Urticaria Specialist Dr. Marcus Maurer Explains Chronic Hives
In this video, I interview Chronic urticaria specialist, Dr. Marcus Maurer, about chronic hives.
Dr Maurer talks about the mechanism of chronic urticaria and offers a message of hope for patients who are suffering.
Chronic Urticaria Specialist Offers message of Hope to Patients
Dr. Marcus Maurer Explains his Background as a Chronic Urticaria Specialist
Sarah: Okay, thank you so much. I really appreciate you taking the time to take time out of your day to talk with us about urticaria As I said, I run a Facebook group and we’ve got over 2000 members of women with urticaria. So they’ve of course got tons of questions. I know we won’t be able to get to everything today, but for those of you who are, for those who aren’t familiar with you, could you just tell us a little bit about yourself and your involvement in urticaria?
Dr. Maurer: Sure my name is Marcus, Marcus Maurer. I’m a Dermatologist and Allergist. I work here in Berlin at the University Hospital. My team is Dermatological Allergology. We like mast cells driven diseases. Believe it or not. We love urticaria for, well for its scientific interest. It’s scientifically a very interesting disease to study, but we also love working with urticaria patients. It’s just great to see that many patients, mostly by the words we say, but also by the medication we use get better and can be helped and are so frustrated by this disease and so troubled by it. So we have a big team, 160 people work here to study urticaria, do clinical trials, see patients. And yeah, we, we try to help patients with urticaria here in Berlin, but we also work with the global You Care Network. Urticaria Centers of Reference and Excellence, and well, everyone who wants to increase knowledge and awareness and improve the management of urticaria.
Sarah: Wow. So it sounds like you got a lot going on. So how did you become passionate about urticaria? Is it just the science behind it?
Dr. Maurer: Initially it was the science. I studied mast cells and you know, we all know that mast cells are the bad guys urticaria. For many years, for their good sight. No, my question was when I was working as a young doctor, why do we have mast cells? And we learned so much about mast cells that, well, eventually we said, now we need to put all this knowledge to use and help patients with mast cell driven disease, urticaria, mastocytosis, mast cells activation syndrome. And over the years, 10, 15 years now, more and more people came and joined us. And this is how the group grew. As I said, scientifically, it’s very, very interesting to try to figure out what’s going on in almost everyone believes it’s an allergy. Or it looks like an allergy. You go to allergists, you get an anti allergic medication, but it’s not an allergy. And that is what’s so fascinating. How can the body make a disease that looks like one thing, but is deep down something else. And to figure that out and to base the development of new treatment options on this inside, it’s just very rewarding.
What Causes Chronic Urticaria?
Sarah: So have we figured that out yet, or is that still in question, the cause?
Dr. Maurer: There’s still lots to do, but we have made tremendous progress. Look, there’s 10 forms of chronic urticaria. Most of them are chronic inducible urticaria, cold urticaria, cholinergic urticaria. And the big one is chronic spontaneous urticaria. We we’ve learned a lot about CSU chronic spontaneous, but we still need to learn a lot more about the singles, the chronic inducible forms. And what we know about CSU is that it’s not an allergy. We know that. In some patients, it’s a true auto-immune condition where we know the auto antibodies that the immune system makes that go to the mast cells in the skin, activate these mast cells to release histamine. And that is what causes the wheals and the angioedema and the itch. Now, other patients, And actually there are a lot more patients than the auto immune chronic spontaneous urticaria patients. They get CSU because of auto allergy. So what that means is they are literally allergic to themselves. So it is kind of an allergy in the sense that we make IgE antibodies, just like when we have hay fever and are allergic, but these IgE antibodies are not directed to pollen or house dust mite, or peanut or other allergens. They are directed to our own proteins, our own body. And so we carry this whole machine that is the mast cells activating machine with us, the auto antibodies, IgE and the auto allergens. And when they come together, then must cells must degranulate. And that’s what we see in most patients with chronic spontaneous urticaria.
Sarah: Oh, so that’s interesting. So it’s, so there’s autoimmune and immune aspects. It’s not necessarily one, or the other or both together, either/or.
Dr. Maurer: Either/or, and no, it’s…You know, this was the simple version, most patients have this auto allergic type. Some patients have the auto immune type, but there are also some patients who have both and very few patients who have none of those. When we look in the blood, when we look in the skin, but most patients we find these signals that explain why patients get this. Now that is not to say that stress and food and infections and drugs like ibuprofen or aspirin have nothing to do with chronic urticaria. No, no, no, no.
