Help a very sad mama-- experiences staying on Lamictal post rash?
September 28, 2017 8:30 AM Subscribe
(YANMMD) I have had sudden onset severe post-partum depression following the birth of my son three months ago. I am in good hands with a great therapist and loving partner. I tried anti-depressants and had a terrible reaction. Lamictal *seems* to have been working but two days ago I broke out in the (benign) Lamictal rash. My psychiatrist would like to try a re-challenge. I am itchy, scared, and sad. Can anyone share their own experiences with a Lamictal re-challenge as well as any tips for dealing with the rash itself?
I started at 25mg and was on that for two weeks with no issues then went up to 50mg and about three days later broke out in the rash.
I have seen a dermatologist who confirmed it is allergic not Stevens-Johnson syndrome or TENS.
Because I can't take anti-depressants and the Lamictal seemed to be making a difference my prescribing psychiatrist has dropped me to 25mg and basically told me we'll wait and see. The rash is extremely itchy and all over my torso and back. I am using Benedryl at night, Claritin during the day and calamine lotion.
I've been scouring the internet and have found some helpful studies and academic articles but can't seem to find stories of 1) people who have done the re-challenge with Lamictal at all/successfully 2) How long the rash itself is supposed to last/if it ever goes away.
I am crushed to think about starting from square one with a new medication. If anyone could share their experiences I would be very grateful. Please don't tell me just to go off the medication or that the rash itself is dangerous. I promise I really have been checked out by professionals and am already feeling pretty sad and scared.
I started at 25mg and was on that for two weeks with no issues then went up to 50mg and about three days later broke out in the rash.
I have seen a dermatologist who confirmed it is allergic not Stevens-Johnson syndrome or TENS.
Because I can't take anti-depressants and the Lamictal seemed to be making a difference my prescribing psychiatrist has dropped me to 25mg and basically told me we'll wait and see. The rash is extremely itchy and all over my torso and back. I am using Benedryl at night, Claritin during the day and calamine lotion.
I've been scouring the internet and have found some helpful studies and academic articles but can't seem to find stories of 1) people who have done the re-challenge with Lamictal at all/successfully 2) How long the rash itself is supposed to last/if it ever goes away.
I am crushed to think about starting from square one with a new medication. If anyone could share their experiences I would be very grateful. Please don't tell me just to go off the medication or that the rash itself is dangerous. I promise I really have been checked out by professionals and am already feeling pretty sad and scared.
I tried Lamictal twice and got the rash both times - it went away the first time (well, both times) within a few days of tapering, and we reintroduced the medication much more slowly on the second try in the hope of avoiding it happen again.
Once it happened twice, though, my psychiatrist was not happy for me to continue with the medication. I don't know if this is a UK/NHS thing or a broader recommendation, but she was fairly clear that rash twice = we're not continuing with this. YMMV depending on your doctor.
The rash came on quickly enough both times that I didn't really get a chance to see if it was doing anything for my mood, so it was an easier decision to say "okay, not that, what's next". And it went away quickly enough from tapering off that I didn't experience severe itching - sorry I can't suggest anything for that.
posted by terretu at 8:55 AM on September 28, 2017 [1 favorite]
Once it happened twice, though, my psychiatrist was not happy for me to continue with the medication. I don't know if this is a UK/NHS thing or a broader recommendation, but she was fairly clear that rash twice = we're not continuing with this. YMMV depending on your doctor.
The rash came on quickly enough both times that I didn't really get a chance to see if it was doing anything for my mood, so it was an easier decision to say "okay, not that, what's next". And it went away quickly enough from tapering off that I didn't experience severe itching - sorry I can't suggest anything for that.
posted by terretu at 8:55 AM on September 28, 2017 [1 favorite]
My experience with Lamictal mirrored yours; bumped up in does and got the benign rash. My psychiatrist pulled me off of the medication immediately and informed me of the low rates of the rash abating with time. The rash isn't dangerous, but if you're experience what I did, it's not really tolerable, and my doctor said it rarely dissipates (but, my doctor is not your doctor and IANAD, IANYD, etc) Hydroxyzine helped the rash a little bit more than benadryl did, but did not combat it completely, nor to the point of it being tolerable.
