Blog 93: Valproate – Don’t we deserve better?

An email landed in my inbox late last week, announcing a briefing from the MHRA concerning the regulatory measures for the safe use of valproate. I sat up sharply and paid attention, the valproate advocacy work had been slightly quiet of late (or I’d been a bit side-tracked by studies!) but this was the first contact I had for a while.  

WHAT DID WE LEARN
I tuned in Monday Morning, waiting with bated breath, there was a lot to take in but the key take aways are:

• After an initial decline in the prescribing of Valproate, it now appears to have tapered off, meaning the guidelines have not been followed consistently.

• The new guidance is that no one under the age of 55 should be initiated on valproate unless TWO specialists independently consider and document that there is no other effective or tolerated treatment.

• Further to that, existing patients should be switched to another treatment unless TWO specialists independently consider and document that there is no other effective or tolerated treatment or the risks do not apply.

• There have been concerns publicly expressed for the first time about the effects of Valproate on men and the third generation. (Although they don’t form part of the MHRA statement).

• No action is currently needed from patients.

• Patients not to stop taking Valproate unless under medical supervision.

 
My Thoughts
I spent most of the meeting with one overriding feeling – don’t we deserve better than this? A lot of information had been made public, a further move to stop the use in under 55’s was announced, yet in the next breath we are told no action was needed from patients. I felt my frustration flare. Here we are AGAIN telling those on Valproate that it is not safe, but in the next breath telling those same patients to sit tight. I fully appreciate that there is a need for transparency around Valproate especially against the previous cover up but to issue news such as this for men and third generation and to tell those with epilepsy to do nothing. It all felt a bit too familiar, a lot of information and very little action. My biggest fear is that with anything Valproate related we see the big headlines, we see the fear it induces because of the risks associated with it, but that creates a bigger risk. What then happens to those whose knee jerk reaction is then to just stop taking the drug? We have *seen* this happens, seizures increase the risk of SUDEP, suddenly stopping medication increases that risk of seizures. My stomach once again sunk.

My next thought was the new news of the restrictions for under 55s seemed like it was leaning towards a ban, something the MHRA have denied, stating they are more strenuous measures. My first concern like many others is that epilepsy services are stretched at best anyway, where are we finding the two specialists who will review the care of anyone on or potentially needing to try Sodium Valproate?

I felt frustration for the victims of Valproate who were lied to and are still yet to see the recommendations in the Cumberlege report being implemented, they continue to be let down.
I also felt a frustration once again for those whom Valproate is their lifeline. They talked about it being for those whom there is no other option, and that got me thinking. Yes, I was taken off of Valproate before I fell pregnant, and do I credit it being the best decision my epilepsy nurse ever made for me? Absolutely! However, I have been playing the medication roulette ever since, Noah is now 7 and I have tried at least 4 other drugs. One I had a reaction to and ended up in A&E, on an immediate withdrawal that threatened my health. My battles with Keppra are long documented, it controlled my seizures but almost broke me as a person – a price that wasn’t worth paying. Then we finally settle on the combination of Lamotrigine and Pregabalin that I take now. Medication that still leaves me tired, and various other side effects. However, NONE of those that I have tried since have worked in the way Valproate has for me, for me it was the ONLY drug that has given me stable seizure control. I have long documented what Valproate allowed me to do, to finish my degree when my seizures returned, to travel (photos below), none of which would have been possible.  

SO if you take anything from this please please don’t just stop your medication, reach out to your own medical teams, if you need to talk the Epilepsy charities have helplines and resources and as always the epilepsy community online is a strong source of comfort and support. In the interim whilst we await official guidance on what is to come next for those on Valproate know there is a wealth of support out there, but once again it leaves me wondering;
Don’t we deserve better than this?
 
Read the MHRA statement here: Update on MHRA review into safe use of valproate - GOV.UK (www.gov.uk)

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