EM disease-health

EM disease

Our athletic and very healthy son developed EM suddenly over a period of about 3 days from just an uncomfortable feeling in his hands to full blown hot, red, swollen and non-stop burning pain in his hands and feet. It was about a week, four different Dr.'s and an emergency room visit before he was diagnosed with EM. He was in constant flare for about 10 weeks straight including a 10 day hospital stay before we started to get a handle on it.

Now that he has been flare up free for over 3 months and counting, the entire experience seems surreal and we go everyday with worry. He has gained all his strength back and is playing football for his high school and doing great.

I know EM is different for everyone. His case was just the hands and feet blazing red with burning pain in the 9 out of 10 range non-stop for two months. Relief only came from applying cold (ice water) and when cold was removed it came back full blast.

What worked for us was applying Preparation-H (old formula with just the vascular constrictor Phenylephrine HCL) to provide pain relief to hands and feet only, avoided cold at all costs, and applied the Amitriptyline/Ketamine cream 4 to 5 times a day (basically never allowing it to dry out). Flare ups stopped within three days of this constant treatment so there was no longer any use of Preparation-H but we continued the Amitriptyline/Ketamine for 5 weeks and then slowly weened to 3 times a day, then 2, then once a day for a few days. I think stopping the Amitriptyline/Ketamine too early can let the condition come back (like a fire almost put out but then rages back if not all the way put out).

At the end of the 5 weeks of this treatment, all the skin on his hands and feet came off in thick large chunks. This seems like it was almost a reboot of the hands and feet skin.

We weaned him off all oral medications (25 pills a day of various types) as none seemed to help anyway. We are very worried but at the same time haven’t seen a sign of EM since 3 days after starting the above routine.

We are so grateful he is better and really hope this can help somebody else even if it is just one person. There seems to be so many different presentations of EM. If you are suffering from just your hands and feet, please give this a shot, there is nothing to lose and so much to gain.

To think of others going through what my son did and us as close family members is heartbreaking. I’m tearing up just writing this. Good luck to all who have this and my family’s thoughts and prayers are with you.

A short forum type paper written when the flares stopped for good and how we got there:

http://www.coreutilitiesinc.com/EM/EM_PotentialSolutionForSome.pdf

Other info:

The Amitriptyline and Ketamine cream was compounded from Dollar Drug in Santa Rosa, CA. They say they can ship to CA and Oregon only but are local for us. They were fantastic. Kaiser doesn’t cover it at all and cannot compound it themselves so we had to have our GP call in the order to them and we had to pay out of pocket. It was worth every penny and 1/100th of the other hospital and Dr. costs.

They said the formula is: 1% Amitriptyline, 0.5% Ketamine and a Lipoderm Base. Even though it says on the bottles to apply 1 to 2 times a day we applied generously 4 to 5 times a day – basically didn’t allow it to dry up and made sure not to wash it off. We wanted the skin basically saturated in this cream – it took a lot. Note that hands took 3 days to show improvement and because of added cold the feet took almost 4 weeks and only when we stopped applying cold.

For pain relief and to avoid applying cold, we tried to find an over the counter vasoconstrictor. Preparation-H has many formulas, take a look at Wikipedia and it details nicely. All we were looking for was the original formula. The one we used has only 3 active ingredients: Mineral oil 14%, Petrolatum 74.9% and Phenylephrine HCI 0.25%. It was the Phenylephrine HCI we were after and as it is available over the counter for about $7.99 it was a no brainer – no need to compound this. The package is yellow with a bluish color. Other formulas contain other items but not the vasoconstrictor.

Be careful if you buy the wrong version of Preparation H it might not contain a vasoconstrictor! What was also great about the Prep-H is it lasted for quite a while allowing long term relief and needed sleep.

Can you post a pic here of the preparation H tube?

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Thanks my dearest friend!

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Prep-H was just used for temporary relief and to avoid using cold for relief.

Can you where shoes with all of this? I get cold burning too and have to keep tennis shoes on inside my house.

So when I get redness on my toes I'm going to try putting the correct prep H on them. I have some of that cream that Mayo made up for me 2 years ago( maybe still active). Mine is 2% amitriptyline and.5% ketamine When do I apply the cream?

