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grannyenem 12-23-2003 12:15 PM

erythema multiforme
 
I am new to this board. Has anyone out there had experience with a condition called ERYTHEMA MULTIFORME? This condition is triggered by a cold sore or fever blister. I would appreciate any light you could shed on the subject.
Thank you.

Salvatore954 12-28-2003 01:02 PM

Re: erythema multiforme
 
[QUOTE=grannyenem]I am new to this board. Has anyone out there had experience with a condition called ERYTHEMA MULTIFORME? This condition is triggered by a cold sore or fever blister. I would appreciate any light you could shed on the subject.
Thank you.[/QUOTE]

I have had chronic erythema multiforme for 20 years. It would come and go on my back, chest, and arms. Sometimes disappearing for a couple of years. The palms of my hands are beet red. Doctors never new what was causing it. I have never had any cold sores or genital sores. I was given steroid creams or if it was really bad I was put on a short course of predisone. In the last four years, it has been extremely bad covering my back and chest. Steroid creams barely touch it. In the past couple of years a couple of doctors feel certain I have a subclinical HSV-I infection and want me to take Valtrex and apply Elidel cream. I do not want to take Valtrex since it would have to be taken daily for the rest of my life. Now that I know what it is, I can treat it. I have been using Lauricidin (monolaurin) for about eight months with some success. The first couple of months it got worse, then it cleared completely after about six months. Then it came back and now it is somewhat cleared again. So I am not sure how well it is working. Outbreaks at first were milder and cleared much quicker. I usually get a red spot at first that then develops into a red splotch or centrally clearing circle that usually takes forever to clear. Some spots have lasted for as long as a year before clearing. If I apply a solution of alcohol, Lauricidin, and aspirin to the red spot when it first comes out, it seems to clear much quicker and often does not develop further. It is pretty much asymptomatic, though sometimes the inflammation on my arms will burn a little and once in awhile the red dots will break out suddenly over an area with a brief itch. Some say this is all very rare; some say it is common. I have never spoken to another person with this, and my dermatologist has actually never seen another case of it. My internest has absolutely no idea what I am talking about. I think the diagnosis is relatively new and is called Herpes Associated Erythema Multiforme(HAEM) as opposed to Drug Associated Erythema Multiforme(DAEM). There is a very good article on HAEM on the web. It is medically technical but explains the syndrome in detail. If I can find it, I will post the link. I hope this helps you. I would love to hear about your experience with this because as I stated I have never found anyone with this to compare notes with.

Sal.

grannyenem 12-29-2003 09:02 AM

Re: erythema multiforme
 
Thank you for sharing. It is difficult to find anyone who knows anything about this condition. It is absolutely devastating to my daughter. It seems that the herpes simplex-1 (cold sore) is what triggers the condition. Thank you again for sharing your experience with us.
Grannyenem


[QUOTE=Salvatore954]I have had chronic erythema multiforme for 20 years. It would come and go on my back, chest, and arms. Sometimes disappearing for a couple of years. The palms of my hands are beet red. Doctors never new what was causing it. I have never had any cold sores or genital sores. I was given steroid creams or if it was really bad I was put on a short course of predisone. In the last four years, it has been extremely bad covering my back and chest. Steroid creams barely touch it. In the past couple of years a couple of doctors feel certain I have a subclinical HSV-I infection and want me to take Valtrex and apply Elidel cream. I do not want to take Valtrex since it would have to be taken daily for the rest of my life. Now that I know what it is, I can treat it. I have been using Lauricidin (monolaurin) for about eight months with some success. The first couple of months it got worse, then it cleared completely after about six months. Then it came back and now it is somewhat cleared again. So I am not sure how well it is working. Outbreaks at first were milder and cleared much quicker. I usually get a red spot at first that then develops into a red splotch or centrally clearing circle that usually takes forever to clear. Some spots have lasted for as long as a year before clearing. If I apply a solution of alcohol, Lauricidin, and aspirin to the red spot when it first comes out, it seems to clear much quicker and often does not develop further. It is pretty much asymptomatic, though sometimes the inflammation on my arms will burn a little and once in awhile the red dots will break out suddenly over an area with a brief itch. Some say this is all very rare; some say it is common. I have never spoken to another person with this, and my dermatologist has actually never seen another case of it. My internest has absolutely no idea what I am talking about. I think the diagnosis is relatively new and is called Herpes Associated Erythema Multiforme(HAEM) as opposed to Drug Associated Erythema Multiforme(DAEM). There is a very good article on HAEM on the web. It is medically technical but explains the syndrome in detail. If I can find it, I will post the link. I hope this helps you. I would love to hear about your experience with this because as I stated I have never found anyone with this to compare notes with.

