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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Colleen Young, Connect Director | @colleenyoung | May 13 6:10pm

In reply to @garyebecker "We've tried benadryl, codizone, hydroxide and he still ends up scratching until he bleeds. He's on..." + (show)

@garyebecker, did you see the reply from @brundage006 with their tips?

jerrlin | @jerrlin | May 14 7:39am

I had severe itching until they gave me Jakafi. Absolute miracle drug for me. No itching, b. I can shower, swim etc

gigi05 | @gigi05 | May 15 9:58am

In reply to @garyebecker "We've tried benadryl, codizone, hydroxide and he still ends up scratching until he bleeds. He's on..." + (show)

Several readers have mentioned that cool or cooler water helps with itching after showers. Others have mentioned the use of peppermint. I am trained as a clinical aromatherapist and I can recommend peppermint essential oil, diluted in say jojoba oil, or another soothing natural oil that works with his skin. Peppermint EO is cooling, as well as pain relieving. It's fragrance also lifts the spirit and helps with focus. I always recommend buying organic lotions and essential oils for quality, purity, and sustainability. Your skin is also your largest organ, so who needs more toxins absorbed into their body! I would love to hear back once you have tried it. Or, what you have tried in the mean time and what worked.

gregorydines | @gregorydines | May 15 1:42pm

After being prescribed Jakafi I have no more itching. It took about 30 days before itching totally stopped. Jakafi has been a miracle drug for me.

jerrlin | @jerrlin | May 15 6:29pm

In reply to @gigi05 "Several readers have mentioned that cool or cooler water helps with itching after showers. Others have..." + (show)

I tried all of that and nothing worked for me. Just the Jakafi

et1055 | @et1055 | Nov 2 1:14am

In reply to @garyebecker "We've tried benadryl, codizone, hydroxide and he still ends up scratching until he bleeds. He's on..." + (show)

@garyebecker
I resort to ice packs when the itching gets out of control. I take a 24 hour antihistamine and a Benadryl at night.

docheat72 | @docheat72 | Nov 2 12:47pm

In reply to @et1055 "@garyebecker I resort to ice packs when the itching gets out of control. I take a..." + (show)

@et1055 I have had it off and on but cant take benadryl.

rogelling | @rogelling | Nov 3 11:00am

This type of itching is poorly responsive to antihistamines because the itching is not due to histamine release. Sedating antihistamines help by sedating. I had much better luck with SSRI for intractable itching.

jacklyn | @jacklyn | Nov 3 6:24pm

I had the itching tesllly bad and took loratadine which eventually kicked in. I was on allopurinol when I started chemo infusions and when my doctor stopped it after cycle 1 I had no more itching. Check all the medication you are taking as well. I had MDS for years a watch and see and then it turned into CMmL and then I was borderline AMl. That is why I am doing the 7+3 Chemo infusions and take a chemo pill. I am on vidaza and ventoclax. To try and put it in remission. I am 77 and can’t have a transplant.

joanmroby | @joanmroby | Nov 3 11:49pm

In reply to @et1055 "@garyebecker I resort to ice packs when the itching gets out of control. I take a..." + (show)

I’ve heard of coconut lotion helping

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