← Return to Hemochromatosis: How do you deal with extreme itchiness?

Discussion

Hemochromatosis: How do you deal with extreme itchiness?

Skin Health | Last Active: Oct 27 5:39pm | Replies (20)

Comment receiving replies
@sherryk473

I know this is a rather old post, I hope someone is still reading it. I am newly diagnosed with hematomachomis. I am a rather weird case, as my iron levels are extremely high, but my ferritin is on the high end of normal. However, my symptoms started with the EXTREME, and I mean extreme itching. I would wake myself up at night because I was itching myself so violently it would break the skin and eventually the pain triggered my brain to wake me up. Then sometimes, I would start out itching, and it would go from one place to another, but it was so bad it just made me so restless, I just couldn't get comfortable enough to be able to relax and fall asleep. I now have permanent scars from scabs that have been almost healed and reopened so many times, and the thing is, once you start scratching, it feels sooo good, you literally can't stop! I went to my doctor, then a dermatologist...both had no clue and just offered creams and steroids, which did absolutely nothing. My daughter is a pharmacy tech for an independent pharmacy in Little Rock and she works with compounds. I told her what I was going through and she informed me that she makes an itch medicine there that works pretty well and they sell a small bottle for $10 and apparently you can get all different sizes. It's like a gel consistency. I told her I was willing to try anything! So she sent me a small bottle to try and it has worked better than anything I have tried so far. There's no steroid, narcotic, or anything like that in it, just a mixture of stuff that actually seems to work well together and unfortunately can only be compounded by a pharmacy. It does dry your skin, a little, but I just make sure to keep lotion on my skin so it doesn't dry out, and it really helps when I have bad flare-ups. I know this pharmacy is in Arkansas, but if you have a good pharmacy, they might be able to call and get the recipe to be able to make it wherever you are, if they are able to compound. I hope this helps.

Jump to this post


Replies to "I know this is a rather old post, I hope someone is still reading it. I..."

@sherryk473 what is that compounded mix called?

Iron overload is only treated by donating blood every 2 months. Blood tests are only measuring the iron in the blood. With this genetic disease the excess iron is stored in the organs, the liver being the first to suffer with cirrosis then cancer. The heart is usually the next organ effected. The iron in these organs is then oxidized by oxygen and turns to rust. The most important blood test is to determine level of this disease is Iron Binding Capacity which should never exceed 50%. DNA testing is the only sure way to determine if you have it or not. It easy easy to control and make beneficial use of your blood.