We've all had bug bites, or dry scalp, or a sunburn that causes itch. But what if you felt itchy all the time — and there was no relief? Atlantic journalist Annie Lowrey suffers from primary biliary cholangitis (PBC), a degenerative liver disease in which the body mistakenly attacks cells lining the bile ducts, causing them to inflame. The result is a severe itch that doesn't respond to antihistamines or steroids. She talks with Terry Gross about finding a diagnosis, treatment, and what scientists know about itch.Learn more about sponsor message choices: podcastchoices.com/adchoicesNPR Privacy Policy
Chapter 1: What causes chronic itch?
This is Fresh Air. I'm Terry Gross. Stress and anxiety can lead to itch. So I would imagine a lot of Americans have done a lot of scratching over the past few months. There's the kind of itch that you scratch and poof, no more itch. But sometimes, the more you scratch, the more you itch.
And then there's the kind of itch that is so alive, explosive, persistent, and all-encompassing that nothing seems to help. And it hijacks your brain. That's the kind of itch that my guest Annie Lowry writes about in her Atlantic Magazine article titled Why People Itch and How to Stop It. It's about what researchers are learning about itch and how that's opening the door to new treatments.
Lowry suffers from itch so intense she's dug holes in her skin and scalp and once asked a surgeon to amputate her limbs. Her issue is related to a rare and degenerative liver disease. Part of her article is about her own itch and the extremes it's led her to. Lowry is a staff writer at The Atlantic, focusing on the economy and politics.
She's a former staff writer at The New York Times and New York Magazine. Annie Lowry, welcome to Fresh Air. Is today an itchy day for you?
It is. I have been itchy for about four days now. So we're talking during the daytime, so I'm not terribly itchy. But my feet are itchy, my scalp is itchy, and my hands are itchy. But it's a two out of ten. It's manageable.
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Chapter 2: What does it feel like to experience severe itching?
So people are very dismissive of itch. And I want you to describe what your kind of itch feels like.
At its worst, it was like having poison ivy in the acute phase of poison ivy, although my skin didn't show anything. There was no rash or anything like that. And it was completely maddening. It was impossible to do anything other than focus on scratching or trying to find relief from the itching. And the type of itching that I have is not sensitive to the medications that we have that normally...
turn the itching dial down. So the two big ones being steroids and antihistamines. And it just became all encompassing. I would spend hours in cold baths. I would walk to try to get rid of the itch. It was most intense. I've been pregnant twice. I have two kids. And at the end of one pregnancy, I asked my my surgeons, I was like, if this doesn't stop, I don't want these limbs on my body anymore.
It was really debilitating. And I'm not like that all the time. And in fact, the itching has never been quite as severe as it was in my pregnancies. Now the itching is much calmer, although it is persistent, but it comes and goes. At its worst, it's really, you know, just like pain is debilitating, itch is debilitating.
Okay, so you mentioned that you were especially itchy on the bottom of your feet, your hands, and your scalp. Are those, if I use the word, popular sites for itch? And if so, why? I mean, a lot of people go around scratching their scalp.
The amount that you might itch and the place that you might itch has to do with the network of nerves inside your body and the messages that those nerves are receiving from chemical irritants from outside your body or the chemical messengers within your body.
And my understanding, and I'll just note that I am not a scientist, I am not a doctor, I am a layperson who knows a lot about this, unfortunately, from experience, is that when you have a lot of basically itchy receptors, nerve fibers that accept itch, and you have a lot of
chemicals that engender itch like histamine and others in those sites you'll feel itchy and one thing that happens to me and I know happens to other people with chronic illness who get itching is that it actually you'll feel itchy on the inside of your body like you know in your guts right like part of your body that has you know you're not itchy on your skin and you can't get to it so there's no way to scratch it and I remember talking with a number of dermatologists who are like well you don't really have the nerves for itching on the inside of your body and
And, you know, I would talk to other doctors or patients, people who itched and they'd be like, no, no, no. Like, and I felt this way, too. I was like, no, I swear that I feel it. And I finally found this one neuroscientist who was like, oh, no, no. Some of those fibers exist inside your body. So, yeah, anywhere where you have those, there's probably a little bit of itching possible.
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Chapter 3: Why is scratching a double-edged sword?
So before we get deeper into what scientists are learning about the neural pathways of itch and how itch is different from pain, I would like you to describe the chronic progressive illness that you have that's responsible for the severe itch that you experience.
