Anyone take Oxcarbazepine (trileptal)?

Hi, I am starting a tiny dose (1ml per day) of oxcarbazepine today and titrating slowly to twice per day, I just wondered if anyone takes this and if they have any of the not too nice side effects this is supposed to have. I have renal failure so this is possibly my last hope for a drug that can help my pain and stiffness (tried all the others already!). I’ve got everything crossed! Thanks, lilbill x

I find that a good chat with your local pharmacist in the room they all have set aside for private consultations is an excellent way of finding out meds related stuff.

Cant remember if you are the person who reacts badly to most things,but when they are faced with what you currently take,past reactions to things and your ongoing health issues they can usually offer good advice,and may idenify that some things are possibly side effects not symptoms.

On many occasions in my working life our pharmacist has come up with better options for us to discuss with the gp as they know far more about whats out there and contraindications,and are usually quite happy to write/phone the gp if required.

Whatever happens I hope it works for you and as its a med I’m not familiar with Im off to

All the best


Thanks Pip! I took this last night and seem ok today, apart from possibly more tired (could be the weather though!). I find that I am in the middle of doctors with differing opinions on drugs at the moment and what to try for the best! The pain specialist at our local hospice suggested this one but yesterday on a visit to my nephrologist he suggested something else! Thanks for the suggestions. Lilbill x

I dont wish to pry and feel free to ignore this but is the hospice part because you live there or have respite?

I only ask as another person on this forum was given an end of life med to help with symptoms when she was only there for respite, I can only assume that the doc there had felt it appropriate as she was at a hospice…it was an excellent drug for her symptoms but not as a long term medication.


My ms nurse works with this pain consultant at the hospice regularly for her “awkward” patients as she feels this doctor knows lots about helping people who have other medical conditions as well as ms and therefore cannot tolerate the usual pain meds. Hope this makes sense! Lilbill x


I know this thread was done a long time ago, 7 months or more. I hope this news is relevant. Lilbil, has the drug oxcarbazepine done anything for you? Might be worth talking to the team who run the Barts and London blog.

Barts and Royal London hope to trial this drup for SPMS. It does involve lumbar punctures which are not a lot of fun but are essential to get results more quickly and more effectively. Go to this page Multiple Sclerosis Research: Name that neuroprotective trial.

I don’t really understand what is does, why and the hoped for outcome. Looks positive for people with SPMS.