What Causes Fatigue in MPN Patients?

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In this “Ask the Expert” segment featuring Dr. Brady Stein from Northwestern Medicine, MPN community member Marie wants to know, “What causes fatigue in patients with MPNs? What can be done about it?” Dr. Stein explains that this is a very common symptom, why this level of fatigue occurs in MPNs, and how one can cope with fatigue.

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Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

Susan Leclair:

I have a question that I think confuses, concerns, frustrates a lot of patients. They’re tired. And they go their physician, and they say they’re tired, or they’re severely fatigued. And nothing seems to happen, or it’s somehow you get the feeling that well, so am I. Everybody’s tired. Is there a fatigue that’s related to MPNs? How do you describe it in order to make it be in words what you’re feeling? 

Dr. Stein:

That’s an excellent question, and it’s a complicated question. But it’s one of the most common symptoms that a patient with MPN will experience. And I think this has been really nicely demonstrated by Dr. Mesa in some of the surveys of patients. And if you look at patients across the board at patients with ET, PV and especially myelofibrosis, one of the most commonly reported symptoms will be fatigue—almost universal in patients with myelofibrosis.

So what’s causing it? That’s also complicated, and in part it’s something very unfortunately natural or intrinsic to the disease. There are chemical messengers called cytokines that if we could measure, they can measure them in research settings but not in a clinical or a routine setting. But in academic or medical studies, these cytokine markers are very increased. And we think that they play a role in fatigue.

The way I describe it to a patient is that it’s almost as if their immune system is very active, and it feels like they’re constantly fighting the flu or battling the flu. It’s that type of washed-out sense of energy. So this could be whether a patient is newly diagnosed, whether they have a long course of their disease, whether they have a high-risk disease, whether they have a low-risk disease. This might be seen patients who are anemic, but it also can be seen in patients who have appropriate blood counts, normal blood counts. So common. And we think we have some explanation for it.

What do we do about it? That’s even trickier. How do you manage it? I’ll take the example of polycythemia vera where it’s very, very complicated. Very common part of the disease. But unfortunately as we treat polycythemia vera, one of the most common treatments will be phlebotomy. When we take blood off, we’re taking iron. And one of the most common symptoms of iron deficiency is fatigue. So it’s very tricky in that you have fatigue from your disease, you could have fatigue from your treatment, and then you’ve got fatigue from the normal stressors of life—work, family, all those different things that patients are managing and trying to balance. So it’s a complicated issue.

There are treatments that have been shown to improve fatigue. And this is more along the lines of the JAK inhibitors. It’s been shown that when patients fill out surveys, and they look at their fatigue at baseline, and then they track their fatigue over their treatment course, fatigue can improve as we modify some of these cytokine levels.

So it’s been shown in patients with polycythemia vera. It’s been shown in patients with myelofibrosis. So a complicated issue, and I think it’s an issue patients have always brought up with their MPNs. I don’t think this is necessarily new information. But it’s been very difficult for the physician to respond, because we haven’t had great approaches to manage fatigue. So I think we do have a new class of medications which might address that aspect of the symptom burden.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

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Page last updated on March 10, 2016