Em Suffering Is Rubbish

Hey Matt, if you're on facebook you should look up the Erythema Multiforme support group for sufferers and their families. We would love to have your input with the condition and we are a support for one another too.

Summary:

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.

During an EM outbreak, use Petroleum Jelly on blisters and in places susceptible to blistering.



My Story:

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.



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.



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.

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).

I have also obtained a prescription 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.



-Matt

I have had EM for 25 years - almost constantly. No known cause. It has been very difficult. I was helped greatly by thalomid ( thalidomide) but the cost of this drug by Celgene has risen over 400% since I first began taking it in 2001. It does suppress my disease but is very difficult to afford even with insurance. Unfortunately, it began being used as a cancer drug and Celgene began raising the price. My first prescription for a one month supply was $365. It now cost almost $4000 a month.

But it does work. I hope your disease will not recur - I have a very rare case and it has been almost constant for 25 years.