Trigeminal Neuralgia and stephen johnson syndrome

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Diagnosed with Trigeminal neuralgia April 2015. Started on carbamazipine which had great effect, However on the fifth week of treatment developed a skin rash and blisters in my mouth. Spent 6 days in hospital with SJS. Never heard of it before! Not allowed to take carbamazipine ever again, Pain free until November 2015 when TN returned with avengance, Only able to take a drug called baclofen until I see neurologist in March. Has anyone else had the same drug reaction and if so what medication are you taking now?

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4 Replies

  • Posted

    Hi I was initially put on carbamezapine also didn't agree with me and was then put on oxcarbamezapine which is so much better together with lamotrigine. Had the glycerol injection 3 years ago would not recommend it as left me quite a few after affects especially my right ear which is still not right. Next step is MVD which I will have later this year after I have retired, as want to be drug free. Hope this helps fellow sufferers -a very horrible affliction.
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  • Posted

    Hi,

    I have nursed several patients with Stevens-Johnson Syndrome and it is considered to be life threatening in many cases. It's extremely rare and can vary in severity. Many patients are nursed in ITU/ICU in the early stages. You need to be aware that once you've had such a reaction to medication that it can recur with the same medication - hence the need to avoid it at all costs - and also that there are other drugs which can trigger it. Ask a pharmacist for a list of drugs which you should avoid. You could also google it or check on this website ( Patient.info).

    Good luck.

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  • Posted

    Hi Wendy,

    I feel sorry for you joining the pain club wish you well, i am withTN since 2009 medication tegretol which is same as the one you on, september last year 6 years later l developed a skin rush mainly on my face and my arms since I've stopped using it, and now i am on PREGABALIN medication no rush since then, regarding the return of pain with a vengeance after a peaceful time that last a month or two usually i don't take any medication during that time and then from no where strikes again and yes with a vengeance ,from my experience stopping the medication it's a no no you reduce but do not stop, wish you a long period of time free of pain.

    Regads

    Lyes

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  • Posted

    I never got sis thank goodness, have you tried Gabapentine or lamotridgine.

    ask you Dr about them.

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