Myelodysplastic syndrome (MDS) and skin itching

I think I finally found one that works. Cetaphil

Hi @littlebluebird I’m so sorry your mom is having the nasty itchiness associated with MDS. As you can see with some of the other replies in this discussion your mom isn’t alone in this and it’s super annoying. I didn’t have MDS, but another leukemia associated with it. The itching was relentless and showering only made it worse.

Like member @hlmcneely said in their reply, I also used Dove soap for sensitive skin and Aveeno oatmeal body wash. It helped only a little but even that was a relief. Another ointment that felt soothing was Burt’s Bees Baby Balm. It was oily so I wore cotton pajamas and had inexpensive sheets on the bed so I didn’t ruin the bedding.
The problem is, the itching comes from within and very few ointments or lotions can prevent the itching. From my understanding no one really knows why people with blood cancers tend to itch so much. There is some evidence that cancer cells may release chemicals that irritate your skin’s nerve endings. So there’s not much that can be done topically to change that.

It’s miserable to feel so itchy so I really empathize with your mom, and you, with trying to keep her comfortable. It also sounds like she is developing some neuropathy in her legs. Is your mom able to walk around to get exercise to keep her blood circulating?
What does her doctor say about the numbness?

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#:~:text=Myelodysplastic%20syndromes%20%28MDS%29%20are%20a%20group%20of%20bone,how%20the%20bone%20marrow%20creates%20healthy%20blood%20cells.
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/#:~:text=%22In%20general%2C%20antihistamines%20are%20safe%20in%20patients%20with,to%20the%20U.S.%20Food%20and%20Drug%20Administration%20%28FDA%29.
You mentioned you were diagnosed with MDS last year. Were you tested for any cell mutations? How often do you have bloodwork done?

I have heard that turmeric powder is good for inflammation. If the itchiness is due to inflammation, will it help? Anyone tried?

Hi @littlebluebird, I’d be very cautious with using turmeric powder to control itching. While turmeric/curcumin can be very beneficial for its anti-inflammatory properties the powder may cause an allergic reaction when people come into contact with it.
However, there are turmeric ointment preparations on the market that you may want to check out. If you have a natural health food/product store, pay a visit. Their staff members are usually well versed in what products they have that might be helpful.

But again if this is for controlling your mom’s overall itching from the side effects of MDS, I don’t know how much she’d be able to rub on that may or may cause side effects of its own.
My heart goes out to your mom for her pain and frustration with dealing with this incessant itching. I experienced severe itching with my AML diagnosis (similar to MDS). I hated the thought of jumping into the shower because I knew it would trigger another period of itching. Keeping the water lukewarm did help a little. Too hot or too cold seemed to make it worse. Claritin (not Claritin D) did seem to help (a little) when taken on a daily basis. Amazingly, when I started chemo, all the itching stopped.

Here’s a thought, has your mom tried drinking Golden Tea? It’s made with turmeric. There are recipes on line. However, turmeric can also be a blood thinner so definitely check with your mom’s oncology team to see if she can have that! I wasn’t able to have turmeric while in treatment for AML or my bone marrow transplant.
There are so many foods that are rich in antioxidants/anti-inflammatory properties. How’s your mom’s diet?

My mom is a 89 years old lady. We use to take shower for her with emulsifying ointment instead of soap and applied cream afterwards, we’d tried aveeeno, ceradan, suu balm, ceraphil or atoderm intensive gel-cream respectively. Ice pad is ok in summer but not in winter now. Distraction by warching tv, eating food or going outside can minimise the itchiness, but what about night time? If she can sleep well, everything 's fine but if can't, itchiness, numbness or pain will make her want to die. What I can do at nighttime is sweeping the itchy parts for her gently, otherwise she can scratch it severely and make it bleeding a lot. Now, many scratching wound's at the back of the neck. Cetirizine and hydroxyzine is used now but I don't think it works much. Paracetamol is given if she feels the lower limbs or other parts painful. She has osteoporosis and hunchback happen , it makes her feel tired easily and always back pain. Doctor said drug side effects and poor blood circulation was also the reasons of numbness. But she can only walk with assistance for not more than a minute.