← Return to Myelodysplastic syndrome (MDS) and skin itching

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@littlebluebird

My mom got MDS since 5/2024, normal RBC, very high WBC, over 100, and very low platelets, below 15 . Because of poor tolerance to azacitidne, she's now on supportive treatment only, i.e. on oral hydroxyrea, regular blood taking and platelets transfusion if platelets below 10. She is now in stable condition , but itchiness of back, neck and scalp most irritating her especially at night even 2 anti-histamine drugs used and many different creams tried prescribed by doctor. Numbness of both legs also made her in low mood condition. What can I do now?

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Replies to "My mom got MDS since 5/2024, normal RBC, very high WBC, over 100, and very low..."

Hi @littlebluebird I’m so sorry your mom is having the nasty itchiness associated with MDS. As you can see with some of the other replies in this discussion your mom isn’t alone in this and it’s super annoying. I didn’t have MDS, but another leukemia associated with it. The itching was relentless and showering only made it worse.

Like member @hlmcneely said in their reply, I also used Dove soap for sensitive skin and Aveeno oatmeal body wash. It helped only a little but even that was a relief. Another ointment that felt soothing was Burt’s Bees Baby Balm. It was oily so I wore cotton pajamas and had inexpensive sheets on the bed so I didn’t ruin the bedding.
The problem is, the itching comes from within and very few ointments or lotions can prevent the itching. From my understanding no one really knows why people with blood cancers tend to itch so much. There is some evidence that cancer cells may release chemicals that irritate your skin’s nerve endings. So there’s not much that can be done topically to change that.

It’s miserable to feel so itchy so I really empathize with your mom, and you, with trying to keep her comfortable. It also sounds like she is developing some neuropathy in her legs. Is your mom able to walk around to get exercise to keep her blood circulating?
What does her doctor say about the numbness?