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What Women with MPNs Need to Know

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Published on December 17, 2020

Doctor Shares Advice for Women with MPNs

Does gender affect the way that MPNs present? In some ways yes — and in other ways, no! In this segment of Answers Now: Facing MPNs, an expert and MPN patient advocate will cover everything women with MPNs need to know and offer helpful advice. This includes cutting-edge research into sex and MPNs, guidance for building your care team, a discussion of whether or not women are more likely to develop certain MPNs, and considerations for reproductive health. 

Host and patient advocate Ruth Fein is joined Dr. Ellen Ritchie, MD, Assistant Professor of Medicine and member of the Leukemia Program at Weill Cornell Medical College of Cornell University, to discuss these topics and more.

This program is sponsored by Incyte and is produced in partnership with the MPNRF. This organization has no editorial control. It is produced by Patient Power. Patient Power is solely responsible for program content.


Transcript | What Women with MPNs Need to Know

Ruth Fein: Hi, I'm Ruth Fein. I'm a health writer and a patient advocate, and your host today with this installment of our series Answers Now: Facing MPNs. And I'm especially glad to be back today because we're talking to Ellen Ritchie, Dr. Ellen Ritchie who is an Associate Professor of Clinical Medicine at Weill Cornell Medical Center in New York. And we're talking about women and MPNs, that 51 percent. Hello, Dr. Ritchie, first of all.

Dr. Ritchie: Hello.

Ruth Fein: Full disclosure, Dr. Ritchie is not just an amazing MPN specialist. She happens to be my own MPN superstar practitioner. Dr. Ritchie, are there differences in how MPNs present in women?

Are There Differences in How MPNs Present in Women?

Dr. Ritchie: Not really. I mean, I would say that many of my ET patients who are women it's just found because they go for a regular exam. I would say one difference between men and women is women may tend to go more regularly to a regular doctor and get blood tests and potentially, they're going to their gynecologist or they're going to their regular general medicine physician.

Ruth Fein: There's obviously special considerations for female MPN patients. Does a woman's menstrual cycle affect her MPN at all?

Can A Woman’s Menstrual Cycle Have Effects on an MPN?

Dr. Ritchie: I think the only thing that may be confounding is that women who have regular menstrual cycles may become iron deficient. And when they're iron deficient, for example, if they have polycythemia vera and they're iron deficient it may not be that their hemoglobin is elevated, but they may be JAK2 positive, for example, and may have difficulties or problems with thrombosis or with pregnancies which don't make it to completion.

So, there can be sort of masked-PV that occurs in women who have regular menstrual cycles. It also can be a problem, women with ET who developed severe iron deficiency because they have regular menstrual cycles, iron deficiency all by itself can cause a platelet count to rise. So, platelet count can be high on the basis of iron deficiency, and if you have ET too, it can be even higher than you would expect. So, there are funny things that happen with regard to your menstrual cycle and the diagnosis of ET or of polycythemia vera.

Ruth Fein: Could you speak to that a little bit for women of childbearing age, what's the relationship to birth control and even how their blood disorder interacts with all kinds of medications?

How Does Birth Control or Other Hormonal Medications Impact MPNs?

Dr. Ritchie: Well, birth control pills are hormonal pills, and even all by themselves they are thrombogenic. So it is not recommended for people who have an increased risk of thrombosis to be on birth control pills. And that could be either inherited risk of thrombosis, or it can be having a disease like PV or ET. It can be cardiovascular risk, is not a good risk factors to have and be on birth control pills.

So, birth control is sort of contraindicated in patients who have polycythemia vera and ET because it will increase the risk of blood clots. They're rather unique, any hormonal medications can do that. In menopausal patients, we also worry about estrogen replacement in patients who have PV or ET because that too can be thrombogenic and cause blood clots. So we're very careful about the use of birth control in patients who have a myeloproliferative disease.

Ruth Fein: Is there a difference between men and women with thrombosis, and does it matter what condition you have?

Is There a Difference Between Men and Women with Thrombosis?

Dr. Ritchie: Both polycythemia vera and ET can cause a greater risk of thrombosis, and that's for both men and women. So it's an extra risk factor for developing a blood clot. And that is complicated by other risk factors that you might have for thrombosis. So, whether you're a man or a woman, if you have cardiovascular risk factors such as older age, high blood pressure, diabetes, or high cholesterol, any of those factors together with a myeloproliferative disease puts you at higher risk of thrombosis. Whether you're a man or a woman.

Women undergo pregnancy, and pregnancy is a thrombotic activity. So that women do have a higher risk, particularly during pregnancy developing thrombosis. And that's why pregnant women who have MPNs we treat very carefully because we're concerned about the risk of blood clots.

Ruth Fein: How difficult is it for a woman to find a GYN who's actually literate in MPNs?

Why Should MPN Patients Consult a High-Risk OB-GYN?

