All Things Urticaria: Webinar 2021
Revisit highlights of this 2021 All Things Urticaria webinar, in which Marcus Maurer and Petra Staubach-Renz addressed topics ranging from comorbidities, autoimmune diseases, and diagnostic delays in CSU to treatment strategies, the role of biomarkers, and future directions in disease management.
- Well, the first topic we picked, and it was really difficult because there are so many interesting topics, is on comorbidities. And I think during the last months we've really learned from many papers, but also from the news that was shared on all things urticaria, that comorbidities are a huge topic. You know, when you look at the current guidelines that just came out, one of the seven Cs of the diagnosis in chronic spontaneous urticaria is comorbidities. We are to look in all of our patients for comorbidities, and I know your heart, Petra, is with one certain group of comorbidities, the mental disorders, the psychological ones, but those are not the only ones. And we do want to encourage you to think about three groups of comorbidities that need to be considered in all patients with chronic spontaneous urticaria anyway. And the first one and Petra is really on the forefront here is chronic inducible urticaria, where we do want all patients to be explored for that. Petra, what is your take? Do you test for all CIndUs in all patients with chronic spontaneous urticaria or do you do this history-based question driven?
- Yeah, that's changed a little bit. So far, we are asking, of course, we have the anamnesis with the patients and in, in my opinion, the patient, they tell us the symptoms, the severe symptoms first. So if they have cold urticaria, they talk about cold urticaria and how they feel and so on. And I always, I learned to ask for the other group as well. So do you have also have sometimes only some of them spontaneous hives or something, and then very, very often and I think what we learn is that we have in about every fourth patient the combination, the combined form of inducible and spontaneous, and I think it's much more.
- Yeah, I agree.
- And therefore we, to answer, to give a short answer, we do not do every test for inducible urticaria, but we ask for this and then, of course, we do the tests.
- Yeah. No, very good. Your guidance is very much appreciated. I do see the first questions rolling in, so please continue to pop them in the chat. I will have a look and we'll go and address them in the second half of our programme today. Look, we had fantastic episodes on chronic inducible urticaria. I remember sweat it out, I think it was Episode 4, we had two on cold urticaria, including cold CE, one on symptomatic demographic also super interesting. And of course, we had let's talk comorbidities where chronic inducible urticaria, I think it was Episode 21, was also touched on. Thank you at this point to all of you who contributed to one or more of the episodes of all things urticaria. We have a follow-up question on solar urticaria, "Can it come together with cold-induced urticaria?" I love that question because there's two answers. Now, first of all, one in five patients with a form of chronic urticaria actually has two or three, at least more than one. So absolutely there are patients out there with pairs and triplets of chronic urticaria.
- Yeah.
- Chronic spontaneous plus a CIndU. And also there are patients with more than one CIndU, symptomatic dermographism and pressure urticaria, or I don't even want to go into these pairs because every possible combination exists, it's simply a question of what is more common? So for sure there are solar urticaria patients who also have cold urticaria. Now the second answer to that question, and here it gets really interesting, is that sometimes they're not just there together, sometimes they are codependent. In other words, patients need two triggers to be present at the same time in order to develop the signs and symptom. That would mean for solar, cold that it would only be a trigger of wheals when the sun shines on cool skin. It doesn't happen very often, but it does happen and these cases are reported. Please do, as Petra says, bring these cases, these rare and interesting cases to the CURE Registry so that the community can learn from them and that we can use them also to learn more about why it is that these triggers need to sometimes be combined in order to make the wheals come.
“Patients tell us the severe symptoms first.” Petra Staubach-Renz offers advice on diagnosing chronic inducible urticaria, and Marcus Maurer discusses multiple concomitant urticarias. View transcript.
- We do want to touch a little bit on the other two groups of comorbidities. Now, autoimmune comorbidities, of course, are very common. What is your take on this? We say in the guideline, this should be question and answer driven, but we also say that we should now look for IgG on anti-TPO, a marker for Hashimoto, if you want, but also a biomarker for severe utricaria in all of our patients. I know that you see many children. How important are comorbidities and especially autoimmune comorbidities in children with chronic spontaneous utricaria?
- Yeah, if you say children, you have to think about the parents and they always want to know why does or do my, or does my child have such problems or symptoms and they want to have a reason or they want to understand what's going on. And we are a centre for urticaria, so we are looking for autoimmune diseases like thyroid autoimmune diseases, and we are looking in the blood for this because the symptoms, very often, they do not have symptoms. And we also look for IgE, for example. And of course we look at the whole skin. Sometimes you can see vitiligo. I think in other countries more than in Germany, but we look for this and we sometimes wonder how often we can see it, even in children.
- Yeah, yeah, I have the same experience. I think for many years we underestimated the importance of looking for this, and I don't really know, but it's a lot. How many patients are diagnosed with that comorbid autoimmunity, be it rheumatoid arthritis or Hashimoto by their urticariologist, and you know, this is also important that we look at the whole patient, not just the wheal and not just the angioedema. First question here that we can sort of weave in. Do we have any tests to screen for comorbidities, for autoimmune comorbidities?
- I think the blood is the only thing.
