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Living with MDS (Myelodyplastic Syndromes)

Blood Cancers & Disorders | Last Active: 21 hours ago | Replies (168)
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@jacklyn

I have been diagnosed with MDS 2016. Now I have been diagnosed with CMML. 3 yrs ago. I have taken hydroxyurea for an increase in my white cell count. They were up to 70. And the hydyoxyurea brought them
Down to normal. Last week I had another bone marrow byopsy last week because my white cell count went up
Again to 75. Also my spleen is very enlarged so
I have had nausea. I am 77 and have problems with digesting. My worry is recently l have had itching. It started with a few hives but now it’s like I itch all over especially at night. I read it could be Puritis and there is no cure for that. I am hoping the hydroxurea will shrink my spleen and lower my white cell count and take away the itching. I take 1000mg if hydroxy a day Monday to Friday and 500mg on the weekend. On my second week where she upted the dosage. Is there anyone else who
Has suffered with this itching.

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Replies to "I have been diagnosed with MDS 2016. Now I have been diagnosed with CMML. 3 yrs..."
Lori, Volunteer Mentor | @loribmt | 2 days ago

Good morning, @jacklyn. Itching…I swear that can be worse than pain. Unfortunately it’s a lovely side benefit of some blood diseases…sarcasm duly noted. I had AML and got to the point where I could barely tolerate showers…before and during treatment. So you have my deepest empathy.

You’re not alone in this…though I know ‘misery loves company’ it doesn’t cure the itch! I found this discussion for you posted by @madhornet, who also has CMML and dealing with itching!
MDS-CMML-1: Anyone dealing with pruritus (itching)? https://connect.mayoclinic.org/discussion/mds-cmml-1-information/

Hopefully you’ll find some helpful information in the conversation. Did your itching become worse when your HU dosage was increased?

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