We make the difference between signals that degranulate mast cells, because that’s what happens when we get wheals angioedema and signals that act on mast cells to change them, to make them well twitchy. We say sometimes, to make them more ready to respond to a degranulating signal. And this is what stress does. No stress comes with signals in the skin that we can measure. Substance P is one of those signals. They act on mast cells, not necessarily to degranulate, but to make the mast cells more ready to respond. And this translates to, it’s easier for patients to develop wheals when they’re stressed. It’s easier for patients. Well easier. I shouldn’t say easier. It happens more likely when certain drugs are used, like ibuprofen, like aspirin, foods, all these things, they modulate the disease. They’re not the cause, but they have impact and effects in this disease.
Looking for Triggers to Manage Symptoms of Chronic Urticaria
Sarah: Okay. So that makes a lot of sense because all those things that you mentioned, stress, Motrin or other NSAIDs and diet, those are a lot of things that people in my group will try to cut out, you know, or try to kind of regulate to manage their symptoms. So what are your thoughts on that?
Dr. Maurer: Sarah, I’m all for that. I’m all for watching our bodies to see what we tolerate and what is not good for us and the disease. What we don’t want is for patients on top of this stupid, stupid disease that has so much impact on all parts of life to make it worse by very restrictive diets or restricting yourself in other ways. No, I know many patients who stopped doing sports, who stopped to travel, who stopped to have fun because they’re afraid that this will trigger wheals and angioedema where it is easy to stop something that makes the disease worse, please, by all means, do that. No, watch your body. Try to figure out what you tolerate, what you don’t. But on the other hand, quality of life is important and not good in patients with chronic spontaneous urticaria. We know that let’s not make things worse by limiting ourselves, restricting ourselves in the way we eat, the way we live. We have good treatment for chronic spontaneous urticaria. treatment that will make most patients tolerate all of this. No, you still shouldn’t take aspirin and ibuprofen. No, that’s like a basic rule for all chronic spontaneous urticaria patients, but you should be able to be stressed every once in a while. That’s part of life. No good stress, bad stress. And we want our patients to have normal lives, have complete control of their disease.
Sarah: So is there any particular diet that would be helpful or should they be tracking symptoms, if they do decide to go that route, you know, without obviously eliminating too many things and getting too, too stressed about it?
Dr. Maurer: The latter. So we are very much in favor of patients monitoring their disease and we like the urticaria activity score. No, that’s a very simple tool where every day you take boxes for the number of wheals you have and the intensity of the age freely available, super easy. And all of our patients use this tool, use the urticaria activity score. Not just to measure how bad things are, but also to write down what was special on days where they had high disease activity. And once you do this for a month or two, well, sometimes a pattern evolves where it’s always worse on the weekend. And then you can ask, well, what’s going on on the weekend. That’s not going on during the week, or it gets worse every time you have a viral infection, for example. So you, you have a tool that can help you to learn more about your disease. What’s bad for it. And then if possible, avoid it. We really want our patients to take control of their disease because in my experience, most patients will have this disease are controlled by the disease rather than the other way around. We need to change that. You know, Urticaria is bad for your sleep, is bad for your… I don’t need to tell you what it’s bad for. You all know what it’s bad for. And we want to change that. And to be able to really change that we need our patients to give us the information to do that. Look, I see many patients with chronic spontaneous urticaria, but most patients, when they come to me, do not have wheals. Do not have angioedema. They… No… And I know how bad it is and how bad it will be when they go home and how bad it was before they came to see me. But to really get the full picture of what is it like every day during the week, we need tools like the urticaria activity score like the urticaria control test, wonderful test, and also tools that tell us something about the quality of life impairment that our patients experience. So I’m a big fan of these tools. They’re freely available in many, many languages, including English, of course. So I want to encourage all of you to use them and help your physicians and yourself to get a better grip of the disease, a knowledge of the disease and help to optimize the treatment so that you can reach complete response, complete control.
How to Advocate for Yourself as a Chronic Urticaria Patient
Sarah: That’s great because, actually one of the big questions is, you know, a lot of times we go to our physicians with complaints of the symptoms, and they don’t see them and they tell us, well, you know, you’re just stressed and they kind of brush it off. They’re very dismissive. So that was going to be one of my questions is how can we kind of advocate for ourselves, and get them to take us more seriously?
