am stopping LAMICTAL after 9 days due to swollen lymph node under my ear

[fed-up]

I am soooo bummed out. I finally had gotten approval to take what appeared to be the drug with the least side effects for Bipolar II.

I waited over a month to start taking it as I had a rash on my hand and I wanted to be able to tell the difference between it and the deadly Stevens Johnson rash if that were to appear. It has been a very long month and a half.....

I am 9 days into Lamicatal-25mg a day and yesterday I was actually HUNGRY for the first time in over 6 months. I snagged the sandwich my boyfriend was eating right out of his hands...it felt good to want to eat and not just force myself to eat. I also had severe crying spells for no reason the first week. Then yesterday was a "normal" day. I had such high hopes that this would be the wonder drug for me.

Anyway this morning I woke up to what appears to be a swollen lymph node under my ear. Later in the day it started feeling painful, so I went to the free clinic this evening (thank goodness they are open on Wednesday evenings) and had it looked at. At first I was kind of given the brush off and that I was over reacting (GAD) but I asked the physicians assistant to keep reading way down the list of side effects for lymphadenopathy and sure enough she finally found the warning.

There is a very small possibility it is a non harmful cyst, but since lymphadenopathy is part of the Black Box warning and may lead to deadly organ failure, the decision was made to STOP immediately. I so hate being hypersensitive...I was told that if it doesn't go away in a few days to go to prompt care and have my blood drawn....Thank goodness for computers and the ability for me to research these potentially deadly drugs....

http://www.fda.gov/medWatch/SAFETY/1997/lamict.htm

The WARNINGS section has been revised to include the following information regarding hypersensitivity reactions:
"Hypersensivity reactions: Hypersensitivity reactions, some fatal or life-threatening, have also occurred. Some of these reactions have included clinical features of multiorgan dysfunction such as hepatic abnormalities and evidence of disseminated intravascular coagulation. It is important to note that early manifestations of hypersensitivity (e.g., fever, lymphadenopathy) may be present even though a rash is not evident. If such signs or symptoms are present, the patient should be evaluated immediately. LAMICTAL should be discontinued if an alternative etiology for the signs or symptoms cannot be established.

Prior to initation of treatment with LAMICTAL, the patient should be instructed that a rash or other signs or symptoms of hypersensitivity (e.g., fever, lymphadenopathy) may herald a serious medical event and that the patient should report any such occurrence to a physician immediately."

[fed-up]

1. this morning woke up to blisters inside my right nostril...

so I think I will head into prompt care to at least get a blood test or some reassurance or documentation or something....

http://www.stevens-johnson-syndrome-lawyer.com/lamictal.html
For too many, the warnings concerning Lamictal have come too late.

Lamictal has been linked with serious risk of Stevens-Johnson Syndrome, and potentially life-threatening conditions known as erythema multiforme and toxic epidermal necrolysis. The symptoms of these life-threatening drug reactions include rash, blisters, or red splotches on skin, persistent fever, and blisters in the mouth, eyes, ears, nose and genital area. If left untreated, these conditions can result in death.


and more

looks like I have hypersensitivity to
anticonvulsants-which is genetic

herpes connection is noted in info below footnote 8

includes lamictal if you scroll down to table 3 at link

http://www.residentandstaff.com/issues/articles/2007-03_11.asp

Issue: March 2007 • Vol 53 • No 3
Anticonvulsant Hypersensitivity Syndrome: Recognizing
the Signs and Symptoms

Marcus E.S. Mason, MD, FCCWS
Attending Physician
Internal and Geriatric Medicine
University of Miami/Jackson Memorial & Miami Veterans
Administration Hospitals
Miami, Fla
Anticonvulsant hypersensitivity syndrome is an
uncommon but potentially fatal condition that can
occur in susceptible patients taking one of the
aromatic anticonvulsants, such as phenytoin,
carbamazepine, or phenobarbital. Signs and symptoms
typically include high fever, rash, lymphadenopathy,
and hematologic abnormalities. Elevated fever and skin
rash that cannot be explained by other causes should
alert the physician to the possibility of this
syndrome in patients taking an anticonvulsant
medication. Immediate discontinuation of the offending
agent is necessary; early recognition can prevent
permanent multiorgan damage.

