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lamictal...mouth sores...real GREAT. now what...

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i have a sore throat again. this time around i looked down there with a flashlight. oh man...there are these sores in my throat and they are so gross looking. called my pRN and she and i have an appt tomorrow at 11:30am. she had told me in the last appt to take it w/ a grain of salt all this i hear about lamictal side effects. funny cuz i KNOW it was the lamictal making my eyes sore when i began it. and i KNOW its the lamictal giving me these mouth ulcers. damnit.

so she said unless it starts spreading to some rash on my skin she will see me tomorrow. thing is...i am NURSING. this concerns me so much after reading about this med and others' experiences with it as well as SJS. i am so worried for not only myself but my baby boy...

i want to not take this anymore. what else can i take that doesn't make me fat or tired. shit.

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Lamictal is pretty well known to users for often messing with any skin condidtions you have or creating some new ones. allergies, acne, creeping jungle rot you picked up in Borneo... oh, never mind the last. ;)

Your mouth and gut are just slightly different types of skin that is continuously connected to the outside of you, eh? So some mouth sores arent' a shock.

Try to work thru the lamictal side effects with a bit of patience and wry humor.

The FDA studies list SJS occurence with Lamictal as 1 in 1200 users. This scares the piss out of psychiatrists.

The German national medical registry that tracks ALL users in the country lists the occurence as 1 in 5000 users. This is a lot less scary, but still worth attention.

SJS is an immunological response to drugs (not well understood) that tends to be a rapid reaction, like hours or a few days that develops into nasty open sores and is often fatal untreated.

Key signs to watch for include: fever, sores on palms/foot soles, body rashes, mouth/lip sores. Rapid progression or any threat to the head/airway should mean immediate travel to the ER/A&E. Advise the attending physcian you are a pych patient taking Lamictal and suspect SJS. It isn't predictable, has no specific cure, and is treated by withdrawing the offending drug and using massive amounts of steroids.

The FDA recommends immediate withdrawal of Lamictal at the appearance of questionable skin rash followed by appropriate treatment. That is why it's important to have your doc aware of any rash/sore. Many/most pdocs will be cautious and stop Lamictal. However, as noted Lamictal can give you acne or too so unfortunately many patients end up losing a potential useful med.

Regarding Lamictal and nursing, that is a decision between you, your pediatrician and psychiatrist.

The manufacturer suggest that Lamictal is contraindicated after an incident. However over the last few years some pdocs uncertain about a rash, will allow weeks or a few monhts washout of Lamictal, then restart at the lowest dosage, and very slowly titrate at minimal steps, with the idea of avoiding any skin reactions by allowing the body to adjust more slowly.

There are some very nasty SJS photos at the SJS Foundation, but I'm not gonna link them.

hope your mouth clears up ok.

Best, a.m.

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thanks for your reply. i'll update you guys after i see nursey poo in the morning...

i am already prone to things like mono/epstein barr virus, herpes...sooo...this is no surprise, after looking this up online. i am obviously prone to this sort of virus. (i don't have oral herpes, i have genital...but thank GOD it is no big deal and i don't suffer much if at all from it...i got lucky.)

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I have no idea if this will be helpful...but are you using toothpaste with sodium lauryl sulfate? Evidence on whether or not it causes mouth sores is limited..but it is kind of drying and might irritate your mouth further. Biotene mouthwash and toothpaste doesn't have sodium lauryl sulfate. Pricey, but easy on the mouth.

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ok...well...my pRN thinks its just a virus of some sort...and not to worry too much. she thinks she's gonna need to hand-hold with me somewhat...each new side effect or symptom in my life i freak a bit...i worry! but i think it is not needless worry...i know much about these meds and i'm not ignorant. IMHO, the lamictal brought on the sores in the back of my throat. but maybe i've never looked in my throat when it has been sore in the past...maybe this is more common than we know and those of us on these meds paranoid about sores, etc. look and if we see somethin' we jump!

yet she did agree with me that certain meds seem to bring this kind of stuff on easier...so maybe she does know its probably the meds just encouraging nasty things like mouth sores...it may be something that passes...or that i will have to live with.

i got some jason sea salt peppermint toothpaste that is minus the sodium lauryl sulfate. i also got some traditional medicinal throat pastilles or whatever they call their lozenges...they taste sooo icky towards the end but i think it helped me a little w/ the throat pain. yowch.

i'm going to continue on the lamictal. the pRN said she has seen amazing things happen w/ the lamictal. & that she's never had to take anyone off of it unless they really had something bad going on from it. but that has been few and far between so she says lets keep going.

tomorrow i go up to 50 mg. yikes. i'm scared. what is in store for me now...lamictal is like a box of chocolates...you never know what you will get.

thank you for your support, all!

