How to Manage Itching With Polycythemia Vera

“Itching is a common and often frustrating symptom of PV,” says Aaron Gerds, MD, a hematologist and oncologist at Cleveland Clinic in Ohio and a spokesperson for the American Society of Hematology. “In some patients, itching can become severe enough to interfere with sleep, exercise, and overall quality of life, even when there is no visible rash.”

PV-related itching can be challenging to manage, as there isn’t one standard treatment. It may take patience and experimentation to find what works, and require a multipronged approach including lifestyle measures, over-the-counter drugs, and prescription medicines.

Doctors don’t know exactly why PV makes you itch, but it’s believed to be a combination of things.

According to Rakesh Gaur, MD, MPH, a hematologist and oncologist with AdventHealth Shawnee Mission in Merriam, Kansas, these include:

• Certain blood and immune cells may become overactive and release chemicals that trigger itching.
• Having too many blood cells makes your blood thicker and can stretch blood vessels, irritating nerve endings.
• As water evaporates from wet skin, it cools quickly, which can stimulate nerve endings and trigger itching.
• Scratching releases more itch-related chemicals to keep the itch cycle going.

“PV can also cause a different skin sensation called erythromelalgia, which usually feels like burning or pain in the fingers or toes,” says Dr. Gaur. “It can happen when extra red blood cells and platelets contribute to tiny clots in very small blood vessels.”

“The most helpful first step is to learn your own triggers,” says Gaur. “Not every trigger affects every person, so paying attention to your whole health, including your body, daily habits, sleep, hydration, and emotional well-being, can help you and your care team find patterns.”

“Because triggers vary from person to person, keeping a symptom diary can sometimes help identify patterns,” says Dr. Gerds.

Once you’ve learned your itch triggers, you can try to avoid them. Gerds offers some other simple lifestyle measures that may help, including:

• Take cooler rather than hot showers or baths.
• Bathe less often.
• Pat skin dry instead of rubbing vigorously.
• Apply fragrance-free moisturizers immediately after bathing to prevent dry skin.
• Use gentle, unscented soaps and detergents.
• Wear loose-fitting, breathable clothing made from natural fibers when possible.
• Stay well hydrated.

“These may include processed meats, fermented cheese, wine, certain chocolates, and leftovers,” says Gaur. “Some people also report symptoms after foods such as spinach, tomatoes, avocados, citrus fruits, and eggplant.”

Talk to your doctor about whether you should try cutting out specific foods.

For mild symptoms that don’t improve with general lifestyle measures, over-the-counter (OTC) options may provide relief.

Gerds often recommends that patients start by using daily moisturizing creams and ointments designed for sensitive skin, or anti-itch lotions containing ingredients such as pramoxine and menthol, which are considered safe.

Other topical products that may help include:

• Calamine lotion
• Aloe vera gel
• Colloidal oatmeal products
• Ceramide-based creams
• Peppermint oil diluted in coconut oil (if your skin tolerates it)

“Non-sedating types such as cetirizine or loratadine can be used during the day, as well sedating diphenhydramine to be used at night — particularly if symptoms worsen at night or interfere with sleep,” says Gerds.

While it’s not yet clear how it works, Gerds says it may pre-activate a specific nerve receptor in the skin to desensitize it against itch triggers. “It is taken proactively before the trigger event, like a shower, or right when an itch flare-up begins,” he says.

You should discuss any new medication, even OTC products, with your healthcare team.

If lifestyle changes and OTC options aren’t sufficient, talk to your doctor about your symptoms. “Severe itching should not simply be accepted as part of living with polycythemia vera,” says Gerds. “Effective treatments are available.”

Treatments Targeting Underlying Disease

• Therapeutic phlebotomy (a controlled procedure that removes a specific amount of blood)
• Low-dose aspirin
• Hydroxyurea or interferon to slow red blood cell production
• Ruxolitinib (a JAK inhibitor that targets the cell communication pathway involved in PV)

“Prescription medicines can have significant side effects and risks, so they require careful monitoring by the care team,” says Gaur.

Additional Treatments for Itching

If the disease is under control but you still have itching, there are other options to consider:

• Phototherapy “This is a specialized light therapy that may be offered through a dermatologist for itching that does not improve with other approaches,” says Gaur.
• Antidepressants These medications can support sleep and address stress and anxiety. Selective serotonin reuptake inhibitors (SSRIs) such as paroxetine, fluoxetine, and sertraline have helped relieve itching in clinical trials.

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• Naltrexone Used to block the euphoric and sedative effects of opioids such as heroin, morphine, and codeine, it has been shown to relieve itching in various types of skin disorders.

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• Gabapentin or Pregabalin These medications are used to treat nerve pain, and also appear to help certain types of chronic itching. They’re most effective when the itching is nerve-related rather than caused by a skin condition.

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“When itching affects sleep, mood, or daily life, it is worth raising with your care team,” says Gaur. “Relief may come from a combination of PV treatment, skin care, sleep support, and practical changes that fit your life.”