Baseballfan

I will look at endos and see where it goes --- the ID guy we went to in March is young --- he put her on valtrex and she had a reaction -- so he referred us to OSU derm. The one we see now is a young Derm and is an immunologist. I'll ask her bout IV . Thanks

We saw infectious disease doc when this all started. He referred us to dermatology. We asked about antiviral via IV and was told by doc it doesn't have any advantage. We will ask again tomorrow when we see Derm/immunology at university of cincinnati.

We thought same thing but this rheumy was highly recommended and told us she does not have an autoimmune disease and the low titer score of 1:160 did not mean she had autoimmune. He took six viles of blood and said all looked good. Our Derm --- who is also an immunologist tested biopsy for lupus and said it was not lupus --- we are so confused. Our normal life has put on hold. Back to Derm tommorrow for more biopsies. Beginning to wonder if this is going to stop. Very discouraged and an amazed how an HSV she has had for years can suddenly take control of er skin.

Initial explanation from ana report said possible SLE or drug induced lupus --- both have been ruled out.

Her ANA was positive -- 1:160 Rheumotologist did testing --- determined nothing autoimmune . Derm doubled famvir dosing Friday --- had a good weekend then woke up Sunday with a couple of new spots. I just can't understand why this is happening. We are going back to see Derm mo day because of infection from her biopsy spot. Completely discouraged--- my wifes skin was so beautiful . Why did this happen to her now? She's had HSV for many years with little or no complications. Made appt with mayo clinic in Florida for late October.

Thanks Our derm we see now is also an immunologist and said she does not have lupus --- no other symptoms and biopsy said no SLE. Just Lousy EM rash what she feels is being fueled by HSV infection that will not go back to sleep or go into hiding.

Thanks We are patient but we want this to stop. She might developed a reaction to sunlight through all this. Her skin outbreaks seen to come right after she has been outside . How do you test for that? Is that something a rheumy would test for?

Thanks Lol My wife is only having erythema multiforme skin rash outbreaks --- still no visible HSV symptoms --- she's not had a visable one for a couple of yeArs still Derm thinks it's linked to HSV. We have made appt at mayo clinic and she is going to go off BC . Also she is gonna double dose of famvir and see what happens. Pray this stops!'

How did you get it under control? She took acyclovir for 3 months and now is taking famvir and has had two EM breakouts since switching ---- her HSV has still been silent through this entire six month ordeal

I just cannot understand how she could be having a an EM reaction to the HSV virus now after she has had it for many years without any real complications.

We saw an ID doc during her initial outbreak which was severe. He said it lookedi like EM because of the mouth sores and blisters and put her on Valtrax --- which made her lips swell up two days later so we stopped. That's when the doc referred us to a Derm at Ohio state who told is it was EM and that it would go away and never come back --- that was in March --- boy was he wrong. Today she is having a minor outbreak on her hands and wrists again --- obviously the famvir is not working. We are at a total loss as to what to do now. We are so frustrated and scared . Thanks for your support. Every doc --- except one out of the nine we have seen--- thinks since she has an HSV infextion that it is driving this. No way to stop it either even though her HSV spot has never presented itself during this entire ordeal.

I'd just like to talk to someone who has gone through this --- we are told by docs they see this a lot but I can't find anyone who has this EM at all!!

exactly --- but that's the only way docs treat this --- unless of course they can find a med that might be causing it. Just has not been enough research on it. They could eventually use dapsone or thilidamide as a last resort. Or she could go off BC!!!

She has not had an HSV outbreak in about 2 years!!! Also we do not see an endo -- That's what is so strange about this whole thing --- she would get an HSV blister on her knee about every other year and it would last a week or so and then go away. It has not been presented at all during this entire EM ordeal.

I'm tryin to talk into going off BC --- like I said one Derm said it might be a trigger to this EM while a specialist Derm said the BC probably did not cause it but rather her HSV --- id just like to get the same opinion.