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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 10 of 10. This is the beginning of the thread.
Posted by Lauren B on November 25, 2003, at 7:37:16
Hi. I need a little advice about coping with Lamictal rash. Specifically, I'm trying to figure out what the presence of itchy, little red bumps on arms and legs means—exactly.....postings I've read are a little confusing regarding whether this clearly sensitive reponse to the drug means you should 1. stop gradually, 2. stop abruptly, or 3. tough the itchy bumps out in the hopes that after a few days, the rash subsides on its own and your body begins to tolerate the drug somehow.
I know that with any drug for bipolar disorder, response can be radically different for different folks. I guess by posting this, I'm hoping that someone with an experience close to mine can offer guidence.
So, as to the narrative: I started taking Lamictal 3 weeks ago on a 25 mg dose every other day. (Prior to that, I'd been "washing out" the long-used maintenance doses of Depakote and my antidepressant, and in fact, had been clear of everything for a week prior to beginning with Lamictal.) After the first week, I ramped up to 25 daily. I felt vague body itchiness, especially in my feet (of all places), dismissed it as psychosomatic, and continued. The real trouble started when I took two 25 mg. tablets daily. After two days of this, those little red bumps I mentioned at the start of the post made their appearance on the inside of both arms and on my thighs. Meanwhile, the "foot itch" (which would be comical if it weren't so annoying) got exponentially worse.This happened after only a two-day dose of 50 mgs. My doctor (not shrink—who I couldn't reach, but my primary care physician) said STOP and see a dermatologist, which I'm doing later today. I left an intense message with my shrink, basically saying, "I'm done with this." But then, I began to do further research online.
Based on what I could determine from the variety of postings out there: Some people seem to get over this rash, which, confusingly, seems to be an annoying side effect NOT ASSOCIATED WITH SJ disorder. (Further confusing things, no posts seem to clearly indicate what SJ disorder EXACTLY IS. I'm guessing it's some sort of extreme allergeric, auto-immune response.)
Can someone tell me what they did about little red bumps....is it SJ or not...did they go away on their own while you still took the drug...or what....I'd like Lamictal to work for me. I'm told it's a better option for a bipolar female who is MOSTLY depressed. I'm functional in society, but there is no joy for me out there and quite frankly, I need to get my "life verve" back again. Lauren B
Posted by polarbear206 on November 25, 2003, at 8:18:56
In reply to Lamictal rash: trying to get the story straight, posted by Lauren B on November 25, 2003, at 7:37:16
> Hi. I need a little advice about coping with Lamictal rash. Specifically, I'm trying to figure out what the presence of itchy, little red bumps on arms and legs means—exactly.....postings I've read are a little confusing regarding whether this clearly sensitive reponse to the drug means you should 1. stop gradually, 2. stop abruptly, or 3. tough the itchy bumps out in the hopes that after a few days, the rash subsides on its own and your body begins to tolerate the drug somehow.
> I know that with any drug for bipolar disorder, response can be radically different for different folks. I guess by posting this, I'm hoping that someone with an experience close to mine can offer guidence.
> So, as to the narrative: I started taking Lamictal 3 weeks ago on a 25 mg dose every other day. (Prior to that, I'd been "washing out" the long-used maintenance doses of Depakote and my antidepressant, and in fact, had been clear of everything for a week prior to beginning with Lamictal.) After the first week, I ramped up to 25 daily. I felt vague body itchiness, especially in my feet (of all places), dismissed it as psychosomatic, and continued. The real trouble started when I took two 25 mg. tablets daily. After two days of this, those little red bumps I mentioned at the start of the post made their appearance on the inside of both arms and on my thighs. Meanwhile, the "foot itch" (which would be comical if it weren't so annoying) got exponentially worse.This happened after only a two-day dose of 50 mgs. My doctor (not shrink—who I couldn't reach, but my primary care physician) said STOP and see a dermatologist, which I'm doing later today. I left an intense message with my shrink, basically saying, "I'm done with this." But then, I began to do further research online.
