Lamactal anyone?

[elf]

Was just diagnosed with a mood disorder for the first time. GIven a script for lamactal.

Any experiences with this?

[Peacemamalove]

I was on it a couple years ago and I broke out in a horrible itchy rash. I got off it right away.

[crazydiamond]

Yeah, the rash is the biggest thing to worry about. SJS is nothing to mess around with!

I was on lamictal for 2 weeks and in that time I felt the best I can ever remember. It totally stabilized my mood and I felt normal again. Except that it caused a heart arrhythmia in me and I had to get off of it because of it. Otherwise, I had no other side effects and I wish it was an option for me because of how well it worked.

[yogachick79]

I answered your other post as well, but just to reiterate, I love Lamictal. I'm currently titrating back up on the generic after a long break where we had two children and I nursed. Our youngest (almost 2) is finally weaned and I took my butt straight back to get on it again. It was a life saver for me, made me the most stable I've ever been, hoping that it works the same way again for me this time.

What dose are you taking/working your way up to?

[Carley]

I also take Lamictal - 400mg/day - for me it's a miracle drug. I have Bipolar I disorder, rapid cycling. I also take 100mg Seroquel.

It should be noted that the rash is quite rare - 0.08% - as are the other serious side effects. It's unusual that 2/3 posters suffered from them! Talk about odds!

I posted this in your other thread as well, but as a general FYI here is the latest data on Lamictal and pregnancy/breastfeeding:

http://pregnancyregistry.gsk.com/lamotrigine.html
http://pregnancyregistry.gsk.com/doc...spring2009.pdf

Everyone is going to come to a different conclusion, but I opt to take Lamictal while pregnant & continue while breastfeeding.

[crazydiamond]

Originally Posted by Carley

It should be noted that the rash is quite rare - 0.08% - as are the other serious side effects. It's unusual that 2/3 posters suffered from them! Talk about odds!

Well, Lamictal is notorious for causing a bunch of different kinds of rashes. It's only the ONE kind from Stevens-Johnson Syndrome that's the important one. The problem is, though, that even a good dermatologist would be hard-pressed to differentiate between any number of the benign rashes and the SJS one. So everyone is told that if you develop a rash, any rash, to stop the Lamictal.

I can't speak for the above posters specifically, but chances are that most of the people who do get a rashes from Lamictal are benign. So while the 0.08% you quoted is true of the SJS rash, there are a whole lot more people who get rashes from it in general. And since you can't easily separate it out, the number seems a lot higher.

[Carley]

Originally Posted by crazydiamond

Well, Lamictal is notorious for causing a bunch of different kinds of rashes. It's only the ONE kind from Stevens-Johnson Syndrome that's the important one. The problem is, though, that even a good dermatologist would be hard-pressed to differentiate between any number of the benign rashes and the SJS one. So everyone is told that if you develop a rash, any rash, to stop the Lamictal.

I can't speak for the above posters specifically, but chances are that most of the people who do get a rashes from Lamictal are benign. So while the 0.08% you quoted is true of the SJS rash, there are a whole lot more people who get rashes from it in general. And since you can't easily separate it out, the number seems a lot higher.

I pulled that statistic from the px sheet that indicates that number represents all rash cases, not just SJS:

"LAMICTAL® can cause serious rashes requiring hospitalization and discontinuation of treatment. The incidence of these rashes, which have included Stevens-Johnson syndrome, is approximately 0.8% (8 per 1,000) in pediatric patients (2 to 16 years of age) receiving LAMICTAL as adjunctive therapy for epilepsy and 0.3% (3 per 1,000) in adults on adjunctive therapy for epilepsy. In clinical trials of bipolar and other mood disorders, the rate of serious rash was 0.08% (0.8 per 1,000) in adult patients receiving LAMICTAL as initial monotherapy and 0.13% (1.3 per 1,000) in adult patients receiving LAMICTAL as adjunctive therapy."

Since many people discontinue the medication at first signs of a rash in general, I totally agree that even that number is highballing it. Even that highball stat is pretty darn low.

