Hemochromatosis: How do you deal with extreme itchiness?

Thank You, Chris. I will discuss with the oncologist.

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

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

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

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.

My weird itching spells were the “only” symptom I had. My doctor said high iron can cause it and that’s how I found out my iron and transferrin were too high. This is VERY recent for me, so I do not have an official hemochromatosis diagnosis, but I do have one gene variant for hereditary hemochromatosis, so we are assuming that is what is happening for now until I can get in with a hematologist. I use creams as well and take as cold of showers as I can stand. I also noticed that anxiety or caffeine will make it worse. It starts in my hands or feet normally and spreads up my legs. If I can manage to not scratch it will go away. Scratching makes it so much worse. I hope your mom is doing well!

Thank you for your response and description of how you cope. We will try this.

I can only share my experiences with rashes, and tormenting itching. My cause is unknown, but may be similar to Grovers disease. I have tried numerous remedies to no avail. Tropicals, diet, cleansing products, too many to name. The only thing that helps is Triamcinolone cream, prescription applied 2-3 x daily. When I go into full blown body spread , the cream applied with cold wet wraps offers relief. Wet wraps are a white cotton t-shirt or leggings soaked in clean cold water...wrung out well, and put on over the cream. I'd then wear a robe over ,and wait about an hour. I have been prescribed meds to stop itching and get me to sleep.
Thankfully, I have not had anymore severe outbreaks for a few years. I do continue to get some spotty rashes, that the cream helps.
If you don't want to do all this, I suggest cold, very cold compresses. Also, I was told to take allergy pills, OTC.

I’m sorry to hear about your mom’s problems with itching. I’ve had some issues with itching as well, being newly diagnosed with hemochromatosis I never knew why I had so many rashes. I was always diagnosed with hives or the doctor suspected an allergic reaction. I do my phlebotomy every 54 days and it’s coming down, hoping to be able to stop soon or at least have a longer break. I just received test results back indicating another issue. Unsure if your mom has the same issue. I’m going to post results hoping it’s allowed on this site. I don’t know what these results mean but would like clarification if anyone has this issue along with the hemochromatosis or if it’s related in any way. My test results are as follows:
Elect Interp
Your Value
Indication: Monoclonal protein
Altered migration and/or decreased level of
alpha-1 antitrypsin(AAT):
The AT band exhibits altered migration
and/or quantitative AT levels are
decreased. This is suggestive of a variant
form of AT. AAT variants are genetically
determined and can be associated with lung
and liver injury. In view of the possible
clinical consequences and the implications
for family members, AT phenotype analysis
is suggested.
Has anyone had this with hemochromatosis or does it go along with having hemochromatosis?

SWhitman, allow me to bring some other members into the discussion who have experience with hemochromatosis like @dazlin @lclark918 @martymac and who may be able to offer their thoughts if they experienced itchiness and if lowering ferritin helped.

You'll noticed that I modified the title of your discussion to be more topic specific and added it to the Blood Disorders group as well here: https://connect.mayoclinic.org/group/blood-cancers-disorders/

I hope the steroid and Claritin help. It would be helpful to understand the underlying cause too.