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the more i ponder this, i don't think my pRN saw my sores...she told me to stick my tongue out and she looked in there but it was not under a bright light, she did not shine a light in there to see well enough.

the only way i can see the sores is to lay my tongue down low in my mouth...and shine a flashlight in there.

to me, my personal dx is oral herpes. cuz the sores (since i have discovered they are sores) hurt, now they itch...and they have (or had...i haven't looked today) a yellowish color to them at last peek...and i was moody as hell as well and as of yesterday and today under my jaw towards my neck/throat my lymph node is swollen and in pain. i think its hsv 1. i have known i've had hsv 2 (genital herpes) since '92 and thank god it has not been a problem for me...phew. but now i'm wondering if this is hsv 1. and how long have i had this and not been aware of sores (i was never looking for 'sores' before taking lamictal...which now i'm PARANOID about any sores/rash existing on my body). i have had itchy throat and swollen lymph glands ever since i can remember, as a child i'd wake itching my throat making an awful noise (my mom hates it) to try and "scratch" it...i do have allergies to dust/dust mites and dander...but now i'm thinking this isn't even lamictal or allergy related...the sores look too much like hsv1.

does anyone know if lamictal encourages the hsv to come out? i know it encourages all sorts of oral ulcerations to appear...so i'm wondering if they can be herpes virus related.

pRN didn't think it was lamictal related as i have mucus. hmmm. i dunno. all i know is this sure looks like hsv1 to me...thankfully it isn't on my lips or outside my mouth. and thankfully i don't make out w/ anyone.........ewww. i'm grossed out. makes me not want to ever be that intimate with anyone...oral sex, ewww. no thanks. gross.

this is all very interesting. wonder if i can take valtrex with lamictal. probably although may create some side effects...hmmm. i'll email my pRN...ask her what she thinks.

thanks, all.

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u think i'm obsessing, truly? hmmmmmmmmm. i don't know...maybe i am...?! i think i'm just...concerned. this is new. or maybe it isn't... lol ok i'll go see someone else about it...i'll try w/ a GP then maybe get a referrel...to whomever i'd need to see for this...i think a derm but not sure either...

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Not that I mean to tell you to ignore something important, but you are are really over-obsessing about this. Its only been four days since you posted. Is that even enough time to begin to heal? And no, Lamictal does not bring on viral infections.

Your only problem with the ulcers is that you can see them apparently. You note that you have had wicked sore throats since childhood and that you have a sore throat with swollen glands.

Drink plenty of water, gargle with warm salt water. Do all the normal things. Viruses cause sore throats and colds and such which is common. If you develop a fever or swollen glands on your neck or armpits those could indicate a spreading infection.

For mouth ulcers Medline says to consider seeing a doctor after 3 weeks of non healing. http://www.nlm.nih.gov/MEDLINEPLUS/ency/article/001448.htm

Hope you feel better, a.m. Try to not worry yourself sicker. ;)

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hey there,

a little tip for mouth sores....at least it works wonders for Canker sores and my friend who was on Chemotherapy and had bad mouth sores got huge relief from it:

. APPLE CIDER VINEGAR. The good kind you get in health food stores (live enzymes or something). Putting it straight on the sores works the best. I take a little bit in my mouth and swoosh it around, then spit it out. Stings a little but I've had canker sores disappear OVERNIGHT with that!

If you have a flu or infection of some sort the Apple cider vinegar is good for that too, so no worries about it interfering if the mouth sores are a flu thing. Taking it with hot water and honey has rescued my voice during bad flues enough to be able to sing in concerts and musicals. Quite magical, really.

Taking LOTS of Lacto-bacillus Acidophilus during genital Herpes break-outs is helpful. The enteric coated kind that dissolves in the intestines, not the stomach. (health food store). Also, just ordinary Tinactin for cold sores works on genital herpes. must be caught EARLY, before the blisters have a chance to spread.

Hope you feel better soon......

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why don't you go see someone other than a psych nurse?

I agree. I can see why you're freaking out (all the warnings about watching particularly for rash in/around mouth), and seeing a specialist or at least a gp might help put your mind at ease. In fact, I'm a bit surprised that the psych nurse is the one monitoring you for rash - even my pdoc says she's not qualified to do that, and she's an MD, not a RN. She told me to ask my gp if she's experienced in watching for rash on Lamictal, and if not, to find a dermatologist.

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If the goal is to rule out erythema multiforme major/SJS/TEN, then it's a dermatologist's problem.

The referral to a dermatologist would be greatly sped up by going through an FP/GP who would screen appropriately.

EMM/SJS/TEN are each clusters of symptoms and are not just a rash. A GP (MD, ANP, or PA) should know what to look for and when to refer; for that matter, your psychiatric provider should know the red flags and when to refer, if she has prescribing privileges. As she's not referring, I'm guessing the sentinel symptoms aren't there.

If you're wildly concerned, MM, go to your GP for screening. S/he can culture any lesions for HSV, or help manage aphthous ulcers, or refer appropriately.

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