Itchy skin, also known as pruritus, is one of the most common symptoms of myeloproliferative neoplasms (MPNs). The three main types of MPNs are essential thrombocythemia (ET), polycythemia vera (PV), and primary myelofibrosis (MF or PMF). In one study involving 1,179 people with MPNs, researchers found that itching was reported by 53 percent of participants, including:
MPNs are a family of chronic blood cancers in which the overproduction of blood stem cells in the bone marrow leads to common MPN symptoms, such as itching, bone pain, headaches, night sweats, and fatigue.
Members of myMPNteam share their struggles with itching. "My right hip area drives me nuts," a myMPNteam member wrote. “The itching is unbearable sometimes,” another member posted. “I've been taking an allergy pill twice a day, and it seems to help.”
To learn more about itchy skin and MPNs, myMPNteam talked with Dr. Gabriela Hobbs, a leukemia specialist at Massachusetts General Hospital. Dr. Hobbs’ clinical and research interests include the treatment of people with myeloproliferative neoplasms.
Itching in MPNs is believed to be caused by abnormal cells releasing large amounts of histamine and cytokines, two types of molecules that promote inflammation and itching.
Dr. Hobbs confirmed that itchiness is prevalent in people with MPNs. She said it's sometimes under-reported because people may be embarrassed by it or believe that it's trivial and not worth bringing up.
“It is a real symptom,” she said. “It can be very debilitating in terms of affecting patients’ quality of life.”
According to a 2010 review of studies on people with PV-associated pruritus, their itching is generalized and often occurs after bathing or swimming. Itching after being immersed in water is known as aquagenic pruritus (AP). Some reported that the itching is less frequent if they use cold water for bathing, and advised against hot baths or hot showers.
Itching can also be triggered by alcohol consumption, being near a fire, sudden temperature changes, sweating, or wearing overly warm clothes to bed. For some people, itching is present on an ongoing basis and may be idiopathic — occurring for no apparent reason.
In the 2010 review, it was found that one-third of people with polycythemia vera and idiopathic AP had a family history of itching caused by water contact. Itching was caused by heat in approximately 30 percent of people and by cold in roughly 35 percent of people.
Cold weather or seasonal changes are known to trigger itching in some people, especially when they promote dry skin. “If patients live in an area with cold weather, they can experience a lot of dry skin, which can worsen itching related to an underlying MPN,” Dr. Hobbs said.
Itchy skin in MPNs can sometimes result from thyroid disease or iron deficiency. Even something as simple as changing from one type of soap to another can cause flare-ups.
While MPN-related pruritus can be very frustrating, Dr. Hobbs said there are many ways to address it. Frequent use of moisturizer or other emollients can be helpful, particularly when the moisturizing product is chilled in the refrigerator first.
Some people with MPNs minimize their exposure to water, since it is a trigger for itching. They use baby wipes to clean or use a bidet instead of taking a full bath or shower. Others recommend staying hydrated, exercising, and getting sunshine.
If lifestyle changes and topical products like lotions don’t relieve itchy skin, Dr. Hobbs said there are medicines that may do the trick instead. She explained that over-the-counter antihistamines — anti-allergy pills such as Claritin, Zyrtec, or Allegra — may be helpful.
If itching or other symptoms of MPNs become problematic, it may be time to begin treating the MPN. “Medications that lower abnormal blood counts in MPNs, like Hydroxyurea to a certain degree, can be helpful for that,” said Dr. Hobbs.
Dr. Hobbs specifically recommended Jakafi (Ruxolitinib), which she said had successfully managed itching symptoms for many people. However, she advised against rushing to use it as the first line of defense.
“It shouldn't be the first drug that's used for every single patient,” Dr. Hobbs said. “But if a good effort has been made to try other medications to treat the MPN — such as Hydroxyurea for PV patients, moisturizers, and antihistamines — and it's not working, then Jakafi is really an excellent medication. Jakafi is approved in first-line treatments for MF patients, but it's not approved to be used first in PV patients, so Hydrea generally needs to be tried first.”
People with itchy skin related to MPNs should keep open lines of communication with their doctors. Dr. Hobbs said that, in her experience, the best way to start is by filling out the myeloproliferative neoplasms symptom assessment form (MPN-SAF) and sharing the results with your doctor.
“Like any form, it has its limitations, but at least it reminds the doctor that there are all these symptoms that are really specific to MPN, like itching,” she said. She recommended people with MPNs consult the MPN-SAF on their own as well. ”It's a really easy 10-point questionnaire, and it helps the health care providers and patients to keep track of symptoms over time in a more objective way.”
After filling out the form, Dr. Hobbs said people have an easier time zeroing in on their symptoms and the possible causes. She also said she uses the MPN-SAF to make sure treatments are working.
“We can look at blood counts from a year ago, two years ago, five years ago, and get a trend and be very specific,” Dr. Hobbs said. “But with symptoms, it's a little bit harder, because they’re subjective. So it's hard to remember what I felt like yesterday, let alone like five years ago.”
Dr. Hobbs encouraged the use of the MPN-SAF as a way to track symptoms and to help people actively participate in their care. She said when people take a more substantial interest in their condition, they gain the added dimension of understanding what their bodies are experiencing.
You can download a copy of the MPN-SAF.
Members of myMPNteam often share their challenges with itching and other MPN symptoms, as well as tips for what helps. "It's nice to talk with someone who is going through the same thing," one myMPNteam member said.
By joining myMPNteam, the social network and online community for those living with myeloproliferative neoplasms, you gain a support group of others who are living with these rare blood cancers. Itchy skin is one of the most discussed topics.
Here are some discussion threads on myMPNteam about itchy skin:
How does itchy skin affect your daily life? Has your doctor found the right treatment options to manage it? Share your tips and experiences in a comment below or post on myMPNteam.