A rash - But is it THE rash?

[Endless]

Help.

It's 2:00 in the morning and I'm itching myself to death. I'm ramping up Lamictal - taking 25 mg twice a day. Just upped my dose this last thursday.

Yesterday I started getting a rash ringing my underarms, and on my ankles. It's spread to my legs, and a little to my face. On my legs and underarms it's not like the Lamictal Rash pics, with large red spots. It's little tiny pinpoint red spots that don't really show unless I itch them. And it feels like white-hot little needles pricking me all over. I've also had an extremely stuffy nose, and had what I thought was kind of the flu (achy, sweaty, sore throat), but the flu like stuff seems better now. The two spots on my face are larger (half a dime), slightly raised and flat, and peeling.

The killer is that I've already had a rash with Keppra, Topamax, and possibly Propranolol. Those rashes were different - bigger spots and all over. They left permanent purple splotchy scars/discoloration on my skin in some places.

I don't think this is THE rash. Just A rash. I really don't want to stop taking Lamictal. I'm running through these meds one rash after another. And Lamictal hasn't blown my brain out of the water like the others, so I really want it to work. Anybody stuck through the rash and had it go away? I know what you are going to say.... tell my doc right away. But really, I don't want to. He might take me off the Lamictal, even if it's not THE J/S rash. And like I said, I really need this one to work.

Questions:

Q1: Stevens Johnson syndrome isn't a pinpoint rash, right? It's big flat spots. So I might have some time to play with this and see if I can get it go away.

Q2: Benedryl made my nose bleed like crazy when I was on Topamax. Does that mean it probably will on Lamictal as well?

Q3: If I've had a rash with 3 different anti-convulsant medicines, does that mean I am allergic to them ALL? (this would be terrible)


This post is about to deteriorate into whining, so I'll sign off. Your advice is extremely welcome at this point.

[Zoofemme]

Hi Endless...check out this pic...is this what it looks like?

http://www.webmd.com/skin-problems-a...e-of-heat-rash

When I get heat rash it stings like the dickens...for some folks (like my hubby ) it is just a minor irritation. I tend to get it under my arms, around my neck, wrists, ankles and behind my knees...basically where I seem to sweat the most. You can look up more pics too check it out.

The other would be poison ivy but it chains up, lol.

[Jan4you]

Well sorry about that rash.. does your doctor know?

When my husband had the rash while on Lamictal it was in the groin area. And they stopped the Lamictal. But I swear they put him back on it later.

I just had a rash with Trileptal. ANd when I had steroids for MS. But for Trileptal it just kept spreading and spreading. I was having horrible side effects immediately but by the 3rd week of dosing up.. i was so sick with heachache, off balance and dizzy!!!!

My rash even kept spreading as I was weaning down and off Trileptal. It was nasty.

What I read is when it hits your mouth it is dangerous. But most docs will take you off of it and consider that an allergic reaction.

Let us know what you doc says ok?

Jan

[Endless]

My PCP said, "go see a dermatologist." My neurologist never returned the call.

I called several dermatology clinics and the soonest they can get me in is over a month away. I asked the front desk to tell the triage nurse just two words - "Lamictal Rash," and the nurse would probably work to get me in TODAY. They all said they don't triage new patients. A month away is the best they can do. In my opinion, this can't wait a day, let alone a month.

The rash doesn't look like the heat rash photo. Behind my arms the little bumps have now joined hands and is a big red angry itchy burning mess, about the same size around as 2-3 golf balls. It's still pinprick bumps on my legs and arms, now spreading to my rear end. Ugh.

Once again I feel like I'm hanging out there alone without the help I need from my neurologist. I need a new one. A good one. One I can count on to help me when I need it. Right now I'm not getting help from any doc, period.

I'm going to slide into a cool soda bath. Maybe that will help.

[Endless]

Well, I take it back about not getting help from my PCP. She called the dermatologist that said "not till may" and now I'll be seen this afternoon. Hooray. (itch, itch, itch)

I still need a new neurologist.

[RobinN]

Increasing a med + rash = I would conclude it was connected

But then again... I don't wear a white coat.

[nightfighter]

Help.

It's 2:00 in the morning and I'm itching myself to death. I'm ramping up Lamictal - taking 25 mg twice a day. Just upped my dose this last thursday.