Even with that risk, OP, it's still worth trying it since the side effect is so noticable. You're not going to die from it If you get a rash, you stop the med. No big deal.

Anyway OP! Here you can find a wealth of humorous information on an aray of psychotropics. Enjoy!

http://www.crazymeds.us/

[elf]

I am so darn paranoid about SJS---a rash that leads to disfigurement (in most cases) and death in a few!!!! The thing that sucks is once you notice it coming on.....it is too late. Stopping the med doesn't really help it---sounds like you are put in the burn unit asap b/c it needs to run its course.

i know you guys mentioned that it is so rare that it is worth the risk but my thought is this: would you shoot a loaded gun at yourself if there was the same risk of disfigurement or death?

I feel selfish wanting to try this drug---like if something happens to me==my family would be screwed. we can't afford for me to be in the hospital in some burn unit for months.

i need reassurance about this rare rash.

[crazydiamond]

Originally Posted by elf

I am so darn paranoid about SJS---a rash that leads to disfigurement (in most cases) and death in a few!!!! The thing that sucks is once you notice it coming on.....it is too late. Stopping the med doesn't really help it---sounds like you are put in the burn unit asap b/c it needs to run its course.

i know you guys mentioned that it is so rare that it is worth the risk but my thought is this: would you shoot a loaded gun at yourself if there was the same risk of disfigurement or death?

I feel selfish wanting to try this drug---like if something happens to me==my family would be screwed. we can't afford for me to be in the hospital in some burn unit for months.

i need reassurance about this rare rash.

Everything I've read leads me to believe that the level of seriousness you're talking about really only happens if you don't discontinue the med right away. You're right in that there is no treatment, per se, but if you stop the med at the first sign of the rash--and I mean the very first sign--that is pretty much all that's going to happen. I know someone who actually did get SJS (not from lamictal, but that's another point: there are numerous drugs out there with SJS as a potential side effect) and she stopped right at the rash stage and that was it. No hospitalization, let alone an extended stay in the burn unit. Now, as the syndrome progresses, yes it's likely that's what may happen. In general though, as long as you're vigilant and don't blow off a rash, changes to you eyes/vision, or achy joints (all symptoms of SJS) your chances of suffering any disfigurement is really really low.

Now, I want to bring up some of the other things you may encounter by choosing another drug. IMHO, lamical is a wonder drug with very few side effects. My pdoc thinks it's the number 1 BP II drug out there. Her #2 drug is trileptal, which I was just in but had to stop do to allergic reaction. It made me dizzy, confused, and foggy. Words were always at the tip of my tongue but I could never think of them. I was so tired I had to take a 2 hr nap every afternoon. And please note, this drug is considered to be very good as far as tolerance and side effects go. The remaining drugs have more side effects including serious weight gain. Some require frequent blood testing to avoid toxicity.

Of course everyone has to make the decision for themselves. After my reaction on trileptal, I appreciate lamictal even more and really wish I could take it. The inconvenience and problems with trileptal were much more problematic than the risk of SJS. I'm a SAHM and could no longer drive due to the dizziness -- how to get my kid to/from school? The exhaustion meant DH had to take over dinner duty every night because I was passed out in the couch. I had to stop cosleeping because I didn't trust myself to wake up for my DS. And the confusion made me feel dumb and unable to fully participate in conversations. And the dizziness meant I was constantly nauseated and thus never in a good mood. Granted I was only on it a short time and side effects
are supposed to lessen with time, but I was on an incredibly small dose and it still caused a lot of stress for my family. I'm scared about what drug ill go on next because pretty much all the other cause weight gain. I'm already overweight and certainly don't need to pack on an extra 50 lbs.

I'm just so sad that lamictal didn't agree with me. I didn't have any other side effects, save for a week of mild acne. Not medicating isn't an option either snce the fall-out of my constant mood swings is tearing apart my family. There are no easy choices with bipolar and I hope you make the one that is best for you.

[painefaria]

Originally Posted by elf

i need reassurance about this rare rash.

