I've Had This Condition Since The Age Of 16..am Now 45

I have suffered with cold sores on my lips since I about 5 years old.  At the age of 16, I got this terrible rash that at first glance from one dermatologist he supposed it to be caused from scabies.  He prescribed a lotion and I went home...knowing that it would work cause he was a doctor.  After having this rash for the 3rd week...and progressively getting worse..I had these lesions and blisters all over my entire body in varying circumferences and just itched and was in pain.  My palms..my scalp..my ears..the soles of my feet..up and down both arms and legs.  Finally, saw a different practitioner and he diagnosed me with erythemultiforme cause by a herpes sore that I had on my lower lip for about 2 months.  He prescribed prednisone and zovirax.  I healed fairly quickly after the treatment. 

From then on, my rashes would come and go...have been hospitalized 4 times for the condition because it was so bad.  Then, for some remarkable reason, between the ages of 35 and 42, I never got the rash despite getting cold sores here and there.  Then, from age 42 to present (I'm now 45) I have had at least 4 outbreaks but minor nonetheless one time was on my hands and I had just started a new job.  About 4 weeks ago, another bout but this time minor with the exception of lesions in both nostrils that have been there for about a month..they bleed..not healing despite my best efforts. Prior to this outbreak, I did have cold sore.  It cleared up before the rash began.  Now, the lesions on my extremities are healed but I have another cold sore.  Been taking large doses of acyclovir and just trying to deal with the sores in my nose by keeping them dosed with antibiotic ointment cause it keeps the membranes soft so they don't hurt as bad.

I am so afraid...been thinking about applying for disability myself cause this a debilitating, chronic condition.  I have never known anyone to have this except for me..haven't heard of anyone who has this condition.  It makes you feel ugly and it's painful and it's slow healing.  I am an avid cyclist and love to exercise and because of all of this...I isolate myself most of the time.  Don't want to get involved in a long term relationship cause I don't think it's fair that someone would have to be subjected to this and more than likely, they won't understand.  Once, when I was hospitalized with the rash, I overheard a maintenance person say to someone that I had gonorrhea..I was mortified!  How ignorant people can be..and in a hospital, no less.

Anyway, would love to know if I could chat with someone who has this menace.

bikegrl06 bikegrl06
4 Responses Jul 27, 2010

Hi, I have had EM since I was 18 years and I am now 38. I have had it vaginally, eyes have been affected to the point weher they were blood shot red and sealed in the morning, skin , hands, toes, and orally. This condition has plagued my existence as it just recured all the time and got to a point where it was just always there and never went away. After spending money on specialist that didn't know anything, so desperate and frustrated to control this horrible condition, i tried all kinds of things. Finally I found a way to control the symptoms and have been symptom free for 4 years. Please visit my website www.erythemam.com to read my full story and see how i managed to stay symptom free.

Me too, hate it, happens when I'm anxiously anticipating anything exciting, and I'm hoping it won't eventually kill me as I get ancient. I have noticed, sun, chlorinated pools, and too much caffeine can trigger my outbreaks. Been on Prednisone about 20 times now, and I understand that stuff is bad for me as well. I hope you never have another outbreak, and life gets better for you! Just needed to share.

I have had EM since the age of 15 i am now 54 . I do get it after a cold sore outbreak but not all the time.I find the if i am stressed or if i am going away on a holiday i will break out. I think that by taking multi vitamins every day and especially vitamin B that i can keep it under control. They start on my hands and then if it gets really bad it then spreafs to my feet,knees and elbows

Summary:<br />
To completely prevent recurring Erythema Multiforme, apply a high SPF lip balm (Blistex 5-star protection or similar) anytime you have sun exposure. Apply even if you are only going to be in the sun for 30 seconds. <br />
During an EM outbreak, use Petroleum Jelly on blisters and in places susceptible to blistering.<br />
<br />
My Story:<br />
I was first diagnosed with EM-minor in 2004 (age 24). The doctor prescribed Valtrex 500mg/day. His position was that the cold sores were bringing about the EM. That seemed to make sense because I had my first cold sore around that time. But the outbreaks continued with increasing duration, degree, and frequency. I had only blisters on the hands, feet, and elbows in the beginning. But an outbreak in 2008 sent me to the emergency room because a blister was so close to my eye. The doctor suggested that I use petroleum jelly (which is ok to get in your eyes). That brings me to the first real helpful form of EM mitigation – Petroleum Jelly. Using petroleum jelly on the areas of skin that are blistered or that I think may become blistered due to trauma has significantly improved my condition. It doesn’t prevent an episode of EM, but petroleum jelly does seem to make an outbreak more manageable. During an outbreak, I ALWAYS keep a coating of petroleum jelly on my hands and the tender skin near my eyes. <br />
<br />
Though I continued the 500mg/day of Valtrex, I was not convinced it was helping. The petroleum jelly was good, but it did nothing to prevent an outbreak. I continued to search for a better solution. I realized that an OTC medicine I had taken for years named Prilosec shows EM as a rare side effect. I immediately discontinued it, but continued to suffer EM outbreaks. Though the frequency of EM episodes had consistently increased over time, the frequency really took off after I moved to NYC in 2009. What had begun as a condition that caused 2 or 3 outbreaks per year had become almost every month or 2. Healing lesions from previous outbreaks would still be visible by the onset of the next outbreak. Erythema Multiforme outbreaks went from being an annoyance to something that was ruining my life. <br />
<br />
I finally went back to the drawing board and thought about the EM-cold sore link. I suffered EM without visible cold sores, but never visible cold sores without EM. Perhaps attacking cold sores more aggressively would help. I remembered reading that EM is more common in the spring, when people are outside in the sun. I searched online and learned that sun exposure on the lips can be a leading cause of cold sores. I remembered that my EM episode frequency increased after relocating to NYC (where I walk in the sun instead of drive). Putting 2 and 2 together, perhaps sun exposure on the lips is somehow triggering EM outbreaks. In spring 2010, I started using SPF 30 lip balm (Blistex or Chap-stick) before going out in the sun, even if I’m only going to be in the sun for 30 seconds. <br />
I have only had 2 outbreaks of Erythema Multiforme since that time, both occurred just after unprotected sun exposure. The first was in October 2010. I went for a walk on the beach and forgot to bring lip balm. I told myself that a few minutes of sun exposure shouldn’t hurt. But less than 1 week later I had EM blisters on my hands, feet, elbows, and face. Then in March 2011 I visited a park and forgot to carry the Blistex with me. I thought that any UV exposure would be minimal, since it was like 6pm. But a few days later I suffered another episode of Erythema Multiforme. I am not suggesting that high SPF lip balm will cure your EM, but it has been 100% effective for me (assuming that I actually apply it).<br />
I have also obtained a presc<x>ription for Denavir online. I considered applying a small amount to my lips weekly for prevention, even though it is not indicated for such. But I haven’t felt the need to test this method because the Bistex has been so helpful. If you have been struggling to come to grips with Erythema Multiforme, please try using a high SPF lip balm several times per day. Give it a shot and see what happens. Good luck in your quest for getting your life back from this horrible condition.<br />
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