Absolutely. So I have a poorly understood degenerative disease called primary biliary cholangitis. It's autoimmune in nature. It seems to be partially genetically, you know, you perhaps have a genetic predisposition, but then perhaps environmentally triggered. They don't really know why people get it. Right now, I believe that it's roughly 80,000 people in the United States total who have it.
About 9 in 10 of those people are women. And the disease is most common in adult women, somewhat 40 and older. And it is a disease in which the body mistakenly attacks some of the cells in your bile ducts, in the lining of your bile ducts. It causes them to inflame. It hurts your liver's ability to secrete bile into your digestive system, into your body.
And ultimately, if the disease is allowed to progress, will slowly progress towards cirrhosis. Disease used to be considered or was often considered fatal. They found a drug, an actually really old drug that dissolves gallstones, works really well to slow its progression. And so, yeah, so that's the condition that I had.
I was diagnosed with it during my second pregnancy, though I clearly had it in my first pregnancy. And I was young, although not unheard of, young to get it. And my OBGYNs had never had a patient with it. It took a while to get to a hepatologist who recognized it.
But it, like a lot of liver and kidney conditions, for reasons that are not understood at all, causes really, really bad itching that does not respond to antihistamines and does not respond to steroids.
Annie, before we talk more about you and your condition and your itch, because there's so much more to talk about, I want to talk about what scientists are learning. I was told a long time ago by a dermatologist that itch is kind of a mild form of pain, that it travels the same neural circuitry, but it's just a variation of pain. That apparently is not true.
Scientists have kind of overturned that theory. So what do we know about how it travels down different pathways than pain does? What are scientists learning?
We know a lot more, and we have a pretty clear map of itching that is a allergic response, a histamine response. So the kind of itching that probably comes from trying a new laundry detergent that doesn't agree with you or getting a bug bite, something like that, sometimes called histaminergic itch.
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Chapter 4: What are the neural pathways involved in itching?
So do you try to train your brain to not focus on itch or not experience itch? I say that half facetiously, but I also say that as a form of like, you know, meditation or mindfulness or those kinds of things.
Yeah, there's these interesting studies that show that meditating on pain reduces the sensation of pain for some people, at least. So I know for people who are experiencing childbirth, they'll have you... repeat these mantras, right? Like I'm in pain, but that's my body doing its job. I'm in pain, but that's my body trying to keep me safe and I'm safe. I'm in pain, but it's all right.
And I'm not always going to be in pain. And that can actually really reduce the sensation of pain, sitting in pain and accepting it. And I don't want to say that that's universal. And I don't know what it feels like to be in anybody else's body, but my own. If you meditate on itch, It just makes it worse. It makes it so much worse.
And I've had people be like, well, can you be kind of Zen about it? And I'm like, no, you need to ignore it. You need to say that it's not happening. You need to like attack and override. You need to use all of these other different strategies. Screaming, maybe screaming would help. I don't know that the Zen path works very well with itching.
I remember once I, when I was in my phase of trying to figure out anything that might stop it, I went to acupuncture. Because for some forms of itching, acupuncture has been shown to really help. And I was just curled up on my side with all of these like little tiny needles in my ear and on my spine trying to alleviate this itch. And it was making me so itchy to not move.
And I ended up like breaking a bunch of them. I was like, oh, God, am I going to stab myself? And it ended up being fine. But yeah, itching, I, you know, movement helps. Ice helps. Ignoring it really helps not thinking about it precisely because thinking about being itchy or scratching makes you itchy and makes you want to scratch.
You're right that scientists are thinking that it is sometimes a disease in and of itself. What is meant by that?
When scientists said that itching is a disease in and of itself, what they meant was that chronic itching changes the body's own circuitry in a way that begets more chronic itching, that implies that itching is not just a side effect, it's a body process in and of itself.
And so instead of just being a symptom, instead of being something where if you fix the underlying issue, you might fix the itch, itch itself can kind of rewire the body and can be treated as a condition unto itself. And a lot of dermatologists see itch that way. It's often a symptom, often a side effect, but sometimes it's really its own thing in the body.
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Chapter 5: How are scientists researching the biology of itch?
So I'm very, very, very likely at some point to develop something called Sjogren's, which affects, among other things, the tear ducts in your eyes. And so they've been watching. They're like, OK, are you diagnosable with other things? Do we think that the autoimmune process within your body has kind of slowed down and stopped?