> Based on what I could determine from the variety of postings out there: Some people seem to get over this rash, which, confusingly, seems to be an annoying side effect NOT ASSOCIATED WITH SJ disorder. (Further confusing things, no posts seem to clearly indicate what SJ disorder EXACTLY IS. I'm guessing it's some sort of extreme allergeric, auto-immune response.)
> Can someone tell me what they did about little red bumps....is it SJ or not...did they go away on their own while you still took the drug...or what....I'd like Lamictal to work for me. I'm told it's a better option for a bipolar female who is MOSTLY depressed. I'm functional in society, but there is no joy for me out there and quite frankly, I need to get my "life verve" back again. Lauren B
Lauren,
Only 1% chance of getting the severe form of SJS when using this drug. I got a rash on my arms and thighs after initial start of Lamictal. I'm a blonde with fair skin. I expected some kind of rash due to this. I hung in there and it went away.Laura
Posted by Larry Hoover on November 25, 2003, at 8:42:08
In reply to Lamictal rash: trying to get the story straight, posted by Lauren B on November 25, 2003, at 7:37:16
As you are seeing a dermatologist, I'm going to restrict my comments....let the doctor interpret your symptoms.
The issue is that you have similar tissues inside your body and on the surface. What you're seeing is also happening inside. How bad it is is the issue.
Many people find the side-effects diminish as the body adjusts to the drug....but not all people. Careful dose adjustment often is the only control you need.
Let us know what the doc says, 'kay?
Lar
Posted by Emme on November 25, 2003, at 14:24:56
In reply to Lamictal rash: trying to get the story straight, posted by Lauren B on November 25, 2003, at 7:37:16
Yes, you can get rashes that are not SJS. Something like 1 in 10 get a rash on Lamictal. The incidence of SJS is very small. You are doing the right thing by seeing a dermatologist right away. Whether you want to give it another go after the rash clears up is something you'll hash out with your doctor and the dermaologist. If you do, you'll probably need a slower titration. Good luck. And yes, as Larry says, please let us know the outcome.
Posted by Ilene on November 25, 2003, at 19:02:10
In reply to Lamictal rash: trying to get the story straight, posted by Lauren B on November 25, 2003, at 7:37:16
This is why you don't want to get SJS:
Click on "SJS Pictures"
Ilene
Posted by stjames on November 26, 2003, at 21:09:51
In reply to Re: Lamictal rash: trying to get the story straigh » Lauren B, posted by Ilene on November 25, 2003, at 19:02:10
I think going from a rash to SJS is a bit much.
Posted by Lauren B on November 30, 2003, at 19:07:09
In reply to Re: Lamictal rash: trying to get the story straigh, posted by stjames on November 26, 2003, at 21:09:51
Thanks everyone for the responses regarding Lamictal; I appreciate your opinions and information.
I agree with the woman who posted, “assuming any rash is SJS is a bit of a leap.” My point is, I don't deal well with rashes. Being itchy and splotchy, even for a few weeks at a time as I adjust, is not my bag. I'm better off on my other meds. Maybe I'm still depressed with them, but I'm not ripping my skin off in the process. Good luck to the others who are dealing with side effects and living with them; I hope you have better luck. Still, I'd say Lamictal has been largely misrepresented by the formal medical writings I've seen posted about it. Except for the postings on this site, all other writings I've found make it appear that in certain rare cases a rash, which could be indicative of SJS, occurs. That's it. There's no mention of general rashiness or sun sensitivity. I'm a journalist and if I were being paid to write something informative and useful about Lamictal, I'd write as follows: Lamictal causes skin sensitivity in many people, perhaps up to 40% of all people who take it based on anecdotal evidence gathered in internet postings. It also appears to interact with many drugs, resulting in a hivelike skin reaction, although there has been little formal research on what courses those interactions take. Many people cope with the presence of itchy red bumps as they adjust to the dose: further more, if they miss doses and ramp up again, they get the rash. These bumps (or may not) go away in time, depending on the person. Obviously, as with all medical treatments, the user will have to see if the benefits outweigh the drawbacks.