The psychiatrist that I works with uses Lamictal, when appropriate, because of the lack of side effects. Like the other posters have noted the RASH IS RARE. Other positives are it is weight neutral which is very unusual in that group of mood stabalizers. Make sure that your Dr starts slow (following the dosing recommendation - 25 mg for 2 weeks, 50mg for 2 weeks, etc.) It may make you a little sleepy at first but that goes away.

[Mom2M]

I was also told that if you stop at the first sign of the rash it is fine. Plus it is very rare!
I did get acne for a while but it was fine. The most important thing is to increase the dose very slowly. I was given a pack that had the pills laid out for 6 weeks and which to take every day.

lamictal is one of the only drugs I can take that doesn't have serious side effects for me.
I don't take it for BP, it works great for neuropathic pain too.

Good luck with your decision. In my opinion, it is worth a try, it can make a huge difference in your quality of life and the risk is very small.

Deb

[Carley]

Originally Posted by elf

The thing that sucks is once you notice it coming on.....it is too late.

I don't believe that's the case, elf. Have you discussed your concerns with your provider? It seems nothing anyone is writing is helping you.

[elf]

THank you so much for the info everyone. It is helping me very much.

What I have read is that if you are truly starting to infectious/necrotizing process of true SJS rash, you really can't stop it. Steroids are controversial and you do have to let is run its course (albeit you do treat secondary infections that arise due to it). However, as many people have mentioned the "rash" that people often think is SJS is either an adverse effect or allergy to the medication which is not SJS.

I am just nervous b/c I tend to be that person that every rare medical thing or side effect happens to. Seriously. So this in turn has made me a little gun shy.

However, based on NUMEROUS positive posts by everyone. lamictal truely seems like a miracle drug and quite possibily is worth the risk for me.
So thank you.

I saw my internist yesterday and he suggested I start the trazadone first for a few weeks to get my sleep back on track and then start the lamictal (my pdoc prescribed both of those meds earlier this week). Makes sense, then I know what drug is causing any side effects.
ps. the trazadone didn't help last night.

[Peacemamalove]

Well, Lamictal is notorious for causing a bunch of different kinds of rashes. It's only the ONE kind from Stevens-Johnson Syndrome that's the important one. The problem is, though, that even a good dermatologist would be hard-pressed to differentiate between any number of the benign rashes and the SJS one. So everyone is told that if you develop a rash, any rash, to stop the Lamictal.

Exactly. For me it was after a couple of days of starting it. My whole body itched and it was awful!

I am so glad that it is helping you That is all the counts

[Peacemamalove]

Well, Lamictal is notorious for causing a bunch of different kinds of rashes. It's only the ONE kind from Stevens-Johnson Syndrome that's the important one. The problem is, though, that even a good dermatologist would be hard-pressed to differentiate between any number of the benign rashes and the SJS one. So everyone is told that if you develop a rash, any rash, to stop the Lamictal.

Exactly. For me it was after a couple of days of starting it. My whole body itched and it was awful!

I am so glad that it is helping you That is all the counts

[Satori]

Lamictal has also been a wonder drug for both my dd and I, I don't regret starting it at all. I actually started this thread over my fears of taking it.

[~Heyokha~]

Not to hijack...

Carley, your posts on bipolar are always so informative. There are so many myths and so much misinformation surrounding bipolar. You consistently respond to these threads with a strength and a wealth of knowledge. So many people stay silent about this medical issue but you are doing wonders speaking out and putting a 'face' to this.

Thank you.

[peachsara]

Also, as rare as the rash is, most commonly it comes on slowly enough that you can stop the meds before it gets too serious. Especially if you are slowly titrating your dosage. I've read that it's pretty rare for it (SJS) to come on fast and strong.

I've been on Lamictal for a few months now and have had no problems. I'm still cycling, but the ups and downs are not nearly as severe as they were. I am pregnant now, but my pdoc feels very comfortable with me taking it through pregnancy and bf'ing, as the benefits outweigh the risks, especially considering how much the changing hormones affect me.