And I had some frustrating conversations with my doctors where they'd kind of be like, OK, let's keep on doing more blood work. Let's do biopsies. Let's do tests. Let's talk about, you know, like improvements that we can see in these hard and fast numbers. And I would say, OK, but can we talk about my symptoms? Like I'm not sleeping very well and the itching isn't as bad now as it has been.
And one of the sort of spooky things about it, and I'm very grateful for this, but I will be not itchy at all for long periods and then it'll just come back out of nowhere. And I don't really understand why. the trigger or what happens. In the spring, this was true for about six weeks. It's been true on and off since I published this piece, I think just because I'm thinking about itching so much.
So finally, one of my doctors was like, yeah, okay, let's focus on the itching. And there's a bunch of different treatment options that they have, and none of them work that well, and none of them work for everybody. So you have all these PBC patients who are kind of doing this grab bag approach to, OK, like, let's try this. Let's try that.
And even the drugs they're suggesting are just like kind of wildly different things. So one of the things that they will trial is analog of a drug that's used to reverse heroin overdoses. It's a medication that blocks opiates in the body. Another is an SSRI, which are commonly used. used to treat depression. There's a antibiotic that seems to work for some people's itching.
I don't understand why that is. And I think that this kind of scattershot ragtag approach reflects the fact that they just don't really understand what's happening in terms of itching with people with my condition. So they're kind of guessing at what might interrupt it. And some things happen to interrupt it and other things don't.
But maybe as they understand it better, they'll come up with better treatment options.
Well, we need to take another short break here, so let me reintroduce you. If you're just joining us, my guest is Annie Lowry, and we're talking about her Atlantic Magazine article, Why People Itch and How to Stop It. We'll be right back. This is Fresh Air. This is Fresh Air. Let's get back to my interview with Annie Lowry about her Atlantic Magazine article, Why People Itch and How to Stop It.
She's a staff writer at the magazine. The article is about what researchers are learning about the causes of chronic itch. Lowry suffers from severe and chronic itch, resulting from a rare liver disease.
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Chapter 6: What new treatments are being developed for chronic itch?
In some sense, I was thrilled to get an answer for something that had been going on for so long. So I never got a diagnosis after my first pregnancy. One of my doctors had suggested that the itching was psychologic in nature and that I was just really stressed out. And I'd never had problems with itching before.
I'd occasionally gotten itchy when I had bug bites or something, but I wasn't a person who was an itchy person. I didn't have, you know, childhood eczema or any of those conditions. So I was thrilled to finally get a diagnosis. And they trialed this drug, Ursadiol, which has really changed PBC treatment in me.
And it was only a year or 18 months later that they kind of said, look, like, you know, your organs don't seem to be responding in the way that we would love for them to respond that we're seeing in your blood work. So we're going to try additional medications.
And that was actually the moment that I got a little bit spooked because they didn't quite say to me, look, there's only one treatment and the treatment doesn't work on you. It was kind of, you know, oh, well, we'll try other things. We'll try other things. We don't know the course of your disease.
And I think that it was meaningful for me personally to find out that I was sick while I was having my kids. And certainly I don't think you need to have children to feel part of the tremendous fabric of humanity at all. But at least for me, it did really remind me of that. Certainly reminded me of my own mortality experience.
And I also think that I was in a place where I was really accepting of the fact that I was getting older and moving into a different phase of life. And all of us, if we have the good luck to live for a long time, are going to have our bodies fail us. And maybe it's actually nice for me to know the way in which my body seems to be sensitive.
And I try not to be dire about it because I continue to be really healthy. The itching is annoying. The chronic fatigue is annoying. The type 1 diabetes is deeply annoying, but it is very manageable. But I'm still enjoying really good health a lot of the time and science is advancing. And I try to remember that.
And in the piece, part of the story was talking about the struggle of just coming to terms with the fact that you might be uncomfortable for a really long time. You are in a body and hopefully you will live long enough for it to fail you. And I talked to two folks who are a lot older than I was just about like, how do you deal with it?
How do you deal with the fact that you might itch and never stop itching? Because I was really revving myself up about it and didn't feel good about it and didn't feel like I had a psychologically satisfying answer. And both of them were kind of like, you put up with it. Stop worrying about it and get on with your life. And they said it in a much nicer way than that.