Sal.[/QUOTE]

grannyenem 12-29-2003 09:11 AM

Re: erythema multiforme
 
I read the link on the internet that you referred to. Thank you for introducing the HAEM term. I was not aware of that way to access information.

I do have another question or two if you don't mind. Do you have pain in your joints (like knees and elbows) following an attack of Erythema Multiforme? Do you have dry eyes or pain in your eyes? Do you have any other physical symptoms after or during an attack? Do your lesions look like the target lesions that are pictured all over the internet?

Thank you for sharing,
Grannyenem

[QUOTE=Salvatore954]I have had chronic erythema multiforme for 20 years. It would come and go on my back, chest, and arms. Sometimes disappearing for a couple of years. The palms of my hands are beet red. Doctors never new what was causing it. I have never had any cold sores or genital sores. I was given steroid creams or if it was really bad I was put on a short course of predisone. In the last four years, it has been extremely bad covering my back and chest. Steroid creams barely touch it. In the past couple of years a couple of doctors feel certain I have a subclinical HSV-I infection and want me to take Valtrex and apply Elidel cream. I do not want to take Valtrex since it would have to be taken daily for the rest of my life. Now that I know what it is, I can treat it. I have been using Lauricidin (monolaurin) for about eight months with some success. The first couple of months it got worse, then it cleared completely after about six months. Then it came back and now it is somewhat cleared again. So I am not sure how well it is working. Outbreaks at first were milder and cleared much quicker. I usually get a red spot at first that then develops into a red splotch or centrally clearing circle that usually takes forever to clear. Some spots have lasted for as long as a year before clearing. If I apply a solution of alcohol, Lauricidin, and aspirin to the red spot when it first comes out, it seems to clear much quicker and often does not develop further. It is pretty much asymptomatic, though sometimes the inflammation on my arms will burn a little and once in awhile the red dots will break out suddenly over an area with a brief itch. Some say this is all very rare; some say it is common. I have never spoken to another person with this, and my dermatologist has actually never seen another case of it. My internest has absolutely no idea what I am talking about. I think the diagnosis is relatively new and is called Herpes Associated Erythema Multiforme(HAEM) as opposed to Drug Associated Erythema Multiforme(DAEM). There is a very good article on HAEM on the web. It is medically technical but explains the syndrome in detail. If I can find it, I will post the link. I hope this helps you. I would love to hear about your experience with this because as I stated I have never found anyone with this to compare notes with.

Sal.[/QUOTE]

Salvatore954 12-29-2003 05:52 PM

Re: erythema multiforme
 
Hello,

No, I do not have any joint pain. Occassionally I have experienced dry eyes following an outbreak, and I have also had swollen lips following an outbreak. As I said I have never had any cold sores, so maybe the swollen lips is my HSV-1 infection. I used to get perfectly round target leisions all over my back, as if someone painted them on. Now it is more splotchy and undefined but you can still see it clears centrally. My back is its favorite spot, but also my chest and upper arms. I have had leisions on my neck and face. Once a big round one circling my adam's apple. Go figure!!

I have gone to many doctors and as you say, no one seems to know too much about this. Last time I saw my present dermatologist, he said he just returned from a medical conference where this was discussed and all chronic EM cases are due to HSV-1 even though the person may not exhibit a classical HSV-1 infection (me!!).

Anyway, are you treating it? The standard medical treatment would be Valtrex orally plus Elidel cream applied topically. Elidel subdues the immune reaction that is causing the EM and Valtrex is of course an antiviral drug for herpes that can be taken as a preventive measure. I have not tried any antiviral drugs so I cannot vouch for how they work. I guess they would work as well as they do on any herpes infection. Once you have an EM lesion, it is too late. The virus already has come and gone. So prevention of an outbreak is the key. I find stress brings it out big time. As I said it has been awful the last four years. I do not think it is any conincidence that I started a new job four years ago that I absolutely hate. Prior to that, the leisions would just seem to come and go with no apparent cause.

I can sympathize with your daughter. If not already, she should try treating it as I said. I am not in favor of drugs but you have to do what you have to do.

Please respond with any treatment you have tried.

Sal


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