Lamictal rash?

Hi @minajo
I had a mild skin rash with Lamictal, but nothing serious. My major problem with Lamictal was sleep, I got severe insomnia with this medication which was killing me.
Hope Lamictal works for your daughter. Among the medications AEDs I have tried (Lamictal, Tegretol, Trileptal, Gabaneurin and Vimpat), it was the one that gave me the least side effects. Every person reacts differently. What has not worked for me, might work for others.
Good luck!
Chris (Santosha)

I've been on Lamictal for three years. My understanding is that rashes from Johnson Stevens Syndrome will show up in the first three months after starting the drug, and it's pretty rare. If you notice "any" rashes during that timeframe, report them to the doctor immediately. I didn't get Johnson Stevens syndrome, but I had several rashes. They varied a lot, and were in different parts of my body. I wasn't completely rash free until this last October. I reported each new one to my doctors (PCP and Neuro) they both told me that they had nothing to do with the medication. As @santosha said, "Every person reacts differently." Side effects vary. My rashes were harmless though definitely from Lamictal. My point is that, your daughter may get rashes from the med, and it's important to report them, but it doesn't mean it's serious. Other than some brain fog, and what I call "brain glitches", I've handled the drug reasonably well, and it's been effective.
Side note: The "brain glitches" are hard to explain, and I don't know if anyone else gets them. Other than being a bit awkward when having a conversation, they don't worry me.

@minajo
Although the concerns regarding Stevens Johnson Syndrome (SJS) are valid and very serious, I hope the doctor also explained it’s extremely rare especially while taking Lamictal.
Did your doctor also explain there is a genetic test to see if your at an increased risk of developing SJS? I'd definitely recommend that test if from certain Southeast Asia.
Personally, I would not hesitate taking Lamictal but it may help if you titrate more slowly to help reduce any side effects. I figured the benefits far outweigh the risks of the many seizure meds known to possibly cause SJS that I have been on over the 57 years I've had Epilepsy, not to mention all the other types of medications known to have a relationship with SJS as I imagine you have.
Take care,
Jake

My understanding is that titrating is essential when starting, and you have to be weaned off, when and if the time comes, as well.

Thank you! My autistic daughter has never , in her 48 years, slept soundly, just naps i call them! Takes Melatonin but her epileptologist suggested Lamictal after Zonegran caused weight gain, mild kidney changes, ammonia elevated slightly.. her neurologist who handles autism, Seroquel and Buspar is against changing to Lamictal.. hard decision.. thank you

Thanks! Besides the rashes were there other symptoms we would need to watch for? My daughter is nonverbal autistic so she can't express many symptoms others can..
Are rashes mild, like small red bumps or blisters? Epileptologist suggested but her neurologist said no.. doesn't think Zonisamide responsible for 25# weight gain in 18 mo, kidney values, chloride, creatinine, gfr slightly abnormal and ammonia @41
Hard decision..

Thank you.. i didn't know about the test! I asked epileptologist about it before we change, we just did amino acid test so doubtful dr will order..
Autism and epilepsy hard to treat,, so many drugs.. input from neuro too saying to keep Zonisamide even tho weight gain , labs bit off.. saying more risk of SJS with older AED'S so... thank you !!

My Neurologist told me that Lamotrigine has less serious side effects than most other AEDs. I haven't had any issues with any of the things you mentioned, like weight gain, or blood tests in the abnormal range. I have labs done a few times each year, and everything is always normal.

My rashes have been varied with the most memorable being dark red patches on the back of my knees, small itchy red bumps on my thighs, and barely visible slightly burning blisters on my face. The worst thing about them is that they last a long time, but that's just how my body reacts to Lamotrigine. Take into consideration that I take the lowest effective dose -- 100mg, 2 x day, so I have no idea how my body would react to a higher dose.

The Mayo Clinic has an online page with the side effects listed as most common, less common, and rare. It's the most comprehensive list that I've seen. Here's the link:
https://www.mayoclinic.org/drugs-supplements/lamotrigine-oral-route/side-effects/DRG-20067449?p=1
You'll have to scroll down quite a way to find the lists.

I truly hope that you find the best treatment for your daughter. I can't imagine how challenging it is to have to make this sort of decision for her, especially since she's nonverbal. It sounds like you're asking the right questions, and taking every precaution. She's fortunate to have you looking out for her.

Hi @minajo
In those situations of hard decisions and different opinions, I believe it is always worthwhile to check for a second opinion or even a third one. In 2021, I was being prepared for a LITT surgery for my epilepsy when I decided to check for a second opinion from a neurosurgeon, who was totally against it, as this surgery would bring me a great loss of memory and would not make me free of AEDs (anti-convulsant medication). I have refractory epilepsy and AEDs did not work for me, either because I could not tolerate them or because they worsened my seizures. Checking for a second opinion was the wisest thing to do at this time I was facing a hard decision.
Before taking Lamictal, I was already having some sleep issues, but this medication has worsened my sleep much. And we know how important sleep is to control seizures. While on Lamictal I was having just naps. What helped me much was the practice of yoga nidra many times during the day, a practice which I kept since then with app practices and lessons. 30 minutes of yoga nidra can correspond to up to 3 hours of deep sleep. The app I use on my cell phone and enjoy much is called Insight Timer. See if this is possible for a person who has autism and may help your daughter.
I also truly hope you find the best treatment for your daughter. That your mind be illuminated in those moments of hard decisions.
Chris (Santosha)

Sorry @minajo, I forgot to add links with some information on the practice of yoga nidra.
https://www.dailyom.com/journal/your-brain-on-yoga-nidra-and-why-you-need-this-powerful-yoga-practice-in-your-life/?aff=910&ad=1&utm_source=google&utm_medium=ppc&utm_campaign=PerformanceMaxMeditation&acct=9358138875&gad_source=1&gclid=CjwKCAiA2pyuBhBKEiwApLaIOyABin15IjK4aMrSsiwk5K9OCJzm5pbXhjP_1dswlqWGO0exCZgOthoCp6EQAvD_BwE
https://www.biharyoga.net/yoga-nidra.php
Chris (Santosha)