Has anybody out there ever had the Lamotrigine itch?

Posted by itchyd @itchyd, Sep 18, 2023

Has anybody out there ever had the Lamotrigine itch?

I have these occasional weird episodes where I feel like the skin on my face and arms is being gently rubbed with a very fine grit sandpaper and my ears, nose, eyelids and jawline have random sensations like fine pin pricks or ants crawling around.

When an episode is coming on, the hair on my scalp and arms stands up like it's being exposed to a static charge and I feel a faint adrenaline response like you get when you've just been threatened or received really bad news.

It's definitely not Stevens-Johnson syndrome: no rash, fever,etc.

A while back, I surfed up a Lamotrigine user forum where people had similar complaints, but I haven't been able to find it again.

My shrink thinks I'm nuts.

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@itchyd
How long have you been taking Lamotrigine? Have you discontinued it or tried Benadryl?
What did the Lamotrigine forum users recommend?
Jake

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Hi Jake,

Been on Lamo since 2009 at various dosages. Can't remember all the details over the years, but steady at 400mg/day for a long time until reduced to 200mg/day a few months ago to address itch. There seemed to be a positive response to halving the dose for a little while, but the condition's pretty much reverted to status quo. I think the perceived improvement may have been placebo effect.

I've tried Benedryl and I am prescribed Hydroxyzine, which has antihistamine effects. Neither works. This leads me to believe that it's not allergy related.

As I recall, most of the contributors to the forum reported the itch as something that occurred early in their use and eventually faded away. There was one guy who reported getting it at roughly the 9 year mark, though. Can't recall any suggestions from fellow LaMoaners for mitigating the condition.

Guess I can live with it, if need be: more of a nuisance than anything.

Have you had it?

I've recently had a spate of arrhythmia, which is more concerning. But, that's another story.

Thanks for your input.

Dave

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@itchyd, has the itch developed into a rash or hives?

The risk of getting a serious rash from Lamictal is low. But some people may develop a serious rash which needs immediate medical attention. I'm glad you've talked to your doctor about the itching.

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Hi Colleen,

I've had the "itch" off and on for months now. No rash or anything else that would signal a serious autoimmune reaction to Lamo. Just frustrated that I haven't been able to find anything to explain these strange symptoms. I guess it's possible that I've developed a food allergy.

Thanks for your input.

Dave

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@itchyd
No, I haven't taken Lamictal that I remember and never had a rash or itching from any seizure meds I've taken.
I've not heard of your symptoms happening 14 years after starting.
When you get refills are they always from the same manufacturer?
Jake

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@itchyd
Have your changed laundry detergent or any household soaps/products.
Jake

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Hi Jake,

Between the time this started back around the new year and up until recently when I changed both, I'd had the same shrink & pharmacy. I'd had them for years. As far as manufacturers go, I'm not sure that my Lamo's always been cooked at the same place. Pill characteristics (color, size, shape) have varied over the years and pharmacist has always assured me that it's the same stuff. Probably never can be 100% sure where it's coming from. I've gotten the hygeine question before. My better half runs the show regarding laundry, household toiletries, etc. and she says nothing of note has changed. Also, I don't work anymore, so it's not industrial exposures. We don't poison the lawn like our neighbors, so it's not Roundup or something similar. I don't drink/smoke, no recreational drugs.
???? Mystery ????

Thanks for your interest, Jake.

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I tried Lamictal for two weeks, got a slight rash and he immediately took me off it. Now it’s listed as one of my allergies in my records.

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@vball91

I tried Lamictal for two weeks, got a slight rash and he immediately took me off it. Now it’s listed as one of my allergies in my records.

Jump to this post

Was your doctor concerned that you might develop Stevens-Johnson syndrome?
I don't have any visible symptoms, rash or otherwise. Just this occasional mysterious itch-like condition that's accompanied by the crazy occurrence of hair on my scalp (what's left of it) and forearms standing up like it's statically charged. I relate these conditions to the medical folks and they have no answers.

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I think he was concerned about that syndrome. That wasn’t it, but any rash and see ya later.

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