Hemochromatosis: How do you deal with extreme itchiness?

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.

Good evening. Welcome to Connect and Happy New Year.
When I read your very recent post while I was browsing this evening, I sat up straight and read it a second time. I could have written that about 18 months ago. That was just before my first injection of Dupixent. After about four years of going through what you have described, I was getting worse and worse. I don't think everyone knows how itching can take over and leave you destroyed, disabled, and particularly exhausted.

One day my dermatologist introduced me to Dupixent for my "neuropathic itch". I knew the worst of the itches was coming from inside my body. We had taken care of some of the atopic dermatitis effects with known ointments, a complete cleansing of bedding, and clothing, and endless applications of light therapy. But the interior itch.....just literally knocked me out. I would be huddled on the floor unable to stay alert or retain my composure.

It took some time to get the Dupixent prescription approved and then the day arrived on August 13, 2022. After the self-injection, I tried to relax and wait for the desired absence of the "itch". Since that day I can honestly say, I have never had to deal with either interior or exterior itch.

However, I did not have CLL so do not know if Dupixent would work the same way for you.
You can call the company and talk to a patient assistant at 844 387-4936 from 8 a.m. to 8 p.m.
It is certainly worth checking out. Please let me know if you need assistance of any kind. I would appreciate hearing about your experience.

May you be safe, protected, and free from inner and outer harm.
Chris

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.

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 have read your above posts in an attempt to find help for my husband who has relentless itching and bumps with open sores on his lower body that is starting to spread higher. He has tried similar ways to soothe himself except for the Triamcinlone. He uses Bethamethasone which was prescribed by an allergist after his dermatologist offered no help.
His iron and ferritin is normal so we assume he does not have hemochromatosis but he is now consulting with a hematologist oncologist pending the doctor's diagnosis and a genetic blood test. The consult was prompted by blood tests indicating low platelets, red blood cells, hemoglobin, hematocrit, eosinophils and high RDW SD.
The hema/onc doctor does not offer any help for the itching and does not connect the itching with his blood problems. The dermatologist and allergist have labelled his skin problem as eczema and have not offered much help with the itching and do not connect his blood problems to the skin. None of these doctors consult together (which is not surprising but certainly concerning to me).
My husband is a very active healthy 80 year old and he only escapes the itching if he becomes totally absorbed in mental or physical activities during the day and he does well with this. However, after 5pm, his awareness of these terrible itches start and he is having a hard time sleeping.
He is very disciplined in seeking ways to help minimize his discomfort but it appears he is getting worse. This past weekend, he noticed that if anything rubs against him (like his water bottle or backpack), the bumps come out and itches start. All seating is now covered with clean cotton sheets to minimize abrasions and he is going through his clothes to wear only baggy natural fibers.
I'll check back to this link to see if there are additional suggestions in the future of reducing the sores and itching. We are very concerned that the bumps that are opening and becoming sore will become open to infection. Gasp! I wish you all better days.

@swhitman410 It is really nice that you are trying to help your Mom deal with her health issues. The itching she is having is very common with hemochromatosis. She should mention it to her doctor if she hasn't already. If the over the counter creams she is using aren't enough they may be able to prescribe something more effective.

How long has she been getting treated?
Sue

Ugh, I have itch cause by water contact and with change in temperature…I also have other symptoms that are now under control but the itch persists. The only thing that helps is a otc amino acid supplement that is typically used as a preworkout supplement, Beta Alanine. I buy the NOW brand on Amazon and take 750mg every four hours as needed…been taking for 5 plus years and it works beautifully…cost is about $20…and ma6 be worth a try…
Two Stanford Dermatologists read about this blog and tried this with a patient and it worked for him…I hope this might just be relief for your husband…
https://stanfordhealthcare.org/publications/798/798771.html