Hemochromatosis: How do you deal with extreme itchiness?

I have CLL, diagnosed in 2015. This August in 2023 I developed a rash that covers my entire body. My oncologist sent me to a dermatologist. I have used prescription creams, pills, steroids and nothing has worked. I am now being treated with light therapy still no relief. I am unable to sleep because of the itching. The quality of my life has significantly changed. I am desperate to find help. Any and all suggestions are appreciated. I read that CLL can cause rashes but my oncologist never told me that. Anyone else know about that?
Thank you. Mark

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

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