Starting Lamictal, how scared should I be about SJS?
June 10, 2014 11:14 AM   Subscribe

I'm being prescribed Lamictal for a neurological condition by one doctor (a neurologist), but my primary is scaring the crap out of me about the possibility of SJS (8/1000). Should I be terrified? Has anybody had experience with this? I feel like these odds are very small, but I've had some weird reactions before to medications so, yeah, I'm scared. I wish I'd never Googled it!
posted by Raichle to Health & Fitness (20 answers total)
Response by poster: sperose, can it develop later if you forget a dose or something?
posted by Raichle at 11:34 AM on June 10, 2014

As you say, the risk is less than 1%. So it's something to be aware of but not something about which to be terrified.

Generally speaking it shows up fairly quickly. Once you've been taking the medication for several months it is unlikely to sudden show up. More unlikely I mean.
posted by Justinian at 11:40 AM on June 10, 2014 [2 favorites]

Me too. I've taken it and had no rash, although I was warned about it by my prescribing doctor. In my case, the benefit of the medication far outweighed the risk of SJS, so it wasn't something I was concerned about.
posted by donajo at 11:41 AM on June 10, 2014 [1 favorite]

Taken it for years, no problems. Occasionally missed a dose. Don't scare yourself.
posted by desjardins at 11:41 AM on June 10, 2014 [2 favorites]

I think that the risk is pretty overstated.

The risk for a "rash requiring hospitalization," (i.e. not even SJS or TEN) is quoted in adults as 0.3% (epilepsy adjunctive therapy), 0.13% (epilepsy monotherapy), 1% (with concurrent valproic acid use), 0.8% (bipolar disorder, monotherapy). Here is an interesting article that talks about how higher dosages initially used may have contributed to the bad reputation. It talks about a german study where there were 3 cases out of 18 000 exposures, which is much less than 1%. This article quantifies it as between 1 and 10 per 10,000 new users, similar to other anti-epileptics, and says most reactions occur within the first 63 days.

There's no such thing as a safe drug, just one that does more good than harm!
posted by cacofonie at 11:45 AM on June 10, 2014 [3 favorites]

Response by poster: Thank you all for the reassurance. I'd like to start it right away but worried because I'm traveling next week to California. I feel like I'm overreacting to the risk and I'll have been on 25mg for a week and I'm staying at that for a total of two weeks before the next increase. I feel like I'll always find a reason to not start it and I should just realize that less than 1% is so negligible. I think I'm more likely to die in car accident although I haven't checked the odds.
posted by Raichle at 12:03 PM on June 10, 2014

My wife had the SJS rash. She first thought it was bug bites and I circled them to see if more appeared. They did and she stopped immediately. The withdrawal was yucky but the very small SJS spots disappeared within a week with no medical intervention. Just pay attention and stop if you have any fever or rash.
posted by AlexiaSky at 12:11 PM on June 10, 2014 [2 favorites]

Ask the neurologist what s/he thinks about going to California vs. waiting until you get back.
posted by feral_goldfish at 12:16 PM on June 10, 2014 [1 favorite]

My sister also had the rash... Noticed immediately (it's weird looking) and went to urgent care and was (and is) fine. They swapped her meds, no biggie. I don't even think she'd been on it long enough for withdrawal to be an issue... A day or two? She didn't mention it as an issue anyway. We laugh about it now as one of the many ridiculous illnesses she's had.
posted by jrobin276 at 12:20 PM on June 10, 2014

I was on Lamictal for a few years. No SJS rash, and I am very prone to side effects and worry about them. The only thing now is that because I was on it, even though it was over ten years ago, every time I get a rash it gets an extra look just to make sure it isn't SJS. My PCP actually brought it up, but also mentioned that most often it will start in the mouth if it comes with another rash. I'm not sure that's true, but it made me feel better. Even if you do get SJS, it is not likely to go all the way to Death Rash, especially if you're paying attention.
posted by monopas at 12:25 PM on June 10, 2014

IANA neurologist (you should call yours or the clinic's nurse) or dermatologist, but as best I know SJS is an immune reaction to a drug. It usually shows up in the first 2 months if it's going to happen. It can be set off by adding a drug, increasing doses quickly, or (I think) a predisposing infection. I have never heard of SJS in reaction to missing a dose (unless that drug was an immune suppressor like steroids), and in fact the first thing that they would do if you had SJS is stop the likely culprit.

