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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I received relief when I finally saw my dermatologist who prescribed a script for an anti-itch cream AND who prescribed a strong anti -yeast cream. I use both when I get a flare-up.

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I have CMML/MF and have been dealing with itching for ten years. Jakafi works to some extent. Here’s what I do. First, eliminate anything else that might make you itch. I use All free and clear, no fabric softener or anything with scent. I shower with Bioderma Atoderm intensive (white bottle, blue gel) and right after I apply a LOT of jojoba oil (I like Cliganic). I have decided it’s not a histamine thing, it’s a nerve thing. I sleep with a white reusable ice bag. I keep it in a plastic trash can next to the bed so if I itch I can grab it and slap it on without getting up or turning on a light. Whatever you do, don’t scratch. It gets infinitely worse. You can fool the nerves by gently rubbing with your fingertips, also. There are scientific studies that have found that. Mine seems to flare whenever I change clothes. I tried a higher dose of Jakafi but that caused a lot of skin cancer. So I use ice—cheap and it works. Good luck.

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Profile picture for georgiagurl @georgiagurl

I received relief when I finally saw my dermatologist who prescribed a script for an anti-itch cream AND who prescribed a strong anti -yeast cream. I use both when I get a flare-up.

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@georgiagurl
Would you be willing to share what script your dermatologist prescribed?

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Profile picture for sme225 @sme225

I have CMML/MF and have been dealing with itching for ten years. Jakafi works to some extent. Here’s what I do. First, eliminate anything else that might make you itch. I use All free and clear, no fabric softener or anything with scent. I shower with Bioderma Atoderm intensive (white bottle, blue gel) and right after I apply a LOT of jojoba oil (I like Cliganic). I have decided it’s not a histamine thing, it’s a nerve thing. I sleep with a white reusable ice bag. I keep it in a plastic trash can next to the bed so if I itch I can grab it and slap it on without getting up or turning on a light. Whatever you do, don’t scratch. It gets infinitely worse. You can fool the nerves by gently rubbing with your fingertips, also. There are scientific studies that have found that. Mine seems to flare whenever I change clothes. I tried a higher dose of Jakafi but that caused a lot of skin cancer. So I use ice—cheap and it works. Good luck.

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@sme225 Thank you so much for that helpful information!! Do you have a diagnosis of Primary Cutaneous extra-nodal marginal zone B-Cell lymphoma? I had one isolated solitary tumour on my forehead which I had fully excised, 3 & a half years ago now, and was told no margins were left. This started as a red pin 📌 head which I thought was a spot. My dermatologist told me it was a Basal Cell Carcinoma but when the lab work came back unfortunately for me it WASN’T!

I do have itching at night now? Previous to that I had NO symptoms whatsoever and no itching.

Thank God I have had no other tumour since. However I have been told by my Haematologist that it is CHRONIC which I do find very upsetting.

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Profile picture for madhornet @madhornet

@georgiagurl
Would you be willing to share what script your dermatologist prescribed?

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@madhornet Yes, the itching script was: Hydrocortinsone cream USP 2.5% and the other for the yeast was: ketoconazole cream 2%. Hope this helps.

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Profile picture for steiner @steiner

@sme225 Thank you so much for that helpful information!! Do you have a diagnosis of Primary Cutaneous extra-nodal marginal zone B-Cell lymphoma? I had one isolated solitary tumour on my forehead which I had fully excised, 3 & a half years ago now, and was told no margins were left. This started as a red pin 📌 head which I thought was a spot. My dermatologist told me it was a Basal Cell Carcinoma but when the lab work came back unfortunately for me it WASN’T!

I do have itching at night now? Previous to that I had NO symptoms whatsoever and no itching.

Thank God I have had no other tumour since. However I have been told by my Haematologist that it is CHRONIC which I do find very upsetting.

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@steiner My skin cancer was basal cell and kept coming back because Jakafi encourages the cell growth. I was taking 15 mg and switched back to 10 mg and don’t have as much skin cancer with the lower dose.

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Thank you for sharing the scripts that helped lessen your itching.

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Profile picture for sme225 @sme225

@steiner My skin cancer was basal cell and kept coming back because Jakafi encourages the cell growth. I was taking 15 mg and switched back to 10 mg and don’t have as much skin cancer with the lower dose.

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@sme225 Thank you for telling me. What is Jakafi? I had thought previously to reading your post that if a Basal Cell Carcinoma was surgically removed/excised it would never come back………

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Profile picture for steiner @steiner

@sme225 Thank you for telling me. What is Jakafi? I had thought previously to reading your post that if a Basal Cell Carcinoma was surgically removed/excised it would never come back………

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@steiner Jakafi is the drug I take for CMML and myelofibrosis. The cancers were separate. Each time one was removed it was tested to be sure they got all of it. I just kept getting more. Had three removed from my hand in eight months. Haven’t had any more for almost a year after lowering the dosage. I’m 76 so a lot of sun damage.

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Profile picture for sme225 @sme225

@steiner Jakafi is the drug I take for CMML and myelofibrosis. The cancers were separate. Each time one was removed it was tested to be sure they got all of it. I just kept getting more. Had three removed from my hand in eight months. Haven’t had any more for almost a year after lowering the dosage. I’m 76 so a lot of sun damage.

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@sme225 I’m so sorry to hear that you had 3 on your hand in 8 months, oh my goodness that must have been incredibly stressful. Please God you won’t have any more again. I sometimes wonder why these things happen…… it’s just not fair, is it? I’m going back to my Dermatologist in December 2025 about a periungal flat wart type growth at the top of my thumb (beside the nail). I’ve had it for about a year now but it hasn’t cleared up. With my past PCMZL B-Cell diagnosis I must have this growth checked out now. I’m 66 and want to return to work. I will remember you in my prayers.

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