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Maybe one of us can try this!?

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The cream?

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Yes. ♡

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angela1608 The P-H is it with prescription?

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No.

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Prep-H is over the counter $8. We used it only for pain relief to avoid cold at all costs. We feel the Amitriptyline/Ketamine cream is what fixed the problem but ONLY by avoiding cold - we even warmed to keep 70 degrees or higher - not even a fan. The …#

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I have some sort of compounded cream from about a yr ago I will try and find it bc I think it had some of these ingredients. My only problem is I have cold burning too inside my house.

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I am wondering where's a pharmacy that doesn't charge a fortune? I was able to find one in the green bay area. One hundred and forty dollars for one ounce? Most pharmacist in my area don't make compound creams?

Denise, we have a local pharmacy that makes the compound creams. Want me to check on price for you?

Thank you, that would be greatly appreciated!

denise73 just called my local pharmacy. For the prescription listed above, they charge roughly $40.95 for 100 grams and if you ship regular mail there is no charge for shipping. I have no idea how much 100 grams is

Hmm, I don't know either? What's the name of the pharmacy? I can call and ask them?

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I have an rx but being on a tight budget due to me not working I can't afford it.

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I'm like that too Wendy

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I wonder if just using the Prep-H alone will help?

I am going to try it..no harm

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This is wonderful news about your son! May he continue to do well! I think it's great that he was able to return to playing football...thank you for sharing!

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I wonder how the cream worked. I thought those drugs were just for pain. Interesting.

I used ketamine etc cream and saw no relief...I used three tubes that were expensive and small. I am almost tempted to try this with the cream again but not sure.

Maybe by just keeping pain level down while keeping the feet warmer...

angela1608 that's a good thought

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I think I did a poor job of explaining what we did. We did 3 things and didn’t waiver from it at all:

  1. Applied Amitriptyline/Ketamine cream 4 to 5 times a day to just hands and feet skin that was red. No break – constant for 5 weeks. Do not give up and were consistent with no lapses. It took 3 days to see any improvement in the hands and 4 weeks to see improvement in the feet (only after we stopped getting them cold).

  2. Did NOT wash off the cream – didn’t even get wet. If it did get wet or we thought maybe some had been washed off we reapplied immediately.

  3. Did NOT subject the hands or feet to cold under 70 degrees. For us this was the critical step that allowed the cream to work. A few times he did apply cold and the flares came back within 24 hours. He became convinced cold was causing a problem and then NO cold at all for relief. Just Prep-H and nerve blocks in his legs.

We used the Prep-H to help with pain only. We didn’t waiver from this at all. It took days of this routine just to see the red areas start to go out, the skin started to turn a waxy yellow and we didn’t stop the routine. If things get better continue the routine.

Amitriptyline 1%, Ketamine 0.5%, Lipoderm Base compound - went through thousands of ounces. Tube says to put 2 ounces on hands and feet each application but we did much more than that.

Prep-H: Mineral oil 14%, Petrolatum 74.9%, Phenylephrine HCI 0.25% (vasoconstrictor)

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Did you have him wear socks to stay warm? That's what I am doing today because my husband won't turn the ac off.

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I tried prep h today and my feet turned blue and started burning worse. So I can't do this!

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Thank you paul8 for sharing your son's experience with us. I'm very happy to hear it worked for him and that he is doing much better now. Yes, it's a crippling, undiagnosed condition and I have been suffering from it since 1992, on/off. It used to flare out for 3 months every 4-6 years but this time, since January 2016, I can not get it to go away.

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I read your text above and also, accessed your link and read it, I can not believe that an engineer will analyze the condition the way u did but doctors are not able to do nothing about it. let me say it better, not willing to research it and come to at least some relief to all of us who are suffering.

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My doctor who happened to be a Kaiser doctor as well, all he was able to say, I'm not familiar with this condition. I even asked him to write about the condition on the Medical Network website that is only for doctors to access and use to share conditions with other doctors and get their feed back, he said to me, do not worry, we do not have to do that, we will take care of you, yep, he did nothing to get me relief

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