Dr. Maurer: Take pictures. I’m serious. Use your phone, document your wheals and show them to your physician when you’re in the visit. No, we, we, we know what urticaria look like, but we don’t know what it looks like in you. And we don’t know how bad it is. Of course it’s always just a, you know, a moment shot, not you, you know, but still, this is what, in my experience, especially with young doctors or doctors who don’t have that much experience with chronic urticaria. It changes their view of the disease and of your problem. Look we’re… many of us are dermatologist. I’m one, if I have a patient with psoriasis, walk into my office, all I need to do is look at the skin and I know how bad it, well no, but I have, I see something. No. The same with atopic dermatitis, with acne, most skin diseases come with a clinical picture that I can see. That’s so vicious about urticaria that is really bad, but usually not when you’re in the doctor’s office. it’s mean, but that’s the way it is. So help us to better understand what it is like for you by showing us pictures, bring them to the office together with the results of the urticaria control test, or the urticaria activity score, make your physicians understand where you’re at. What this is doing to you so that they can understand that they need to treat and need to treat well.
Resources for Chronic Urticaria Patients
Sarah: Okay, and where can we find those resources, are they in the UCare website?
Dr. Maurer: They should be. The UCare website…
You know, you found me via the Tiktok channel that my daughter made, Let Me Ask My Dad. We just yesterday put some resources in the profile, including the UCare website, the Urticaria Network website. But if you Google just urticaria activity score, you’ll find many versions, just urticaria control test, many versions. And if not, send me an email, I’ll be happy to send it to you and to distribute within your network within your group. Really every patient with chronic spontaneous urticaria should use one or more of these tools.
Systemic Symptoms in Chronic Urticaria
Sarah: Okay. Great. Well, thank you so much. It’s good to know that we have a resource out there to help us get proper care. What about systemic symptoms? A lot of people in the group experience, joint pain, GI symptoms, along with their hives. Is that something separate or is there correlation there?
Dr. Maurer: That is not really well understood. We know that some patients have problems, signs, symptoms beyond what happens in the skin. It is probably what happens to the skin that affects the other organs. Think of it like all of your mast cells going crazy in the skin, or many of them releasing a lot of histamine. So there will be some spillover of histamine into the blood and from the blood into other organs. Some organs are very histamine sensitive, the joints, the gut, the brain. So this is how we explain that. Especially in patients with severe disease, lots of, lots of wheals, frequent angioedema. these other outside of the skin symptoms can occur. The good thing is once you find treatment that gets rid of the wheals. Stops the wheals. Prevents wheals and angioedema from happening. Those other signs and symptoms go away as well. So that’s really, again, the overall goal to provide patients with a normal life, no more signs and symptoms, including those that happen outside of the skin and yeah, complete control.
Do you need an Epipen for Angioedema
Sarah: Okay. Great. For those who get angioedema, is it important for them to carry an epipen? Are they at risk for anaphylaxis?
Dr. Maurer: No. No. Two no’s, two big no’s. No. There are forms of angioedema that can go all the way to the throat and even make it difficult for you to breathe. But that’s not the angioedema that happens in patients with chronic spontaneous urticaria. Yes, it’s frightening. Yes. It’s annoying. But it’s the lips, the tongue. It doesn’t go where it becomes dangerous. So there’s no use and need in patients with chronic spontaneous urticaria who have angioedema to carry an epipen. This is very different in patients with true allergy. And of course there are also other forms, rare forms, hereditary angioedema that have nothing to do with mast cells where other rescue medication is needed, and should be carried, but not in chronic spontaneous urticaria.
Sarah: Okay. Okay. Well, that’s good to know ’cause a lot of people I know get very anxious about that. It’s definitely scary a feeling when you feel like you can’t breathe and you’re starting to, you know, suffocate. So, but they’re not in danger. It’s more…
Dr. Maurer: They’re not in danger.
More information for patient education
Sarah: Okay. Very good. So I know there’s a lot of questions we’re not going to get to today. Is there a place where patients can find information to educate themselves as patients?
Dr. Maurer: I think you’re doing a great job. It’s very important for patients to inform each other, to learn that they’re not alone. So I… we support all groups of patients who take care of themselves and help help each other. And for a long time, there haven’t been many groups. And now we’re seeing in many countries groups coming together, non-for-profits being founded, even foundations that come into place. So these are all great, a great resource, not only for the information that they provide, but also for the support, the moral support. This is a really bad disease and you need friends, and supporters to be able to live with this disease. From a physician point of view, we have great resources and we’re working to make them even better. The UCare Network has just launched UCare For You. It’s a platform for patients where we will have webinars, where we will have a website that has information. So this is all coming soon. 1st of October is urticaria day. Another website that provides excellent information on urticaria. Look, I sometimes go to YouTube, and other platforms and there’s a lot of nonsense on there. So don’t take everything that’s on the internet as something that will help you. But when it comes from UCare, the Urticaria Network, urticarialogists, then those are good information and can help. So have an eye out for that. You know, the You Care Network has now 125 centers. They are in a network. So they have to fulfill criteria. They are certified centers of reference and excellence for urticaria. Those are always a good source in your country or through the network resources that we have to get good information and answers to your questions.
