Q: Hesitant to Try Lamictal
Hi Dr. Phelps,
This is a bit long. . .I did try to keep to the point!
I was diagnosed with Bipolar II about eighteen months ago. I had been
diagnosed with severe unipolar depression before that (in 1990). I
experience frequent mixed episodes, and am noticing that my mood is cycling more
frequently as I get older (I am now 33). I also have severe fibromyalgia.
I have tried antidepressants and mood stabilizers since 1992, and haven't found
anything that really helps. I started taking Trileptal about one year ago,
and felt the drug was working fabulously until 4 months ago. I am
currently taking 750mg of Trileptal in the am and 900mg in the pm ( we have been
increasing the dose since Dec). I have also had some moderate success with
Effexor XR, but am now tapering off of it, as I don't think that it is helpful
anymore (have been on it since 1995). I am absolutely doing this with my
doctor's permission and direction.
My psychiatrist wants me to try Lamictal, and my rheumatologist has mentioned
Lamictal as well. I am very resistant to this drug, based on what I have
read regarding the possibility of Steven Johnson syndrome. In the past, I
have experienced Serotonin Syndrome which required overnight hospitalization,
had a near fatal reaction to Fentynal, and lost 50% of my hair while on Depakote.
I am on my 4th trial of Lithobid (300mg), but in a while, I will probably have
to stop the Lithobid because of side effects. I am also taking 16mg of
Gabatril per day (for pain). I am also on .100 of Levoxyl, 200mg Provigil,
100 mg Trazadone, 6mg of Levorphanol (total each day), as well as anti-inflammatories,
muscle relaxants, and several meds for allergies and asthma.
Last spring, I was hospitalized for 2 weeks while I was taken off a majority of
my meds so that we could see if any of my meds were making my mood swings worse.
We did find that the Fentanyl I was on at that time was causing severe
depression (and I am no longer taking that med), but we found that everything
else I was taking seemed to be fine. We slowly added meds back over a
period of 9 months, to see if they were still necessary, which my docs and I
feel they are.
I have been hospitalized 6 or 7 times since 1993 due to my mood disorder.
I had 13 or 14 ECT treatments in a 5 week period in 1994, but found ECT to be of
little help. I have also been in counseling fairly regularly since 1990, with
very talented psychologists. I have been with a great psychiatrist since
1994. I even have a Master's degree in experimental psychology. . .I know
a lot about mental health (or lack thereof). I am very compliant with all
of my treatments, and work really hard to keep my mood balanced.
I am scared to take Lamictal after the three intense drug reactions I have
experienced. My intuition says not to try this med. At the same
time, there really are very few meds left for me to try. My doc is going
to try adding calcium channel blockers to the Trileptal, but he really thinks I
should try Lamictal. Is this worth trying with my history? Is
Lamictal safe to take when I am on so many other meds?
Thanks for your time!
Dear Lisa --
Your hesitation is understandable, with your experiences so far. I note that
Tegretol (carbamazepine) is not on the list. It too causes about the same risk
of that kind of rash. Yet we've been using that one for years and not making a
big deal of the rash because there's another big deal to make about that one
(risk of reducing blood cell counts). So, there's something funny going on about
the rash-risk talks we're delivering to patients. There are so few other
problems with lamotrigine, maybe there's just proportionally more room for
talking about the rash problem. It is a serious problem, no question there, I
don't mean to minimize it.
However, Provigil is pretty new. Using new medications indicates a
willingness to take unknown risks. If that's the case, it's hard to
explain, at the numbers level, an unwillingness to take a known risk.
Don't get me wrong, I don't expect all risk evaluations to be rational; that's
not how our brains work. But if we really want to do a studied risk evaluation,
we need to use the part of our brain that works with numbers, not intuition
(there's a great little book about that, although very technical, called
Judgement Under Uncertainty, by Tversky and Kahnemann). In that context, for
all the medications you've taken thus far, and because there's no connection
(that I know of at this point) between your previous reactions (Fentanyl and
serotonin syndrome) and the mechanism of the lamotrigine severe rash (the
Stevens-Johnson type version), this risk of lamotrigine is pretty clearly in the
ballpark of the risks you've taken already.
Of course if you take it you're going to be watching pretty close for a rash.
The rash rate on placebo under these circumstances (after the big rash emphasis
in lamotrigine research studies) was 9% in one study (Bowden 2003; the rash rate
on lamotrigine in that study, any rash, not SJS, was 11%). So you should expect
to be worried, and there should be a well-established plan for how you're going
to handle various different rash-like phenomena (itching, redness but not
raised, on arms vs. face, what "mucous membranes" to watch for (mouth, nose,
eyes, nipples, vagina, anus) so that you don't have to figure that out when you
see something. You have about a 9-chances-in-10 to see nothing, right?
Remember you can go even slower than the usual recommendations, and that
might reduce the rash risk another 1% or so according to my rough calculations
based on the manufacturer's data. Good luck and no-rash-wishes to you.
Published September, 2004