Lamictal HLH death

I am on Lamictal for Anxiety/panic disorder. Just found out someone died recently from HLH caused by Lamictal. Now there are warning labels apparently on Lamictal but my doctor never told me about HLH. They only told me about the rash.

I'm on 50mg/day. I'm also on 15mg Lexapro and Klonopin as-needed. I tried once reducing Lamictal to 25mg/day but started having some issues with anxiety/panic attacks. Had multiple anxiety attacks grocery shopping one day. So my psych bumped me up to 50mg/day again with 15mg Lexapro.

I'd like to get off Lamictal, but not sure why last time it caused weird anxiety panic feelings, since I'm on such a small dose. But even on 50mg/day, it makes me feel a little cloudy. I'm going to ask my psych about coming off Lamictal again.

Since lamotrigine first became available in 1994, five confirmed and three suspected cases of HLH associated with its use have been reported. All of these cases occurred within 24 days of starting treatment and required hospitalization. One death was reported; in the other cases, improvement occurred after discontinuation of lamotrigine and treatment of HLH. Because initial signs and symptoms of HLH are nonspecific, the condition can be confused with Drug Reaction with Eosinophilia and Systemic Symptoms (DRESS), another potentially fatal, multiorgan, immune-related adverse reaction associated with lamotrigine use.1,6

Patients being treated successfully with lamotrigine should continue taking it. Clinicians should monitor patients taking lamotrigine for signs and symptoms of HLH, especially during the first few weeks after starting the drug.

If you've been on it for over a month you're fine. I've been on it for years. No rash no HLH. All these cases including the death happened within the first month of treatment. Also furthermore; HLH is fast and hard hitting no matter the trigger so you'd know if you had it. It's an unrelenting sickness.

-- I'm a pharmacist. as well as a patient on lamictal

Sorry, what's HLH?

And, not to be a flea, but perhaps a trigger warning would be appropriate for this post? Just sayin'.

Your psych bumped you up when you requested to go down?

Starting lamictal was hard for me as I read all the potential side effects first and was convinced my skin would melt off.

The truth is that ALL psychmeds have serious potential side effects, up to and including death. However the rates of serious effects are extremely low. Think of it this way, some people have fatal allergic reactions to strawberries. Would you stop eating them because you could develop late onset allergies or would you eat them knowing that the likelyhood of that is very small.

Some people don't tolerate certain meds, same as anything else in the world. If it was an epidemic, it would be pulled from the market. Here the benefits far outweigh the small risk for a very small percentage of people.

To add my own experience, I take all the medications you do and more to manage my mental health issues. I take 200mg lamictal, 40mg cipralex daily and klonopin as needed. I tolerate this combo very well, with zero side effects.

It was a difficult decision to be medicated. I weighed the pros and cons. It came down to quality of life. I accept the rare risk of serious side effects knowing I feel so much better on my meds. I would suggest you weigh your own personal pros and cons, with your doctor, to make the best choice for yourself.