Lamictal Rash called DRESS Syndrome

[lpnsue]

Hi...I am new here and am trying to find anyone who has had a severe rash after taking the drug Lamictal? It is called DRESS Syndrome. I am still dealing with this syndrome after 10 months of starting it...and there is little known of this syndrome and its treatment protocol...please respond with any info or if you think you may have had this...I really need help! Thanx in advance!

[Silat]

I've heard of people dealing with it by using some steroid type medications, and some recommend anti-inflamitories as it is a syndrome that typically causes inflamation of the internal organs. However I'd consult a doctor about those, as you'll want to get their opinion on starting any medication after getting DRESS.

You're right though, there's no established treatments or anything for it. Basically the deal is - Stop the med that caused it and treat the symptoms it creates until it goes away on its own.

[Screamy]

I posted a link here that gives all information about this syndrome...

http://www.amjmed.com/article/S0002-...258-0/fulltext

[Nakamova]

Hi lpnsue, I'm so sorry you're having to deal with this. DRESS syndrome is rare as a reaction to anti-seizure drugs, but it can be devastating. Usually treatment depends on how extensive the hypersensitive reaction is and how much damage occurs before the drug is stopped. Was the Lamictal stopped immediately? Have you had any organ damage (particularly the liver) as a result?

[lpnsue]

Thanks for the replies...I was treated with high doses of Prednisone since last October and just recently stopped it. That is when I started getting breathing problems that have started with shortness of breath and dry consistant cough. In November 2011, I spent the whole month in the hospital with DRESS...my body was on fire all the time, but I never ran a fever. Had to be iced down. The rash also was very painfulk and itched like hell...I guess I asked to be put into a drug-induced coma several times...I have alot of memory lapses during this period, think maybe I shut down due to the pain being so excrutiating...The Lamictal was stopped 2 weeks prior to the hospitalization...my lymph nodes were huge and hard as rocks, I had a hard time even turning my neck...my eosinophils and WBC's were extremely HIGH!!! I also had some liver involvement, but don't now...I had terrible problems swallowing and severe abdominal pain that they would not treat for some reason?!? Hmmm???...after my rash disapated the internal pain started, but ,of course, they couldn't see it, so it wasn't happening according to the drs...so I suffered in pain for months after begging any dr to help me...I finally found a rheumy that did some research on DRESS and is trying to help. Sadly the rash keeps coming back off and on, usually when we staop the Prednisone. There has to be something else out there...i can't take this medication anymore, I have gained 45# since October...ugh!!! sorry so long, but there is so much more to tell, that is why I think we need a support group...maybe one on Face Book??? What di you all think?

[Nakamova]

Per the article below, DRESS has also been treated with High-dose Intravenous Immunoglobulin. I don't know if you've tried that or if it is an option:
http://www.medicaljournals.se/acta/c...55-1168&html=1

[lpnsue]

Hello again...I just wanted to let you all know that I have started a facebook closed support group for those of us who have suffered DRESS Syndrome...name of group "DRESS Syndrome support group"....hope to meet anyone with this to discuss the after effects of the syndrome.