Now, that's not particularly advanced or elegant prose, but it blows away most of what I've read in terms of clarity.
Posted by Emme on November 30, 2003, at 22:54:47
In reply to Re: Lamictal rash: trying to get the story straigh, posted by Lauren B on November 30, 2003, at 19:07:09
> I agree with the woman who posted, “assuming any rash is SJS is a bit of a leap.” My point is, I don't deal well with rashes. Being itchy and splotchy, even for a few weeks at a time as I adjust, is not my bag.What did the dermaologist tell you? Has your rash problem subsided? I hope you're feeling better. You may have fewer (or even no) problems on a very slow titration. There is precedence in the literature for successful rechallenge with Lamictal after stopping and waiting for a rash to clear and I get the impression that it's being done more frequently these days. But it is very scary once you've had a rash. My pdoc and I really thought long and hard before starting me again. I also had very itchy skin with Trileptal and when I went back down and ramped up again more slowly I had no skin problems.
> Still, I'd say Lamictal has been largely misrepresented by the formal medical writings I've seen posted about it. Except for the postings on this site, all other writings I've found make it appear that in certain rare cases a rash, which could be indicative of SJS, occurs.
> There's no mention of general rashiness or sun sensitivity.It's misleading in some places and not in others. I have seen it phrased that *serious* rashes occur at very low rates. That's a bit misleading. On the other hand, Medlineplus drug site lists rash as common. Psycom.net lists the incidence of rash as 1 in 10, and dangerous rash as 1 in 1000. BipolarWorld.net discusses the general rashiness. Lamictal.com includes rash as a common SE and discusses mild vs. serious rash. One neurological institute (I can't recall the exact site at the moment, sorry), states that the incidence of rash is 1 in 10. The prescribing information from GSK states that the incidence of rash in clinical trials for bipolar patients was 14% and that the incidence of SJS in adults receiving Lamictal as monotherapy was 0.13%.
I agree that the possibility of sun sensitivity isn't mentioned frequently enough. My dermatologist told me all anticonvulsants can potentially cause sun sensitivity. Pdocs may not be tuned into the sunburn problem. At least for me, the photosensitivity was short-lived and I didn't burn at all this summer.> I'm a journalist and if I were being paid to write something informative and useful about Lamictal, I'd write as follows: Lamictal causes skin sensitivity in many people, perhaps up to 40% of all people who take it based on anecdotal evidence gathered in internet postings.
Anecdotal reports have their place and are helpful for finding out if other people have experienced anything similar, how they handled it, and potential problems for further study. I would *not* rely on internet forum postings for estimates of the frequency of any side effects. You're seeing a skewed population - people come here to get and to give help with difficulties. People who are doing well and haven't had problems are less likely to post on the internet.
It would be interesting (and more representative) to poll pdocs and see how many of their patients have had skin problems. Given the potential seriousness of a rash, most patients probably run (not walk) to the phone when something shows up. I sure did! :) I also wonder if the incidence of rash might be getting lower than the roughly 1 in 10 figure I keep seeing as doctors get more savvy about titrating.
> It also appears to interact with many drugs, resulting in a hivelike skin reaction, although there has been little formal research on what courses those interactions take.
I probably wasn't paying attention to related posts - which drugs? (Aside from Depakote upping the blood levels.) GSK at least lists interactions with other AEDs. They did in vitro studies on about a dozen common psychotropic drugs. They didn't find anything to suggest much in the way of interactions, but those were in vitro and not in humans, and there are a lot of other classes of drugs out there. Were you able to find anything useful on, say, PubMed about drug interactions observed in humans?