Sarah: Okay. That’s great. I’m really looking forward to the UCare For You. That sounds perfect.
Dr. Maurer: Yeah.
Chronic Urticaria lasting more than 10 years
Sarah: Okay. So a lot of times we’re told that it’ll will just kind of resolve itself in a year or two, but a lot of us have had it for 10 years and we’ve more got people in the group who’ve had it even 50 years, is that different? Is that, should we get further testing, or what are your thoughts on that?
Dr. Maurer: The overall experience is that chronic spontaneous urticaria, and that’s also true for the chronic inducible urticarias, goes away. Spontaneous remission. And we don’t have really precise numbers, but my educated guess is 99% of patients lose their urticaria eventually. We have a bit of information on how long that takes. And the average is five to seven years. That doesn’t mean much for individual patients because most patients like you say, have it for one, two, maybe three years, and then it goes away again. There are patients who have it for 10, 20. I also have patients who’ve had it for 50 years. So the average always brings on board these outliers. The very long duration urticaria patients, and the many patients with a short duration. So all we can say, and we do say that to all of our patients, look, this will go away. And until it goes away by itself, we will work to help you forget that you have it, unless you forget to take the medication that we’re going to talk about. So the goal is really to, while we cannot cure urticaria yet in the sense that we do something and then it’s gone, it never comes back. We can do many things to prevent the wheals, prevent the itch and prevent the angioedema. And that is very important to know that even if you’ve had it for a long time, there’s usually no use in this endless and vicious cycle of testing and testing and testing. I see that in many patients who come to me and they say, look, I’ve been to so many doctors, no one knows what this is. You must know. You must be able to do that one test that will give me not only tell me why I have this, but then we’ll also help to get rid of it, and cure it. And this is not so. No, it’s not an allergy. We established that. So a lot of the tests that are being done are allergy tests. They will not find why you have chronic spontaneous urticaria and at the specialist centers. Yes, we can look for auto allergy, auto immunity, but in the end it’s still a one size fits all treatment approach. So I’m very concerned that this testing would raise hopes in us being able to cure the disease, which is not true. We cannot cure. We can treat very well, but we cannot cure. And more importantly, we’ll delay effective treatment. You know, as long as patients and physicians think that further testing will have impact on the treatment, there is a chance that you will not get the treatment you need until all of this testing is finished, and that’s not good. We should treat and treat to target in the sense that don’t stop until you found treatment, that really gives you complete control. We don’t want our patients to have less wheals or less frequent angioedema or reduced itch. We want no wheals, no angioedema, no itch. And this is what we need to do. Find treatment. Step up therapy. To provide this to all of our patients, and those patients who really do not respond to first line second line, third line, and then fourth line treatment. Well, that’s when we take a step back and we say, well, maybe there’s something going on, but that’s, you know, I’m going to say one in 20 patients or even one in a hundred patients where this is really useful for most patients it’s not, and the priority should be, get good treatment. We can treat this.
New treatments for Chronic Urticaria
Sarah: Okay. You know, we’ve been hearing about this new medication coming out. Do you have any insight on that?
Dr. Maurer: Yes, actually, there’s not just one. There will be more. So right now we treat with a non, we call them non-sedating antihistamines because they don’t make you tired. And that is even so when higher than standard doses are needed. So, you know, we know that your standard dose antihistamine will only help one in three patients with chronic spontaneous urticaria. That’s very well known. So don’t be frustrated if it doesn’t work in you. What we do next is we use higher than standard doses up to four tablets of these antihistamines that even at the higher dose, don’t make you tired. And that, well, maybe 50% then no of patients reach the treatment goal. If that doesn’t work, then we work with omalizumab, which is an injectable. So you give it to yourself every four weeks, and when that doesn’t work, we have other treatment options. Now what’s exciting is that for the first time in the history of urticaria and mankind, we really have very interesting, very targeted new treatments that come our way. One of them is better omalizumab. It’s called ligelizumab. It’s already in advanced clinical testing with very nice results should be available maybe next year or the year after, but also different treatments that aim to silence, mast cells, very exciting. So far, we’ve been able to stop the activation. Nope, but we haven’t really been able to tell mast cells, shut up, sit down. And this is exactly what this new treatment approach does. We even have here in Berlin. And also in some centers in the US a clinical study with a mast cells depleter. So we can now do something that makes mast cells go away, and with the mast cells going away, the disease goes away. So this is all very exciting for us as urticaralogists, but I think even more so for patients. And I guess what I’m trying to say is the future of urticaria treatment really looks bright. But I think we also, patients and physicians have to understand that it is in our hands to make these studies work, to bring these new treatments to all patients. So if there is a clinical urticaria study close to you, consider to be part of this and help yourself with participation in this trial and others, so that these drugs, well, these new ways of treatment become drugs, and become drugs soon.
