I am having a rash from tegretol and I paged my Dr. but she won't call me back. How long do I wait?! What do I do?! It isn't severe enough to go to the ER or anything, but I am so itchy. I am not sure I can take benadryl on the combo of drugs they have me on, which is why I need her to CALL ME. Maybe this is less of a discussion and more of a vent. I have gotten this rash several times from tegretol but it went away after an hour, but this time it is persisting. It keeps changing position. I KNOW it isn't stevens johnsons syndrome or anything. But itchy itchy itchy!
Hi
You could try taking a cool bath with tablespoon of bicarbonate of soda unit. This is good for cooling itchy rash. Hope this helps
ANN
I had a similar situation, doctor didn’t get back to me for two days. By then the rash was everywhere and my face was swollen. I finally got into to see him and he took me off Tegretol immediately, and gave me a steroid. I am not recommending you go off Tegretol without doctors okay, but maybe a visit to urgent care is warranted.
Best of luck!
Call your local pharmacy, tell them what meds you're on and ask if it's okay to take Bennadryl with those meds. The pharmacist will know. I call my pharmacist all the time to ask about med questions :) They're a wealth of information. Good luck!
Hi LGHiker, I debated whether to write this or not but I feel like I have to. I got Stevens- Johnson from Trileptol. It started out exactly the same way, we couldn’t get the dr., my husband and I made a decision to taper down when the rash first started to spread, then loaded up with the highest dose of Benedryl possible, got off Trileptol totally after just the first dose of tapering down, drank lots and lots of fluid to try to flush the meds out, pushed the Benedryl. Finally got to see the Dr who was taken aback and surprised. The rash covered my whole trunk area next, then seemed to grow together in a large dark red purple mass. Then it peeled then blistered. Meanwhile the same horrible thing was happening in my throat and my mouth and I got deep sores all over my mouth, on the roof of my mouth, on my tongue, everywhere. When they “peeled” it came out in big, big thick chunks. My mouth took several months to heal and was incredibly painful, in fact tears come to my eyes as I write this. This whole thing took months to heal. I have scars on my arms and my mouth is tender and sore much of the time. There are whole groups of anti-seizure meds that are used for TN, as you know, which I can never take because they are related to Trileptal. I have to be very careful about any meds I take now because once you have Stevens-Johnson you are more susceptible to getting it again. I am very, very fortunate, however (we call it blessed, which is not the first word you think of when you think of TN) because it could have been so much worse. Some people don’t have it very severely, we might have done just the right thing at the right time to slow it down-- we have asked some of those questions but the drs just don’t know.
All this to say, please don’t wait, go to a clinic, take Benadryl (it doesn’t change the nature or action of the drug, just your bodies reaction to it I.m.h.o.–not trying to give medical advice here) just don’t wait. Please! Take care. TL
Thank you all for your replies. TL, thank you in particular for sharing your difficult story. I am so sorry this happened to you. I am sending you gentle hugs!
I talked to my pharmacist he said Benadryl was a good idea. It seemed to help. I also have decided not to take tegretol until my Neurologist contacts me. This morning I feel a kinda itchy, but no rash anywhere really. I'm no Dr., but I think that's the end of the tegretol for me. I wish it hadn't helped with the TN pain, that would make it easier to deal with the idea of my body rejecting it.
Off to have anoooother MRI in a few hours. Joy.
Wow…I also have a rash that is covering my stomach going up my side’s into my under arms to my back and also on my legs! I noticed it while taking Trileptol (Oxcarbazepine) and Gabepentin. I went back to my neurologist who wasn’t very concerned but told me to stop the Oxcarbazepine and increased the Gabepentin to 1800mg. The rash is still here…at times it seems to get better and then I notice more spots. I’ve called my neurologist who said I needed a dermatologist! Benadryl doesn’t help any more I’m assuming because I have taken so much of it! I see a new neurologist on Thursday who hopefully can give me more time and help! Wow…
What a pain more2loooove. Don't you just feel like a ping pong ball?!... being bounced around from drs.
Well, my light rash has decided to make another appearance. I took more benadryl but this time it doesn't seem to be helping as much. The problem is it comes and goes so I can't go to a Dr because chances are it will have disappeared and they will have nothing to look at.
At least my Dr. messaged me back (we use this patient online messaging system)... for an older message I had sent her last week.
I am not sure what to do now. I feel like all I can do is wait for it to either get better or worse. I feel powerless.
LGHiker...yes I do! It seems like no one wants to take responsibility for treating me! It's bad enough with the pain but it's worse with the side effects. My prayer is that I will be led to a doctor that is compassionate and caring who wants to help! I haven't worked in almost a month because the pain is so bad and my neurologist (well his nurse) just messaged me saying that he wants to fit me in for an appointment...really...it only took maybe 8 phone calls and numerous messages for you to figure that out!! It's sad but the reality is that most doctors just don't know how to treat TN!
LGHiker said:
What a pain more2loooove. Don't you just feel like a ping pong ball?!... being bounced around from drs.
Well, my light rash has decided to make another appearance. I took more benadryl but this time it doesn't seem to be helping as much. The problem is it comes and goes so I can't go to a Dr because chances are it will have disappeared and they will have nothing to look at.
At least my Dr. messaged me back (we use this patient online messaging system)... for an older message I had sent her last week.
I am not sure what to do now. I feel like all I can do is wait for it to either get better or worse. I feel powerless.
Glad everything worked out. I'd go find a new doctor TOO. My neuro gave me his cell phone and even home phone number when he started me on a new med.
LGHiker said:
Thank you all for your replies. TL, thank you in particular for sharing your difficult story. I am so sorry this happened to you. I am sending you gentle hugs!
I talked to my pharmacist he said Benadryl was a good idea. It seemed to help. I also have decided not to take tegretol until my Neurologist contacts me. This morning I feel a kinda itchy, but no rash anywhere really. I'm no Dr., but I think that's the end of the tegretol for me. I wish it hadn't helped with the TN pain, that would make it easier to deal with the idea of my body rejecting it.
Off to have anoooother MRI in a few hours. Joy.
Hello, I had a bad reaction to tegretol and my throat tried to swell shut. Def stay on the benedryl and if you can't talk to a doc, if you are having a reaction to medicine, CALL THE PHARMACIST! The pharmacist where I was (I was working a special needs camp and couldn't drive to an ER) said to take a benedryl and not to take it again. I didn't have anything like seizures happen when I went cold turkey. A pharmacist is a great resource, as is an ER (if its bad enough) or urgent care clinic!