateful.
many thanks....