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Chapter 7: How does anxiety influence the experience of itch?
Right.
Your husband made a T-shirt for you. Describe what was written on the T-shirt.
It says, yes, I have tried lotions. So people, when you say that you're itchy, I think they kindly assume it's a dermatologic thing. And they're like, oh, yeah, I was itchy, too. And I tried this lotion and you should try this lotion. And I try not to get short with those people because they are trying to be helpful.
But I'm like, I'm not saying I've tried everything, but I've tried a lot of things. Like I'm an expert in my own itch at this point. And if Eucerin fixed it, I can assure you that I wouldn't be experiencing it. But people are trying to be nice. And so I try to be nice back. I don't know that I succeed at that all the time.
Do you ever enter into a conversation with somebody and you're itching really badly and you're not going to say anything about it and you think, the person I'm talking to only knew what's going on inside. This conversation might be very different.
Yeah, I try not to talk to people when that happens. I guess in some ways it's nice that usually when I'm really itchy, it's at night, like in the middle of the night. Because, you know, during the daytime, it would be pretty unusual for me to be severely itchy now. That was not true when I was pregnant so much. But now it's like the sun starts to go down.
I'm leaving the office so I can go hide in my house if I'm itchy. You know, so for the past week that I've been itchy, it's mostly it's been at night. And I just excuse myself because it's just like sometimes I'll subtly try to scratch my head or scratch my feet or something. But it's noticeable. People kind of pick up on it. It's like not a cool thing to do socially.
I think it leads to a sense of disquiet in the person that you're talking to. And then they end up scratching themselves. You've just you've allowed your itch to become contagious. Yeah.
My guest is Annie Lowry. We're talking about her Atlantic Magazine article, Why People Itch and How to Stop It. We'll talk more after a break. This is Fresh Air. This is Fresh Air. Let's get back to my interview with Annie Lowry about her Atlantic Magazine article, Why People Itch and How to Stop It. It's about what researchers are learning about the causes of chronic itch.
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Chapter 8: What is primary biliary cholangitis and how does it relate to itching?
Which he's not doing intentionally. And it turns out that that is a hormonal thing. So there are a number of your body hormones, including estrogen, that affect your propensity for itch. And so you have a hormonal cycle during the day. And that's why you itch more at night. So sometimes, yeah, I feel like accidentally nudge me or something. We have two dogs. One of our dogs skulks around.
Patricia likes to get up and sleep on the bed with me, and so she'll do the same thing. She'll wake me up, and I'll wake up, and I'll be itchy, and I'll just be absolutely furious if the itch-crash cycle starts because then it's hard to get back to sleep, and you're taking, like, melatonin or, you know, hydroxyzine or one of these drugs.
And so, yeah, touch can be completely unbearable if you're itchy because it just, instead of setting off those receptors for platelets pleasure or warmth or pressure. It just sets, you know, your receptors for itch off.
You described that when somebody is scratching, people will move away because of the fear that it might be some kind of infestation. It might be lice. It might be scabies or, God forbid, bedbugs. But when you're in pain, people will sometimes do the opposite, that they'll move closer, maybe because they want to help or show their sympathy.
Can you talk about that a little bit and talk about how you've experienced that personally? Sure.
Absolutely. If you saw somebody scratching themselves on the subway, would you go sit next to them? No, of course not. Of course you wouldn't do that. Just instinctively, I think you have that self-preservation mechanism. I've actually noticed it with my kids who are little too, right?
Like if they cry, if they get owies, it's this deeply instinctual thing to go run up and like scoop up the body and make sure that it's okay. And I think that you see that even among adults, right? A crying person, they're sort of a magnet, right? Like, are you okay? Do you need a tissue? Do you need a hug? Do I know you well enough to give you a hug? I would love to give you a hug.
But you don't feel that way when people are scratching. It's a really deep thing. thing. Don't get scabies. Don't get bedbugs. Don't get ticks on you, whatever is going on with them. And I think it's, again, it's like a deeply elemental thing. I don't think that people are trying to be cruel. I think there's something deeply hardwired in there, right?
Like, don't approach the mangy dog that looks like it has fleas all over it. You know, don't approach the human that's compulsively scratching themselves, which, you know, is socially coded in the same way that like chewing with your mouth open is. It's not something that is an attractive thing to do.
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