She has been being treated for about a year, however she moved states to be closer to me. Her new doctor doing her phlebotomies doesn't really consider her itchiness part of her hemochromatosis but he has ordered a steroid and Claritin that we will start today. I was just wanting to know if others have had the itchiness and did lowering the ferritin help at all? Thanks for replying to my message.

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.