> Many people cope with the presence of itchy red bumps as they adjust to the dose: further more, if they miss doses and ramp up again, they get the rash. These bumps (or may not) go away in time, depending on the person.
Again, I think you'd have to somehow look at a broader sample to see how prevalent the skin problems are as well as the diversity of rash types as there is no single rash type associated with the drug (this is noted in prescribing information). I was fortunate in that I had no itchy bumps to deal with. My rashes were smooth and non-itchy.
> Obviously, as with all medical treatments, the user will have to see if the benefits outweigh the drawbacks.
If one were to write a useful and informative article, it should include the benefits as well as the problems. If my pdoc's experience is at all typical, a heck of a lot of people do really well with it and find great relief. It's just nerve wracking checking your skin for suggestions of rash when you are ramping up. The nice thing about Lamictal is that, assuming they don't need to stop due to a rash, many people don't have much in the way of SEs once they've reached a therapeutic dose. It's weight neutral, does't cause sexual side effects.
Emme
Posted by Lauren B on December 5, 2003, at 20:08:35
In reply to Re: Lamictal rash: trying to get the story straigh » Lauren B, posted by Emme on November 30, 2003, at 22:54:47
Emme,
Thanks for your very thorough message...sounds like you might be a reporter, or at least somebody with a reporter's knack for research.
I'm going to check out the sites you mentioned. Who knows? They might have some information on another drug I should try. I was very pissy over the rash (and feeling sorry for myself) when I initially posted my remarks. I'm okay now—back to the Depakote and off my anti-depressant (Zoloft, 100 mgs). Frankly, I'm moderately depressed but functional, exactly as I was on the Depakote and Zoloft combined. So I'd rather take the one—it allows me to sleep—and leave it at that. (I'm not feeling perfect, but who is?) Anyway, in closing, perhaps I'll try the Lamictal again after the holidays and titrate up more slowly the next time—say up by 12 mgs increments. Thanks, again, for taking the time to post a response. I hope you're feeling well and have a decent holiday. L
Posted by Emme on December 6, 2003, at 7:35:38
In reply to Re: Lamictal rash: trying to get the story straigh, posted by Lauren B on December 5, 2003, at 20:08:35
> Emme,
> Thanks for your very thorough message...sounds like you might be a reporter, or at least somebody with a reporter's knack for research.Not a reporter. I'm in science. In the past week or two I've started on a research kick, mostly to try to get a better handle on how psychotropic drugs and alternative remedies work. My understanding is kind of sketchy. I figured I'd better stuff some information in my brain while it is working.
> I'm going to check out the sites you mentioned. Who knows? They might have some information on another drug I should try. I was very pissy over the rash (and feeling sorry for myself) when I initially posted my remarks.
You're allowed. :) I remember feeling terribly upset when I got the first rash because I'd been feeling better and didn't want to have to stop it. I can't recall - have you tried Trileptal?
> I'm okay now—back to the Depakote and off my anti-depressant (Zoloft, 100 mgs). Frankly, I'm moderately depressed but functional, exactly as I was on the Depakote and Zoloft combined. So I'd rather take the one—it allows me to sleep—and leave it at that. (I'm not feeling perfect, but who is?)
IMHO, fewer drugs is better if you can do it. Of course I'm on several, but I'm always hoping to reduce it.
Moderately depressed is better than severely, but I hope you get to be not depressed at all.> Anyway, in closing, perhaps I'll try the Lamictal again after the holidays and titrate up more slowly the next time—say up by 12 mgs increments.
Good luck making that decision. I think 12.5 mg/week is a typical schedule. They make 5 mg chewable tablets in case you need to go even slower. I did. It's maddening to go that slow, but I didn't feel I had any other choice.
> Thanks, again, for taking the time to post a response. I hope you're feeling well and have a decent holiday. L
Same to you!
Emme
This is the end of the thread.
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