Myelodysplastic syndrome (MDS) and skin itching

Posted by lithuanian @lithuanian, Jan 20, 2019

what can be done for extreme itching from myelodysplasia

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Profile picture for tascamman @twitt1949

I've just been diagnosed with MDS. Is skin itching part of MDS?

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@twitt1949, I moved your question about MDS and skin itching to this existing discussion where you can connect with others.
- Myelodysplastic syndrome (MDS) and skin itching
https://connect.mayoclinic.org/discussion/myelodysplasia-and-skin-itching/

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Hi! Nancy here in Virginia.
Re: MDS AND ITCHING
i am on Inqovi every month, having transfusions mostly twice a week, and have MDS. All three cause itching and doctor can’t say which is causing mine. The only things I have found that helps are low dose of gabapentin 3x a day and 25 mg of hydroxyzine at nite which also helps at night. Anyone have anything better?

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Profile picture for Lori, Volunteer Mentor @loribmt

Hi @emaddox Relentless itching is the worst, isn’t it? I can tolerate pain over itching any day. Unfortunately, itching can be a common side effect of having a blood cancer/blood conditions due to inflammation, which can trigger an immune response to release more histamines…causing itching.

In your case, you were diagnosed Myelodysplastic syndromes (MDS) which are a group of bone marrow diseases. I’ve posted a link below with a pretty good article explaining MDS.
This condition may be the culprit in your itching and you were on the right track with taking an antihistamine. I had to use them daily for a while. My hematologist suggested Claritin. (Avoid any that have a decongestant because that can raise BP) There are a number of over the counter antihistamines that work to quell the itch.
You will need to check with your ophthalmologist to see which antihistamines are safe for you but from my understanding, phenylephrine can be the culprit for elevating eye pressure because it can act as a vasoconstrictor. So avoiding products with that ingredient might be helpful. Again, check with your eye doctor.

Here’s the link for MDS
https://www.verywellhealth.com/what-are-myelodysplastic-syndromes-mds-2252548.
Another useful article as to why cancer can cause itchy skin.
When Is Itchy Skin a Cancer Symptom?
https://www.verywellhealth.com/is-itchy-skin-a-cancer-symptom-4582580
~Allergy meds:
https://www.everydayhealth.com/news/allergy-medicines-can-harmful-your-heart/.
You mentioned you were diagnosed with MDS last year. Were you tested for any cell mutations? How often do you have bloodwork done?

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Antihistamines are fine if you don’t also have dry mouth, which I do.. nancy

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Profile picture for lithuanian @lithuanian

I get Procrit shots for my myelodysplastic syndrome which help a lot, BUT I'm also having terrible itching on very dry skin areas which is very difficult to live with. My doc has given me prednisone but I had a bad reaction to it. Oh how I wish I could take something that would relieve it some.

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Try gabapentin and/ hydroxyzine which also helps with insomnia. With your doctor’s approval of course

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Profile picture for nancytrudeau @nancytrudeau

Antihistamines are fine if you don’t also have dry mouth, which I do.. nancy

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@nancytrudeau. You’re so right, antihistamines can dry up more than a runny nose or relieve itching. Sorry to see you suffer from a dry mouth along with the itching from your MDS.
Dry mouth can be caused by underlying illnesses but also medications. While not permanent fixes there are a number of products on the market that can relieve the worst of the symptoms. There are a bunch of discussions in the forum regarding the remedies for dry mouth. Here is one link to get you started. Below that I posted a link to the full search.

Dry Mouth Remedies
https://connect.mayoclinic.org/discussion/dry-mouth-remedies/
~The search results for Dry Mouth Remedies. https://connect.mayoclinic.org/search/

Since you’re new to Connect let me welcome you to the forum. We have a very active and supportive MDS support group with members sharing their experiences.
This link will show the MDS discussions where you can feel free to jump into any conversation.
https://connect.mayoclinic.org/search/
How long ago were you diagnosed with MDS?

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