[xRavenx]

My mother asked me what meds I am taking, because she was wondering if my brother would do well on some of the same meds that I am taking. He's been leaning on her a lot, and she is taking him to the Psychiatrist.

Anyway, when I mentioned my Lamictal, my mom researched it. She called me and said "You know the medication that you're taking can burn your skin off, and you wouldn't survive it. It can happen at any time, especially since you are on a high dose."

It immediately sent me into a tailspin. I pictured this and went into a panic attack. I am on 400 mg Lamictal and have been for years. I was not thinking about the rash, because I thought mostly only people get it when they first stat taking the medication, and it is not likely to happen to people who have been on it for a while.

It really messed up my way of thinking. I have already been struggling with a fear of death, since I've had a lot of deaths happen to people I know lately.
I'm not sure how to deal with this.... I now keep getting images in my head of being burned and dying. Lamictal is one of the only things that has helped in years, although I do get scared I'm on such a high dose.

Am I blowing this out of proportion? Should I listen to my mom? I am so anxious now.

[wiretwister]

been on 400 to 300 for years ... never had a problem ... rest your fears ... it is a very safe med ... and if it helps ....my advice is let your pdoc know of your concerns but I would not be worried at all ... Tigger .

ps: I am not a DR and do not play one on tv....

[xRavenx]

Originally Posted by wiretwister

been on 400 to 300 for years ... never had a problem ... rest your fears ... it is a very safe med ... and if it helps ....my advice is let your pdoc know of your concerns but I would not be worried at all ... Tigger .

ps: I am not a DR and do not play one on tv....

Thank you, wiretwister. This is good to hear, and I will follow up with my pdoc at our next visit. When someone says something extreme (and I think it was the way my mom said it!), it's hard to get those thoughts out of my head. At least that's the way it is with my personality and anxiety problems. The thoughts are still there. I don't want to be in a state of panic, but I'm trying my best to work through this.

[Wild Coyote]

It can be tough to work through this.

I am on my second trial of Lamictal, still just increasing doses.
My first trial, several years ago, did not go well. I'd had a severe rash/crusting of my scalp, which the dermatologist had thought was caused by Lamictal.

I have decided to try it again, cautiously. I have been treatment-resistant. Lamictal helps so many people, I am hoping I can tolerate it this time and am also hoping I will find it helpful.

For me, the potential bad from Lamictal does not outweigh the potential good.

While I do understand your mom's concerns for you, I think she probably does not have access to more balanced information. If all I had was the medical info with the SJS warning, I might think the med was not worth a trial, or two.

You are hearing this from someone whose aunt had a severe SJS reaction to a very different med.

I hope your anxiety calms down right away.


WC

[xRavenx]

Originally Posted by Wild Coyote

It can be tough to work through this.

I am on my second trial of Lamictal, still just increasing doses.
My first trial, several years ago, did not go well. I'd had a severe rash/crusting of my scalp, which the dermatologist had thought was caused by Lamictal.

I have decided to try it again, cautiously. I have been treatment-resistant. Lamictal helps so many people, I am hoping I can tolerate it this time and am also hoping I will find it helpful.

For me, the potential bad from Lamictal does not outweigh the potential good.

While I do understand your mom's concerns for you, I think she probably does not have access to more balanced information. If all I had was the medical info with the SJS warning, I might think the med was not worth a trial, or two.

You are hearing this from someone whose aunt had a severe SJS reaction to a very different med.

I hope your anxiety calms down right away.


WC

Thank you, WC. I hope you tolerate Lamictal much better this time around too, and it sounds like your pdoc is steering you in the right direction as far as still being cautious, while keeping in mind all the potential benefits. So sorry to hear you had a bad reaction, and that your aunt did to a different medicine as well. Why do so many meds that are helpful carry so many risks? It's no fair!!

I guess since I have not had a problem with it after so many years of being on it, things should be fine.... although there's always that chance on my mind. When the imagination gets going, fears feel so real, like I'm picturing my death! My mom has bad medical anxiety and tends to jump to worse-case-scenario (I guess that's who I inherited anxiety from), so I think I should stick to trusting my doctors.

[Wild Coyote]

Originally Posted by xRavenx

Thank you, WC. I hope you tolerate Lamictal much better this time around too, and it sounds like your pdoc is steering you in the right direction as far as still being cautious, while keeping in mind all the potential benefits. So sorry to hear you had a bad reaction, and that your aunt did to a different medicine as well. Why do so many meds that are helpful carry so many risks? It's no fair!!

