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MDS-CMML-1: Anyone dealing with pruritus (itching)?

Posted by madhornet @madhornet, Mar 21, 2024

I have been diagnosed with MDS-CMML-1 and am experiencing bad Pruritus (itching) in the mornings/evenings and after I shower. Does anyone have the same symptoms and any suggestions on a remedy?

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carolgk | @carolgk | Feb 21 4:05pm

Thank you for the suggestion.
I have tried Xanax and a few other medications. Did not work for me : (

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carolgk | @carolgk | Feb 22 8:25am
In reply to @samlupowitz "Yes. I have Myelofibrosis “and” Erdheim Chester Disease, and the first sign - although no doctor..." + (show)
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Yes. I have Myelofibrosis “and” Erdheim Chester Disease, and the first sign - although no doctor attributed it correctly at the time - was uncontrollable thoracic itching. It has since stopped, probably because the disease evolved into a later stage. But, what stopped my itching episodes almost instantly whenever they occurred was Xanax. Why? I don’t know. But, when you’re itching, and you want to jump from the roof to make it stop, you don’t care. Xanax does it. .25 mg per day is what I’m on now.

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@samlupowitz Thank you,
I have tried Xanax and other medications over the last 2+ years. None of those medications had any effect on me.

High Dose Steroids packs would stop the itch for about 10 days but that never lasted and is not sustainable. I did enjoy the breaks tremendously though.

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samlupowitz | @samlupowitz | Feb 22 11:40am
In reply to @carolgk "@samlupowitz Thank you, I have tried Xanax and other medications over the last 2+ years. None..." + (show)
Profile picture for carolgk @carolgk

@samlupowitz Thank you,
I have tried Xanax and other medications over the last 2+ years. None of those medications had any effect on me.

High Dose Steroids packs would stop the itch for about 10 days but that never lasted and is not sustainable. I did enjoy the breaks tremendously though.

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@carolgk I feel for you. Itching is maybe worse
than pain.

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carolgk | @carolgk | Feb 22 12:33pm
In reply to @samlupowitz "@carolgk I feel for you. Itching is maybe worse than pain." + (show)
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@carolgk I feel for you. Itching is maybe worse
than pain.

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@samlupowitz Thank you. I agree. With any luck, my new medication Vonjo will kick in any day now!

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mjc50 | @mj50 | Feb 22 6:56pm

I use Hydroxyzine 25mg up to three times per day as needed. It's a great drug. Stops the itching cold. Also, relaxes you a bit since it's has very mild anti-depressant activity

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carolgk | @carolgk | Mar 17 8:42am
In reply to @mj50 "I use Hydroxyzine 25mg up to three times per day as needed. It's a great drug...." + (show)
Profile picture for mjc50 @mj50

I use Hydroxyzine 25mg up to three times per day as needed. It's a great drug. Stops the itching cold. Also, relaxes you a bit since it's has very mild anti-depressant activity

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@mj50 Thank you. Unfortunately, Hyroxyzine had no effect on me, at higher doses as well.

VONJO has been amazing in many aspects. I had a GLORIOUS 5 day "break" in the itching between week 2 & 3 on Vonjo...that break is over now an the crazy, intense itching is back. I am coming up on one month on Vonjo. I am hoping and praying this medicaton provides further itching relief.
After almost 3 years of the itching, it bothers me more than the bone pain!

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