How to participate in Clinical Trials
Sarah: So how would you go about doing that as a patient, would you just talk to your doctor, and they ask about clinical trials?
Dr. Maurer: Yes. In German…Okay. In Germany, my country, we have a platform, a website that is run by the Urticaria Network. You can go there and whenever a new study starts, no matter where in Germany, it is put on that website. We’re talking to our US colleagues to do something similar because well, it’s sometimes hard to find, find where a clinical study is. The UCare Network is also in the process of doing this, but we are 42 countries. So it’s a bit, a bit more complex to put the information for each country on a website.
But certainly, the UCare’s in your country will know if there are clinical trials. So call them, email them. And many physicians do know this through mailings and other forms of information, especially allergists and dermatologists.
Message of hope for those with Chronic Urticaria who are depressed and suicidal
Sarah: Okay, great. Okay. And then I know we’re running short on time here. I just wanted to mention that a lot of patients have depression. Some are even suicidal at times. What message would you like to give them?
Dr. Maurer: Don’t give up. I know how hard this is. And I know how this can get you down. There’s no question that this is a really, really bad disease for many, many patients. And we also know, and this wasn’t so clear in the past too, for many physicians and patients that the depression that often happens, the anxiety, the panic disorders in patients with chronic spontaneous urticaria come from the urticaria, not the other way around. You don’t get urticaria because you’re depressed. You get depressed because you have urticaria. So don’t feel that we don’t understand you. We understand very well how this disease can get you down. And we also know that when you get depressed, when you get anxious, when you get stressed, because of the disease, this is not good for the disease. So there’s a cross-talk between the nervous system and the immune system. And by stopping the urticaria, we can also help with depression, anxiety, panic disorders, and other mental health issues. Seek help. Don’t give up. Even if you’re talking to the third physician who seems to not know what this is, and how bad this is, and how they need to treat or help you treat. Don’t give up. There is effective treatment, a treatment that will make your life normal again. That’s the message. So don’t give up, don’t fall short of that. Although I know how frustrating this can be sometimes depending on where you live and who you talk to, but the main point is to help yourself, help each other, stay strong, and don’t give up in seeking the treatment, seeking the help that you need and deserve.
Sarah: Thank you. Yeah, that’s the big one is, you know, physicians, family members, you know, being dismissive. So you taking the time out of your day to talk with us. I mean, I really appreciate it. I know it’s gonna be so helpful, and just to know someone out there, and it sounds like a lot of people care and are working on solutions for us. So it really means a lot.
Dr. Maurer: Great. Well, I wish you all the success you should have and deserve, and you can for sure know that there are people out there who care about you. Are really invested in helping to better understand this disease so that in the long run we can cure it. We’re not happy with where we are. Yeah, we are happy because it’s better than it was 10 years ago, but we want to cure this disease. And this can only happen when we positions and you patients work together in projects and clinical trials. And in you giving us the information we need about your disease. So go check out all these different ways of staying informed the websites, Let Me Ask My Dad, the Instas, the urticaria day. We tried to bring good information to you, and we would really appreciate your feedback, and maybe even collaboration, and cooperation in doing so. So thank you very much, Sarah, for reaching out to me.
Conclusion and Resources
That was a lot to take in but I hope it was helpful.
I feel that the fact that a chronic urticaria specialist like Dr. Maurer took the time out of his busy schedule to talk with us shows how much he truly cares. It is also validating to hear that it is a mast cell disorder not just an allergy or skin rash, and systemic symptoms aren’t just in our heads.
Here are some of the resources he mentioned:
UCare Urticaria Specialist Centers
Other Resources
Watch our follow up conversation here https://youtu.be/ZFPcii7IdfA
Join the Facebook group Women with Chronic Urticaria Thrive With Hives.
Natural NSAID alternatives for pain relief