I guess since I have not had a problem with it after so many years of being on it, things should be fine.... although there's always that chance on my mind. When the imagination gets going, fears feel so real, like I'm picturing my death! My mom has bad medical anxiety and tends to jump to worse-case-scenario (I guess that's who I inherited anxiety from), so I think I should stick to trusting my doctors.

Please know I feel your concerns are very legitimate. I did not mean to insinuate otherwise. It pays to have a watchful eye. It can just become too anxiety-provoking sometimes.

If this trial works out, I will likely always keep an eye out.

From Identifying the incidence of rash, Stevens-Johnson syndrome and toxic
epidermal necrolysis in patients taking lamotrigine: a systematic review of 122
randomized controlled trials :

"Of a total of 4,364 papers regarding lamotrigine, 122 studies met our inclusion and exclusion criteria. In total, 18,698 patients were included with 1,570 (8.3%) of patients experiencing an adverse dermatologic reaction. The incidence of Stevens-Johnson syndrome/toxic epidermal necrolysis was 0.04%."

As stated above, some people may have dermatological reactions, but a much much smaller percentage of those are actually SJS. Nevertheless, most psychiatrists take the cautious road if/when any rash or other skin reaction shows.

From Are the Odds Ever in Your Favor? Car Crashes Versus Other Fatalities | News | Cars.com :

"In 2013, the individual American driver's odds of dying as a result of an injury sustained in an automobile crash (which include pedestrians, bicyclists and motorcyclists involved in car crashes) come out to about 1 in 77 — making it one of the highest-probability causes of death tracked by the CDC."

Getting SJS from lamotrigine: +/- 0.4% chance
vs.
Dying in a car-related accident: +/- 1.3% chance

Based on above, people are three times more likely to die because of a car than to get SJS. Note that SJS, when suspected, can usually be stopped by stopping the cause (i.e. lamotrigine) quickly and getting treated. It's important to always report rashes expeditiously.

[~Christina]

I have been in it for 7-8 years and doing fine and it helps me a lot I think.

SJS always is a chance albeit very very very low on most any med not just Psych stuff , Lamictal is actually a anti seizure medication just used off label for psych.

I started on Triliptal a couple years ago and day 5 or 6 my gums started bleeding and my lip split in a 2 places so I quit it ASAP , my Pdoc said we will just watch it as there is no actual treatment other than IV’s for hydration.

I was fine and symptom free in 2 days.

Try not to do catastrophe thinking

[xRavenx]

Originally Posted by BirdDancer

From Identifying the incidence of rash, Stevens-Johnson syndrome and toxic
epidermal necrolysis in patients taking lamotrigine: a systematic review of 122
randomized controlled trials :

"Of a total of 4,364 papers regarding lamotrigine, 122 studies met our inclusion and exclusion criteria. In total, 18,698 patients were included with 1,570 (8.3%) of patients experiencing an adverse dermatologic reaction. The incidence of Stevens-Johnson syndrome/toxic epidermal necrolysis was 0.04%."

As stated above, some people may have dermatological reactions, but a much much smaller percentage of those are actually SJS. Nevertheless, most psychiatrists take the cautious road if/when any rash or other skin reaction shows.

From Are the Odds Ever in Your Favor? Car Crashes Versus Other Fatalities | News | Cars.com :

"In 2013, the individual American driver's odds of dying as a result of an injury sustained in an automobile crash (which include pedestrians, bicyclists and motorcyclists involved in car crashes) come out to about 1 in 77 — making it one of the highest-probability causes of death tracked by the CDC."

Getting SJS from lamotrigine: +/- 0.4% chance
vs.
Dying in a car-related accident: +/- 1.3% chance

Based on above, people are three times more likely to die because of a car than to get SJS. Note that SJS, when suspected, can usually be stopped by stopping the cause (i.e. lamotrigine) quickly and getting treated. It's important to always report rashes expeditiously.

Thanks so much for all this information. At least there are warning signs that can be identified first to get the help needed before it turns into something more serious, which is very informative.

[xRavenx]

Originally Posted by ~Christina

I have been in it for 7-8 years and doing fine and it helps me a lot I think.

SJS always is a chance albeit very very very low on most any med not just Psych stuff , Lamictal is actually a anti seizure medication just used off label for psych.

I started on Triliptal a couple years ago and day 5 or 6 my gums started bleeding and my lip split in a 2 places so I quit it ASAP , my Pdoc said we will just watch it as there is no actual treatment other than IV’s for hydration.

I was fine and symptom free in 2 days.

Try not to do catastrophe thinking

Thanks.
I did just read something that to a lesser extent, Seroquel can cause it as well, which I am also taking. Since so far my skin has been okay though, I know I really shouldn't catastrophizing!