This is a well-known side effect, and your neurologist probably thinks that the benefit is worth the risk. It should say in the package insert that if you develop a new rash stop taking it and go to a hospital.
posted by a robot made out of meat at 12:52 PM on June 10, 2014

I had the rash, went to a doctor who told me to just stop taking it, and all was fine. Talk to your pdoc about taking it when you're going to be going away, s/he might want you to wait. Also, it showed up about 3-4 days after I started. It didn't suddenly show up when I was weeks into the medication. Just keep an eye out and if you get a rash, go in. Most of the rashes may not even related to the med, but they like to err on the safer side.
posted by Meep! Eek! at 12:52 PM on June 10, 2014

I've been on it for about four years now, and it's been just fine. Follow the titration directions exactly, though. You can miss the occasional dose (e.g., been sick and slept through the usual dose time? No problem, just take it at the next scheduled time), but don't start missing doses for days and then decide you're going to just jump right back into it.

I wouldn't sweat it too much; you're going to California, not the wild frontier.
posted by culfinglin at 1:15 PM on June 10, 2014

Just titrate slowly, you should be fine. If you develop a rash, then stop and get evaluated, but you should be fine. I took it for years, no problem.
posted by St. Alia of the Bunnies at 1:33 PM on June 10, 2014 [1 favorite]

I got the itchy thing (which went away in a few days after my dermatologist pulled me off the lamictal), but I believe my doc titrated the dose upwards too fast. I am reasonably sure if you go super slow you'll be fine.
posted by intrepid_simpleton at 3:33 PM on June 10, 2014

In 2012/2013 I was put on Lamictal via a very slow titration after ineffective alternatives. I suffered from many of the common side effects, but none were deemed too serious to discontinue the med entirely (just slow the titration even further). The more the dose crept up (to the dosage my Dr prescribed) and the longer I was on Lamictal, the worse things seemed to get (as far as my tolerating the med was concerned). My white blood cell count dropped (alarmingly low - but not dangerously so) and GI issues plagued me. Every day was filled with hot/cold sweats, uncomfortable body/brain 'zaps'/buzzes, horrible stomach cramping/digestion and a generally 'inflamed' and itchy feeling. So while my mood had stabilized, my body suffered for it. I was -always- sick while on this med.

I stopped taking the drug, per my doctors' orders, after I developed the Lamictal 'rash'. Since I knew that it was a possible side effect, I made sure it was something to regularly check for. One day as I went to shower, I discovered bands of rashes across various regions of my body (inner thighs, groin area, lower stomach, upper arm/underarm areas, sides of neck); they were red/slightly purple in color, not really raised/filled, blotchy in appearance, with some areas being speckled/dotted. They weren't painful to the touch. The photos you see of the "Lamictal Rash" are pretty spot-on.

I immediately went into the doctor, who verified the nature and severity of the rash, and who had me immediately discontinue the medication - cold turkey. The rash faded within 2 weeks - getting over the withdrawals was much tougher. There was also the return of the issues the meds had been helping to mitigate. But that said, once the drug was entirely out of my system, I felt a lot better. I'm not at 100%, as I'm still plagued by digestive issues (which I had not experienced pre-Lamictal). However, thanks to shifts in healthcare, I can now get the colonoscopy and endoscopy needed to determine what kind of damage has occurred (and what'll be needed to mitigate it).

So definitely beware. While the med is generally well-tolerated, as above examples prove, not everyone can take it. My advice? Do titration -very- slowly and, on a daily basis, make sure you check your body for rashes. Immediately speak to your doctor/nurse if you find any blemishes that seem unusual.
posted by stubbehtail at 3:47 PM on June 10, 2014 [1 favorite]

If you were going on a trip to a remote village, might be a little more worrisome, but California? They have doctors there too. I can understand concern about side effects but I don't think the trip is a concern.
posted by treehorn+bunny at 9:59 PM on June 10, 2014

Regarding SJS, titration is not preventative.

Yes, I had SJS from Lamictal, and was hospitalized for about 4 days, and out of work for a month because I couldn't really walk or type with enormously swollen body parts and other nasty symptoms. I had gone of the Lamictal after trying it for 2-3 days.

SJS is very rare (3-6 cases per million people, for ALL medications, not just Lamictal), and substantially different from developing hives or other negative responses that are resolved by stopping the drug.

I think this Mayo Clinic information should be helpful.

One of the things to consider, however, is whether you have had any allergic responses to sulfa drugs, which do have some overlap. In my case, that should have been considered prior to the doctor prescribing the Lamictal.
posted by miss tea at 3:34 AM on June 11, 2014

Another rarer side effect, but one that happened to my boyfriend while he was titrating up: aseptic meningitis. Something to be aware of, because his neuro certainly didn't warn him it was a possibility, and it took us a bit to figure out what was causing his symptoms. You can read about it here.
posted by bluloo at 8:23 AM on June 11, 2014

Response by poster: No problems and the side effects got a lot better after a few months. Thanks everybody!
posted by Raichle at 9:47 AM on October 1, 2014 [3 favorites]

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