You mentioned that you "tried anti-depressants" but that's a huge category, have you tried most classes, even some of the older ones? I've been troubleshooting medications for over a year now, and I've been on two dozen or so, and still trying to find a good fit. Troubleshooting meds is a absolute bummer, and I'm really sorry you are in that spot.
posted by furnace.heart at 8:56 AM on September 28, 2017 [2 favorites]
You mentioned that you "tried anti-depressants" but that's a huge category, have you tried most classes, even some of the older ones? I've been troubleshooting medications for over a year now, and I've been on two dozen or so, and still trying to find a good fit. Troubleshooting meds is a absolute bummer, and I'm really sorry you are in that spot.
posted by furnace.heart at 8:56 AM on September 28, 2017 [2 favorites]
Best answer: I'm so sorry. This is actually the first I've heard of the rash being itchy, but I do get a non-itchy rash if I accidentally double up a dose, which happens probably 3 times a year for the last 10 years. It's very red and splotchy and covers my face and neck (the first time I ever got it I went to emerg as instructed, but they quickly determined it wasn't the dangerous one). So is it possible that, on that third day, you took an extra pill by accident?
I would think it's very worthwhile trying a smaller increase - get the pharmacy to cut the 25s in half so that you're taking 37.5 mg a day.
Also, there are many, many different antidepressants to try, of numerous drug classes, and it can take months to years to find ones that works. There are also drugs like Seroquel or Latuda or Abilify that can help. Don't give up.
posted by kitcat at 9:39 AM on September 28, 2017
I would think it's very worthwhile trying a smaller increase - get the pharmacy to cut the 25s in half so that you're taking 37.5 mg a day.
Also, there are many, many different antidepressants to try, of numerous drug classes, and it can take months to years to find ones that works. There are also drugs like Seroquel or Latuda or Abilify that can help. Don't give up.
posted by kitcat at 9:39 AM on September 28, 2017
Best answer: I took it for a little while for Epilepsy, and obsessively followed various forums on the subject. There were many, many people who developed a benign rash from it, and went on to re-introduce it very successfully. It is one of the least problematic medications for Epilepsy, so lots of people try to stay on it and make it work. Although I was very stressed about the idea of getting a rash, everything I read made the situation seem fairly hopeful. Maybe take a look at some of those forums, to see more people's experiences. Good luck!
posted by thegreatfleecircus at 9:42 AM on September 28, 2017 [1 favorite]
posted by thegreatfleecircus at 9:42 AM on September 28, 2017 [1 favorite]
I also want to add, I titrated up as slowly as humanly possible. I started out cutting the tiny pills in half (so 12.5 mg, then 25, then 37.5, etc.) and basically stretched out the dosage increases twice as long as typically suggested, and never once made a dramatic jump in dose. I felt much more comfortable and optimistic doing that, versus doubling the dose at certain points as instructed.
posted by thegreatfleecircus at 9:49 AM on September 28, 2017
posted by thegreatfleecircus at 9:49 AM on September 28, 2017
This was a while ago, but when a family member was switching to Lamictal (from Depakote) for epilepsy, the doctors had them titrate up in 5mg increments, staying at each new level for a week before adding the next 5mg.
posted by expialidocious at 1:31 PM on September 28, 2017
posted by expialidocious at 1:31 PM on September 28, 2017
Best answer: My daughter got the rash the first time we tried it with her and we were successfully able to re-introduce it at a slower titration schedule at a later point in time (I don't remember how long transpired between attempt #1 and attempt #2--a year maybe?). It ultimately didn't help her condition so we dropped it after a few months and went in a different direction.
posted by drlith at 2:32 PM on September 28, 2017
posted by drlith at 2:32 PM on September 28, 2017
Best answer: TINY titrations has been imperative for me over the course of 25+ years worth of mental health treatment.
I did get a rash (primarily inside right arm) within a few days when I first started Lamictal. Stopped immediately per instruction of my pdoc, waited a couple weeks for me to stop freaking out about it and to consider my pdoc's recommendation that I try it again, much slower this time, and I was rashless and much better on my second attempt. I continue to take Lamictal daily since then, years now.
Regardless of whether you try this med again or something else, I wish you well.
posted by mcbeth at 7:07 AM on September 29, 2017 [1 favorite]
I did get a rash (primarily inside right arm) within a few days when I first started Lamictal. Stopped immediately per instruction of my pdoc, waited a couple weeks for me to stop freaking out about it and to consider my pdoc's recommendation that I try it again, much slower this time, and I was rashless and much better on my second attempt. I continue to take Lamictal daily since then, years now.
Regardless of whether you try this med again or something else, I wish you well.
posted by mcbeth at 7:07 AM on September 29, 2017 [1 favorite]
This thread is closed to new comments.
Meanwhile, does calamine lotion help, or benadryl topical cream? Or soaking in epsom salts?
I hope you you feel better soon.
posted by mareli at 8:43 AM on September 28, 2017