Not rash, but spots

General TN Discussion
1

Ok, I read the previous posts about rashes but none seem to address my particular question, so here it is. I have been taking 1600mg of Tegretol for 8 years. No problems, except for the part where it’s not working anymore. I am also taking Gabapentin (recently went up to 2400mg daily) and for about three weeks, 30mg of Baclofen a day.

Not impressed with the pain relief but I am managing and actually doing better. I still can’t eat, but I can talk again. Nice.

However – I have spots. Two on my right wrist, then one on the left. Back to the right wrist. Then two on my foot. Saw the dermatologist. She prescribed cortisone, which makes them go away, but new ones keep popping up, one or two a day. Derm said it is not a drug rx, but…

I know that Baclofen is kicking up my Tegretol. So – has anyone had this kind of rash, AND does anyone think that the Baclofen (or the Gaba) is creating a Tegretol rash where no rash every existed before?

This is very concerning to me bc I’m getting ready to switch from Teg to Trileptal and my fear is that if I’ve got “The Rash” that I can’t take Trileptal either and then I’m pretty much up shit’s creek. Pardon my French, please.

By the way, I started cutting back the baclofen tonight and plan to drop it.

Seeing a new doc in the morning who should have some answers but as always, the answers from this group are life-saving.

Thank you!

Faye

2

I like this New Zealand site for anything skin related: https://www.dermnetnz.org, they always have pictures and detailed information. Specifics for anticonvulsant skin related issues can be found:https://www.dermnetnz.org/topics/anticonvulsant-drugs-and-the-skin

Several other medication sites list possible tegretol rash-like side effect to be “purple or red pinpoint spots under your skin”

I would definitely have a neurologist look at whatever is going on with your skin, particularly since it sounds like it’s reoccurring. And there’s the fact that, although rare, any change in dose could bring on a rash. And by dose that could also be the basic bio-availability of the medication, which gabapentin could be increasing since gabapentin is known to boost the effectiveness of meds.

3

Thanks. The NZ site has info I didn’t find elsewhere. I should have mentioned, my spots are much more like hives or mosquito bites, not the SJS purple/red rash. But hive-like spots are listed as a carbamazepine response. I am starting to feel very frustrated by my current neuro who is almost my old neuro. I will talk to this new doc, not a neuro, but a TN expert, tomorrow, about my spots.

4

Remember to post an update as I’ll be thinking about you!

I also suggest bookmarking that New Zealand site, I found it when I had a series of moles appear (freaked me out, of course). The derm I went to not only assured me the moles were fine but also gave me this same site as a resource going forward so I feel very comfortable using their info as a guide for anything vaguely skin related.

5

Hi Zapgirl
I got spots while on trileptal .They were like mosquito bites.Mostly my lower right leg-which is the side my pain is on.One on my right elbow.
They never cleared up-they oozed stuff if I scratched them.
Doctor said they were not the rash.
But I never had anything like that before.
I then started having them on my face where the pain is and my doctor tested and it was a bacterial infection.This was 6 months after the fist pimples appeared.I was put on an antibiotic and it took ALL the pimples away(even the leg and arm ones) except for one on my face.
SO-I do not know if it was the trileptal or a weird bacterial infection that showed up at the very same time.
Once the last pimple is gone from my face for a few weeks I might try trileptal again and see the results.But I need to book with my doctor to see how we can get rid of it.
So-you might have that.
Good call on the dermatologist.
Wish my doctor had referred me .One of the leg sores was festering.

6

Hello. Happy New Year. No matter what my state, I always start the new year out with hope, which is how I am today. Not good, but hopeful.

My update is mostly unexciting.

I cut my Baclofen from 30 to 15mg a day. After 6 days of this, I am not developing any new spots, and the ones that popped up in the last few days went away without cortisone. So this feels like an improvement. I would say that the pain is worse with less Baclofen, but I prefer not to have spots. They were making me really worried.

I was counting on an appointment with a new doctor last Wednesday but there was a bad communication mistake between the office and the call center that booked the appointment and when I arrived, the doctor was not even there. This resulted in a significant fuss on my part, which is really hard when you have zaps, and ultimately, a long visit with the manager who was super helpful. So a bad situation might have been turned around because I got to connect with her. We will see.

This week, I am hoping to hear from the neurosurgeon who ordered my latest MRI, so that he can share his thoughts. Obviously, a lot is riding on this information.

Yikes.

I am also seeing the current, soon to be former neuro, who told me to drop Tegretol cold turkey and switch to Trileptal. I am looking forward to having some of her time face to face, instead of rushed and on the phone, to discuss her thoughts about making this switch. I have polled a variety of people, mostly pharmacists, and have gotten different answers, although most thought the cold turkey way would be ok. But I need to be as certain as possible, no matter how I do it. So I have a lot of hope for this week to provide some new things to think about.

Sending good thoughts to everyone who visits this site for an easier year. Because if you’re here, chances are good that life has the potential to be better.

Peace -
Faye

7

Thank You for your report on baclofen causing acne.Looked it up.It is a thing.Mine started when I went on trileptal,but I also started baclofen at the same time.So ya,baclofen.I asked my pharmacist why no one had said anything about that and they said that they did not know.
Wishing you health and wellness in the new year.

8

Sigh. Thanks, Ellen5. I am glad that I’m taking less. I think that no medical organization will ever know as much about these drugs and their side fx than we the people who take them daily.

Best wishes back atcha.

Faye