EM or something else?

Hello, everyone. My wife has recently developed a problem that sounds somewhat like EM but different. Her palms get red and warm with a bit of tingling but no real pain. It seems to be related to washing her hands a lot. She thought it could be the soap she was using but found changing it didn't matter. She never had this problem until recently and she's always been using the same kind of soap anyway. Dryness seems to be related but it's not like her hands are severely dry. They just seem to get irritated in this particular manner. Redness and warmth with no real pain or itchiness. Does this seem like EM or something else? I can't seem to figure out what it is because it sounds different from the typical eczema and dermatitis that I've read about. Does anyone with EM find that washing your hands repeatedly can bring it on?

Also, I was trying to find some kind of cream that could help sooth and cool down her hands when they're in this state. Something fragrance-free and made with natural ingredients is preferable but whatever works best.

One of the hallmarks of EM is flaring in response to external heat. If your wife is washing her hands with hot water and they are turning red and hot in direct response, then maybe. Next time it happens, perhaps try elevating the affected area above the level of the heart for 5-10 minutes and see if the redness goes away or is decreased.

Also, EM is responsive to coldness. If running cold water over the hand alleviates the heat and warmth, that could be indicative of EM.

I meant “alleviates the redness and warmth.” (I’m typing this on my phone and can’t edit)

Thanks for the info, Carter. She's going to be trying the aspirin test as well. The absence of pain is one thing that has me confused but I've seen some posts by others on the forum who say they don't have pain.

As for topical creams and gels, I'm trying to find one that will specifically help cool her skin. I see Aloe and Lidocaine based gels are marketed for cooling down sunburns. Have people had good results with those? Gels like that are kinda sticky, which isn't good, and don't really absorb all that well. And the lack of pain makes the Lidocaine unnecessary. I've seen some creams with aloe and Vitamin E. Not sure if those would help cool the skin down. We just got some Aveeno eczema cream with colloidal oatmeal to try. Not sure of the effectiveness yet. I saw someone here mention an Aveeno cream with "cooling menthol" which was unfortunately discontinued recently, at least here in the U.S. Would menthol help? I see Eucerin has a menthol cream. Aveeno and Eucerin are rather expensive tho. Here are some other possibilities I've seen at the store. Anyone had any experience with them? Looking for something natural and fragrance-free, if possible.



Alba Botanica Cooling Aloe Burn Relief Medicated Spray

Fruit of The Earth Aloe Gel

Lily of the Desert Aloe Vera Gelly

O'Keefe's Working Hands Fragrance-free hand cream

Zim's Max Freeze Muscle & Joint Gel

Gold Bond Ultimate Healing Lotion w/ Aloe

Eucerin Skin Calming Lotion w/ Cooling Aloe - Fragrance-free

Oil Free Corn Husker's Lotion Heavy Duty Hand Treatment

My experience with creams and gels was unsuccessful. I tried an aloe vera gel and it was ineffective. I also tried a compounded cream that was by prescription containing Ketamine, Gabapentin, Ketoprofen, and Clonidine. That was also ineffective.

I have read some get modest relief with Lidocaine creams. I haven’t tried them myself. I take the oral analog of Lidocaine (Mexiletine) and it works very well for me. Lidocaine and Mexiletine are class Ib anti-arrhythmics. They work by blocking sodium channels. For me, Mexiletine shuts down the entire flaring cycle – the redness, heat, and associated discomfort. It’s important to note Mexiletine does not work for everyone.

The doctor who treats my EM is an anesthesiologist. He says EM arises from defects within sodium channels. When I responded to Mexiletine, he said it confirmed my EM diagnosis. I believe i’m unique here in that I see an anesthesiologist for my EM. He was found by my HMO after I lobbied the upper echelon of its management to do more to find a doctor experienced with EM to diagnosis and treat me.

EM does not always have to be excruciatingly painful. Mine isn’t pain free, but does not seem to approach the levels of some others here. Mine produces more discomfort than outright pain. Mine is also especially responsive to ice, which ensures I don’t have to be uncomfortable long when it does happen.

A word about aspirin. It seems to only be effective for EM that arises from myleoproliferative disorders, namely polycythemia vera and essential thrombocytosis.

Are you familiar with anyone having macrocytosis and EM? Mcv is elevated, no anemia. I’m the first family member to have this. Developed in 2009, EM by 2010.

And did you have any heart issues starting the mexiletine?

No, I have not. What is the cause of your macrocytosis?

I’ve not had any heart issues since starting Mexiletine. I have a normal, healthy heart with familial history as my only CVD risk factor. My doctor did not discuss any heart related concerns with me prior to starting it.

Hi CarterDK

I’m interested in this, because I am responsive to Aspirin but as yet (touch wood) do not have an MPN.

I have heard of a few people on here that are the same - Aspirin seems to help but have not yet developed an MPN.

So I’m happy it seems to help but on the other hand, its concerning that it may arise.