Yesterday I started getting a rash ringing my underarms, and on my ankles. It's spread to my legs, and a little to my face. On my legs and underarms it's not like the Lamictal Rash pics, with large red spots. It's little tiny pinpoint red spots that don't really show unless I itch them. And it feels like white-hot little needles pricking me all over. I've also had an extremely stuffy nose, and had what I thought was kind of the flu (achy, sweaty, sore throat), but the flu like stuff seems better now. The two spots on my face are larger (half a dime), slightly raised and flat, and peeling.

The killer is that I've already had a rash with Keppra, Topamax, and possibly Propranolol. Those rashes were different - bigger spots and all over. They left permanent purple splotchy scars/discoloration on my skin in some places.

I don't think this is THE rash. Just A rash. I really don't want to stop taking Lamictal. I'm running through these meds one rash after another. And Lamictal hasn't blown my brain out of the water like the others, so I really want it to work. Anybody stuck through the rash and had it go away? I know what you are going to say.... tell my doc right away. But really, I don't want to. He might take me off the Lamictal, even if it's not THE J/S rash. And like I said, I really need this one to work.

Questions:

Q1: Stevens Johnson syndrome isn't a pinpoint rash, right? It's big flat spots. So I might have some time to play with this and see if I can get it go away.

Q2: Benedryl made my nose bleed like crazy when I was on Topamax. Does that mean it probably will on Lamictal as well?

Q3: If I've had a rash with 3 different anti-convulsant medicines, does that mean I am allergic to them ALL? (this would be terrible)


This post is about to deteriorate into whining, so I'll sign off. Your advice is extremely welcome at this point.

Hi endless,

I am not officially diagnosed yet(eeg has been negative)But I have small seizures
seven days a week, typically most of day and all night.I have not had a tonic clonic.
Am currently on 300mg. of lamictal and 225mg. of effexor.(though I have now been taken off effexor as of today.)
The lamictal has agreed with me extremely well,but only the name brand-
the generic-lamotrigine gave me a terrible reaction
I as well have recently developed extreme itchy rahes however I do not fear they are
'the rash' because they are small and dont seem to be to threatning.
I have never had nose bleeds before,since starting lamictal
If none of the anti-convulsants work, maybe in the mean time you can inquire about clonopin.For myself it works extremely well.(its a anti-convulsant and mild tranq.

[Endless]

Thanks, everybody, good information from all.

The pinpoint rash has morphed into big red blobs the size of my fist, all over my body. The dermatologist said it's a drug reaction. Since I want to stick with the Lamictal, we're going to try to "treat me through it" and see if we can get it to go away. That and watch it extremely carefully.

She put me on some kind of extra-strong steroid cream that I'm only allowed to use for a couple of weeks max, and get this - I'm not allowed to use soap on my body. Water in the shower 2x a day, but no soap! I predict I'll be spending a lot of time alone, and will have no problem with people wanting to sit next to me on the bus. I also am supposed to use CeraVe moisturizer a couple of times a day, and take zyrtec antihisamine.

Itch, itch, itch, burn, burn. I'm going nuts. I can't imagine having this for the rest of my life, if I'm on Lamictal for the rest of my life.

I'll call tomorrow and get brand name lamictal, as suggested.

[Jan4you]

I am so sorry you are struggling so. BUT I just read in my "epilepsy" book how this is all a drug allergy and the longer you wait.. the worse it is..not just for the RASH but will make you sicker MEDICALLY!!

I know how much you want to stay on Lamictal..but an allergy is an allergy.. untreated.. it WILL make you sick hon

Sorry..good luck

Jan, the QUEEN of drug interactions/allergies!! LOL

[Endless]

Hi, Jan,

I saw a dermatologist and she said it isn't Stevens Johnson syndrome - not yet anyway. Not all drug reaction rashes are life-threatening. Some are just a rash. She said there's a chance if we jump all over the rash maybe we can get it tamped down. And if it doesn't go away or escalate, either one, I'll have a choice to make. Which is worse, the rash, or not being able to take Lamictal? At this point since I've had a rash with three anti-seizure meds, moving to another med might not be any better. So we'll watch carefully, and medicate the heck out of it.

[Jan4you]

Well my dear, I admire your your tenacity ~!!!

Just don't want to see you get sicker. All I read that once you are have a rash as a side effect you will probably have it with other anti-epileptic drugs that typically can have a rash as their side effect.

Hope it improves for you

Jan

[Endless]

Thanks, Jan!

I hope so, too. I'm starting to run out of all of the best of the possible medications....

[Jan4you]

Yes I am in the same boat.. cannot take ANY of those typical rash kind..but so far Neurontin is working FINE ...whew!!

