Discussions By Condition: I cannot get a diagnosis.

What's the best treatment for erythema multiforme?

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: clairdeluny
  • April 12, 2009
  • 07:02 AM

I was diagnosed with erythema multiforme in 2004; flash forward this recurring rash is starting to look more like erythema multiforme major. I have terrible joint and muscle pains, I can barely sleep for all the pain,the rash is in my throat as well as mouth and lips. The rashes are all over my body in varying sizes and some have blisters, some don't, but the area where most of the rash is clustered tends to be on some type of joint, which I guess causes the joint to hurt. I have skin that burns incessantly to the point where I've been crying and begging for help with the pain, only to get 2 tylenols. I know that treating the pain only could make the EM major worse, so I do ask about corticosteroids, treatment for my hair (my scalp has rashes also). A doctor has prescribed acyclovir but with or without the acyclovir the rashes tends to start going away within 2-3 weeks. I'm seeking advice from someone who has been there or know of someone who has, and what treatment was given to address all of the problems (the burning skin, itching rash, bad joint and muscle pain, inability to sleep because of pain/discomfort)?

Reply Flag this Discussion

2 Replies:

  • I was diagnosed with erythema multiforme in 2004; flash forward this recurring rash is starting to look more like erythema multiforme major. I have terrible joint and muscle pains, I can barely sleep for all the pain,the rash is in my throat as well as mouth and lips. The rashes are all over my body in varying sizes and some have blisters, some don't, but the area where most of the rash is clustered tends to be on some type of joint, which I guess causes the joint to hurt. I have skin that burns incessantly to the point where I've been crying and begging for help with the pain, only to get 2 tylenols. I know that treating the pain only could make the EM major worse, so I do ask about corticosteroids, treatment for my hair (my scalp has rashes also). A doctor has prescribed acyclovir but with or without the acyclovir the rashes tends to start going away within 2-3 weeks. I'm seeking advice from someone who has been there or know of someone who has, and what treatment was given to address all of the problems (the burning skin, itching rash, bad joint and muscle pain, inability to sleep because of pain/discomfort)?Dear everyone,I have suffered from SJS (the advanced stage of erythema multiforme) for six years. The reaction is caused in my case by the Herpes simplex virus, or cold sores as they are more commonly known. The amino acid L-Lysine is by far the best treatment for cold sores I have found-that includes all the over-the-counter chemical creams and tablets such as Zovirax and Acyclovir. it can be bought as a supplement in tablet form from most health food stores. The first three episodes of SJS were very bad and I was hospitalised for almost a month each time. The doctors, even the consultant doctors, had a very limited approach to treating SJS; at first they gave me steroids, which I realised, after the third episode, had made it ten times worse (In my experience from talking to other SJS sufferers steroids can help some people suffering from SJS but can make the reaction worse in others, and unfortunately I was in the latter group.) I was given anti-histamine tablets in high doses, which only very minimally relieved the pain and itching of the blisters. I have suffered reactions each time I've had a cold sore since, but by not taking steroids as a treatment the reactions have still been bad but nowhere near as bad as the first three episodes. Then last year my mum met a man on the internet who also suffered from SJS. This is a message he sent to her: "I am happy to give you more information regarding Citrus Bioflavonoid. They are natures most powerful anti-inflammatory. SJS/TENS is an inflammatory response of the body to something it is allergic to. The body swells up and cuts off the nutrition to the skin and the internal organs. they die and fall of in relation to the skin and the internal organs just swell up and pop. This is a basic description. the swelling (inflammation) puts pressure against the nerves so they make things feel like they are burning, ergo the constant description of a burning sensation. It is a swelling response so something that stops the swelling will stop the progress of the inflammatory condition. Anti- histamines are the right choice but they are not strong enough to do the job if given in the normal dosage. Pure Citrus Bioflavonoid are safe, water soluble yet very powerful. They are a co-vitamin C. They are not vit. C, but have some of the characteristics. They boost the immune system, would help with scurvy, but the main thing they do is to stop swelling (inflammation). They activate the macrophage in the cell to metabolize the proteins which draw the fluid. When they eliminate the protein by flushing it out through the vascular system, it allows the lymphatic system to do its job and flush out the fluids from the cell. Therefore no swelling. For your son, if I were he, at the first sign of an inflammatory reaction, I would start taking 4,000 to 5,000mg of Pure citrus Bioflavonoid at 3 times a day, and the swelling would stop. This should happen within a couple of days or sooner. You want to use only Pure Citrus Bioflavonoid that does not have Hesperidin nor Rutin in their formularies as those are blood thinners which could compromise other situations. That is what I did and was only in the hospital for 4 days before I was released with no more swelling and no side effects. I buy my bioflavonoids from Vitamin World in the mall as that is the cheapest source and they are a stable brand and readily available. If you have any more questions, please feel free to contact me directly. If you would like to call me, feel free 304-390-5047 or send me your phone number and I will call you on my nickel. I hope this helps."I got some bioflavinoids from 'Chorley Health food Store' (based near Manchester, England) and the next time I began to suffer the reaction I began taking them at the dose recommended by this man. Unbelievably, within about four days the reaction had stopped and the few blisters I had had almost healed completely. Now, each time I begin suffering the reaction, I take the bioflavinoids and the same thing happens; the reaction stops. I would like to say a few things. Everything I have said about the effect that L-Lysine and the bioflavinoids has had on my cold sores and SJS is completely subjective; i cannot say for certain whether it will work for other sufferers as everybody's system is different. Also, although taking such 'super-doses' has been useful in treating my cold sores and SJS, it is possible that it may be harmful to the body in some other way; I simply do not know. What I do know is that I suffered greatly from SJS before, and now taking the bioflavinoids, I do not. So far (after a year and a bit) I have not suffered any noticeable side effects from taking such large doses of these supplements. After all, they are not chemicals, merely naturally occurring substances. Look up L-Lysine and bioflavinoids for yourself and make your own decision as to whether to take them as a treatment for SJS. Personally, I feel like they have given me my life back.
    Anonymous 42,789 Replies Flag this Response
  • 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
    Anonymous 42,789 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.
Advertisement

Safe Sex With Hepatitis C

Prevent the spread of the hepatitis C virus.

Preventing Lung Infections

With COPD, it’s important to protect your lungs.

8 Health Dangers of Depression

Unmanaged depression can take a toll on your physical health.

Food Choices for Diabetes

What, when and how much you eat affects your blood sugar.

6 Exercises for Multiple Sclerosis

Ease your way into these stretching and strengthening moves,

Advertisement