Anticonvulsant hypersensitivity syndrome—also known as
phenytoin pseudolymphoma syndrome—is a potentially
fatal idiosyncratic drug reaction to certain
anticonvulsant medications that break down into
intermediate metabolites, specifically arene oxides.
Responsible medications include phenytoin (Dilantin,
Phenytek), carbamazepine (Carbatrol, Epitol,
Tegretol), oxcarbazepine (Trileptal), and
phenobarbital sodium (Table 1). The cross-reactivity
of these drugs ranges from 50% to 80%.1,2

Recent research suggests there may be a genetic
component (possibly autosomal) that contributes to
susceptibility, since siblings and other first-degree
relatives of affected patients appear to be at
increased risk.

3 These individuals may have a genetic inability to
detoxify the arene oxide, because of an absence, low
concentration, or diminished activity of the enzyme
epoxide hydrolase. This would allow the antiepileptic
and its oxidized metabolites to accumulate, possibly
activating cytokines and T cells through the major
histocompatibility and other pathways.

7 This T-cell–mediated chemotoxic reaction occurs in
areas that contain cytochrome oxidase, such as the
liver, lungs, skin, and mucosa, often affected organs
that contain the CYP-450 enzyme and epoxide hydrolase.

6 One study suggested an association between a
cutaneous reaction to carbamazepine and the presence
of the HLA-B*1502 gene in certain patients.

8 Additional reports have shown a relationship between
the hypersensitivity syndrome and reactivation of
herpesvirus 6 and 7.9,10 Other factors that may
contribute to anticonvulsant hypersensitivity syndrome
are allergic hypersensitivity and a form of
graft-versus-host disease.

[DemExpat]

2. So sorry to hear about your woes with a promising drug, fed-up.

Good for you that you are on top of things with your own health by researching and reading!

I, too, am too sensitive for many pharmaceuticals I've tried in my life.

For as long as I can remain healthy and relatively happy without them, I will, and am.....

DemEx

[fed-up]

3. update-went to clinic-no signs of multi-organ failure...yet :) did have high fever last night

and subnormal temp again today

was given acyclovier for the cold sore in my nostril


I called the drug company and verbally filed an adverse report that they claim they will send to the FDA
I will also file my own consumer report with the FDA

I was taking 25mg and on the first day had a slightly clear runny nose which lasted the duration
by the 3rd or 4th day I was having crying jags for no reason, also a slight sore throat
by the 10th day I had the pea-sized swollen, painful lymph node right below my ear, subnormal temp and feeling crappy in general (but not flulike)-did NOT take meds that day-went to the clinic-they agreed STOP meds

by 11th day (yesterday) I still had subnormal temp and light headedness and herpes starting inside right nostril-went to prompt care
also had headache-they prescribed acyclovier for the herpes and any other infection that may have been present

last night had night sweats, felt slightly nauseous and dizzy


today glands under chin in front feel slightly swollen, node under ear is slightly smaller, still have subnormal temp and slightly lightheaded


did lots of reading on what organ failure symptoms are and since I am not jaundiced, nor do I have any red, swollen limbs and am peeing freely I will just wait it out


was somewhat slightly distressed to read somewhere that any damage may not show up til years down the road...

also read about Epstein Barr and lymph issues-I was EBV positive 25 years ago (almost, but not quite mono) and don't know if there is a tie-in to my hypersensitivity because of that (hard to tell as 90% of the population is EBV positive



one added note-the swelling lymph nodes ARE NOT in the "pocket PDR" that both the physician's assistant at the clinic and the person at prompt care used. I had to tell them to search online under lymphadenopathy and lamictal