Hugs

Jan

[Endless]

Ahhhhh Neurontin! It's what I have to thank for this mess. I was on a low dose for nerve pain, and we suspect it triggered a massive increase in seizures, and a marathon of doctors until I found out what's going on. I meant it when I say "thank" because at least now I'm diagnosed.

[Zoofemme]

Endless...I wouldn't worry about a water-only bath too much...you'd be surprised at just how clean you will actually get. There are all kinds of chemicals typically in a city water supply so no worries there. As for the "smell" issue...we women aren't like men (normally) who have large sweat glands and use them profusely. A good rinse every day should control any odor you might build up...lol.

[Endless]

Update

The good news: The rash is already more than half gone everywhere I put the Triamcinolone Acetonide Ointment that the doctor prescribed. That stuff is amazing. Regular cortisone cream hadn't made a difference at all on the rash. I'm itching a little in those areas, but it's not like yesterday.

The bad news: The rash has spread to some new places, and they itch like the devil. I'll use the ointment there, too, and hope my body stops reacting soon. I don't think the Zyrtec has made a difference. If the rash continues to spread I'll have to quit the Lamictal.

In the meantime I'm keeping my epileptologist pen with me all the time, and keeping an eye on it.

Jan, I'm so happy that the Neurontin is working for you! It's one I could tolerate, too. I'm not ruling out for the future. Maybe it was the "low dose" aspect that triggered all the seizures for me. It might work for me at higher doses, if it comes to needing a new med.

[Rae1889]

.
I have never had nose bleeds before,since starting lamictal

I didnt have a nose bleed before either since I started the Lamictal. turns out it had a drying effect on me so it might on you too. But I would get that rash looked after. mine started out innocent and would go away and come back then burned like the dickens, and then my face and throat etc swelled and I broke out in a terrible painful rash. it was horrible. turns out it was a reaction to the Lamictal. They couldnt say for sure if it was SJS but they took me off to be on the safe side.

Update

The good news: The rash is already more than half gone everywhere I put the Triamcinolone Acetonide Ointment that the doctor prescribed. That stuff is amazing. Regular cortisone cream hadn't made a difference at all on the rash. I'm itching a little in those areas, but it's not like yesterday.

The bad news: The rash has spread to some new places, and they itch like the devil. I'll use the ointment there, too, and hope my body stops reacting soon. I don't think the Zyrtec has made a difference. If the rash continues to spread I'll have to quit the Lamictal.

I'd say as much as you like it, I'd stop the drug. There are ways to help get rid of the steven johnson rash, so your treatments could be masking the real problem. which is why its moving. mine sounded alot like yours. more like a sun burn at first feeling. then it would only be red when I itched. then I swelled up like a balloon and itched to high heaven. so they took me off to be safe. You could talk to your neurologist and see if Lamictal has any sister-meds that you could take. *like trileptal has tegretol*

In the meantime I'm keeping my epileptologist pen with me all the time, and keeping an eye on it.

I have one too now just incase it wasnt the med that did it, because I hadnt changed anything new around the time I got the rash except starting lamictal.
What do you carry and epileptologist pen for? is it possible that you are having an allergy to something else?

[Endless]

Laughing.. this darn forum. It's not an epileptologist pen, it's an E-P-I pen. The software on here thought I was abbreviating and changed it! An "E-P-I Pen" is an emergency rescue adrenaline auto-inject device used for allergic reactions.

I WISH I had an epileptologist pen - an epileptologist right in my pocket that I could pull out for questions or emergencies. How much are they and where can I get one? lol....

[Endless]

Oh, and no couldn't be my other allergy. No beestings here.

[occb]

I didnt have a nose bleed before either since I started the Lamictal. turns out it had a drying effect on me so it might on you too. But I would get that rash looked after. mine started out innocent and would go away and come back then burned like the dickens, and then my face and throat etc swelled and I broke out in a terrible painful rash. it was horrible. turns out it was a reaction to the Lamictal. They couldnt say for sure if it was SJS but they took me off to be on the safe side.

We refilled generic lamotrigine last month because we didn't have enough for the brand name, and that's when the itchy rashy started (although, it's not so bad as to be visibly noticeable. I've looked at most of his body and not noticed anything out of the ordinary). So far as I know, he's had no nosebleeds either, unless there's something he's not telling me...? *arches eyebrow at nightfighter*

This month we'll be refilling on the brand name, and I bet you 10 to 1 the itchy/rash goes away and the meds are more effective. Nuts to being too broke for brand name, even with insurance coverage.