Dr. Ritchie: Well, first of all, if you are an MPN patient and you're thinking about having a baby, you need to be followed by a high-risk OB-GYN. You can't be followed by a regular OB-GYN because you're definitely at higher risk of losing the baby, particularly in the second trimester, and of having complications such as thrombosis. It's also really important that you have a hematologist who's going to talk to your high-risk OB.

It's really important that there can be a conversation between them because there'll be a lot of questions that need to be answered during the course of your pregnancy as to management of your MPN, and potentially management of the health of your baby. So it's really important that you have a team that will support you during your pregnancy. So, for example, I work regularly with a number of high-risk OBs and we talk about our patients and how we're going to manage particular circumstances.

Ruth Fein: We actually have someone in our Patient Power community who just gave birth last week and she happens to have PV, but what should she look at now postpartum?

What Should Postpartum MPN Patients Watch For?

Dr. Ritchie: Yeah, I think it's again keeping in good contact with the team that took care of you. Your risk of thrombosis is not gone just because you've had the baby, so continue to be vigilant and to take your medications as prescribed. Breastfeeding is, depending on what medications you're taking can be contraindicated or it would be okay. So, it's something that you really need to talk about with both your hematologist and with your OB.

If you're taking hydroxyurea (Hydrea) after pregnancy because your counts were very high, you shouldn't breastfeed. So that's something that you need to discuss with your OB-GYN. It's important that you have a dialogue that's open. The other thing that I'm concerned about always post-pregnancy in my patients is that there is an indication that patients with myeloproliferative diseases may have more problems with depression than patients who don't.

Ruth Fein: Let's go back and let's talk about heart disease for a minute. I know that you speak at least once a year on women with MPNs and heart disease. And I don't know really - what is our increased risk?

Are Women with MPNs at Increased Risk for Heart Disease?

Dr. Ritchie: Well, heart disease or cardiac symptoms present differently often in women as opposed to men. So women can have different symptoms that might be related to a heart attack than men do. And that's always been a problem through the history of medicine, actually differentiating women who are having a cardiac issue for men, and women have been overlooked really until recently in a lot of the cardiovascular explorations and research trials that occurred in the past.

I think that it's really important if you have a myeloproliferative disease check, decrease, every risk factor that you might have for thrombosis, and cardiovascular risk factors are the ones that you can most easily work on. You can't do anything to change age, but you can maintain a normal blood pressure and use medications that you need to do so. You can choose to use an active lifestyle or have an active lifestyle and to eat a healthy diet. You can take medications to lower your cholesterol if that's what's needed.

And if you're a diabetic you need to take special care to control your diabetes in order to decrease your risk of thrombosis. So, it's really important that you modify whatever risk factors there are for you to decrease your risk of thrombosis, and their cardiovascular risk factors are the ones that are the most important I think to work on. And the worst outcome that our patients can have is a heart attack or a stroke. And we really try and prevent that in our patients.

Ruth Fein: What about the symptoms of menopause? So many of them are the same as what we call symptoms for MPNs, the night sweats and the fatigue, and cramping, leg cramping, all kinds of things. Does that overlap and make it more difficult for patients to identify symptoms?

Can Symptoms of Menopause and MPNs Overlap?

Dr. Ritchie: Well, it can because the symptoms of menopause are actually very similar. And if you have hot flashes from your MPN and you're getting hot flashes from your menopause, then you're a pretty uncomfortable person. That's for sure. I think that it's interesting that in some of the data which has been collected by Incyte in a couple of their clinical trials, it's been reported in their [inaudible] trial and in their REVEAL trial that women tend to have more symptoms from their MPNs than men do when they're surveyed.

But I think part of that is because women have other things going on which exacerbate those symptoms such as menopause, so that if you're menopausal and you have an MPN, you're going to have symptoms from both those things. And you may attribute it on your questionnaire to your MPN, but it's probably a combination of both. And I think that's one reason why women report more symptoms than men do.

Ruth Fein: Since women suffer more from osteoporosis, does treatment for osteoporosis conflict with having an MPN or being treated for an MPN? And which osteoporosis treatments are best for MPN patients?

Does Osteoporosis Treatment Conflict with MPN Treatment?

Dr. Ritchie: Well, that becomes a more complicated question. That MPNs, depending on the MPN that you have, particularly, if you have primary myelofibrosis, you can develop another disorder of the bone which is sclerosis of the bone. It's not osteoporosis, it's something a little bit different. And there was a Swedish study actually recently reported looking at MPN patients, particularly those with myelofibrosis, where they had a higher rate of fracture than patients who did not have MPNs.

Ruth Fein: Thank you for that explanation. We're going to wrap up. Dr. Ritchie, before we do, do you have any parting thoughts for our audience?

Dr. Ritchie: The MPN patients are a special group of patients with a rare disease. And one of the things I really admire about them is that many have come together as a group to sort of raise awareness about this disease and to advocate really for better therapies and treatments. And I think that as a patient community, the MPN patients should be very proud of themselves for pulling together and creating such a connected community that is having an impact on the development of drugs and treatment.

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