- The blood is good, but I really want to stress that history taking in chronic spontaneous urticaria is essential. So, you know, Hashimoto is so prevalent that I always ask about sleep and digestion and hair, and you know, some of the things that-
- Yeah.
- Come with Hashimoto no, but...
- Yeah, but my recommendation for everyone who is handling the patients, we ask always to fill in a questionnaire before they come to my room. They have to send it, in our hospital, they have to send it to us. And then I check it in the beginning, and I know the questions. It's a time from three to five minutes, but the is much deeper, and they write everything they have or they had in the past. And it's really, it's better quality. That's my opinion and it takes not more time. It takes less time.
- Look, we're getting so much feedback here. Thank you guys for being so active. I'll try to work this all in. Ellie says in Brazil, it's been a routine to check for Hashimoto and I strongly want to echo that. We also do that, we explore that by good history taking, but also by looking at auto antibodies and thyroid hormone levels. That is a good idea, simply because it is so common and then...
What’s the link between CSU and autoimmune conditions like Hashimoto’s disease? Petra Staubach-Renz covers key diagnostic tools, pediatric insights, and why a detailed medical history matters. View transcript .
- Dermot has joined us. Thank you so much Dermot. That's fantastic. Offering family practitioners a look at this, and he's saying, should comorbidities be segregated by those which are associated with causation and that are consequent to CSU? Fantastic Dermot. This is exactly what we do because comorbidity is a very broad term. Basically it just means that it co-exists. It doesn't talk about causality or consequence. And we do see that some of the comorbidities, and this brings us to the third group now. Our consequences and that is depression, anxiety, panic disorder. These are comorbidities in the sense that there are consequences of the disease, never the other way around. So yes, comorbidities can be consequences. I know of no comorbidity that is the cause. If a patient with CSU has Hashimoto, well that's because autoimmune diseases like to come in pairs or triplets. No, it's not that the Hashimoto cause the chronic spontaneous urticaria, they're both there. They may influence each other. They're both based on the same ability of the host to produce autoimmunity. And when we come to chronic inducible urticaria, okay, there are two urticarias in the same patient, but neither one of them is causing the other one. So if then we are talking about consequence rather than 'cause. Thank you very much Dermot for pushing that. Now I-
- But Marcus, may I mention one thing?
- Sure, go ahead.
- Because I think it's important at this point, therefore we need registries, which is this, where we can look for comorbidity. And in the follow-up, we can see maybe how we can get rid of those comorbidities. I think it's possible like depression or something like this if we help our patients to manage the urticaria.
- Absolutely.
- And this is really, really important to join this CURE programme.
- Yes, please do that. We know from a fantastic work done in Korea, South Korea, that every year of having chronic spontaneous urticaria, uncontrolled chronic spontaneous urticaria, adds to the risk of developing anxiety, depression, or other psychological disorders. So let's not just look at the urticaria, but also the consequences that good treatment can contain.
Marcus Maurer addresses which conditions are a consequence of CSU, rather than simply coexisting, and Petra Staubach-Renz makes the case for the role of registries in this regard. View transcript.
- Petra, we gotta move on. We have so many interesting topics here that we wanted to cover, but we got stuck on comorbidities, a very important topic. But I remember beating the burden of chronic urticaria, or when doctor becomes patient. I'm not sure which episode it was. You have to look it up. These are really episodes that deal with our treatment goals and also with why we fail sometimes. You know, why is it that still so many patients are out there undertreated, with uncontrolled urticaria? What can we do to reduce the diagnostic delay and especially reduce the getting held up with treatment. Why do we not get patients on effective treatment faster than we do? What do you think is the main reason for patients not getting what they really need?
- Yeah, I think we are typical German. Maybe the others can answer your question. Because shouldn't we be happy that we have such a good management? No, we are not happy, of course, but we have done a good job the last years. Of course, it could be better, but maybe we have to do small steps. And I think this new forms of communities, going to the patient groups, we have some new groups from patients who are talking to patients and so on. And I think we are doing different things in different ways and that's the solution, to go to the patients. It's not worse to go to those who do not want to treat the patients and so on, but go to those they want to treat,
- Yeah.
- or to join the community.
- In compliance to guidelines, is Jong Hun Li, answer to the question that you just answered. Why does it take so long? Or why do we never bring patients to effective treatment? I do agree with you. Yes, if more people were to read and follow the guideline, yes, then we would have better treatment out there for patients with chronic urticaria. So let's spread the word, the guideline is out. Do translate them. Do use them in your country. Make them known to non-urticaria experts. Make them known to patients and empower patients so that they can benefit from these new guidelines.
- And in my experience, it always takes some years to go through the whole world. And if they know how easy it is to be successful or to treat successfully the patient, then they will follow. No question. No doubt.
- Absolutely. Absolutely.
Why are CSU diagnoses still missed or delayed? Marcus Maurer and Petra Staubach-Renz discuss the gaps in practice and why guideline awareness is key. View transcript .
- Question here, "Are there any biomarkers that can show us the possible duration of CSU?" Look, I'll give you my-
- I love this question.
- I'll give you my spiel on it because I do think that there are biomarkers on a population basis. I tell all of my patients, "This is a really bad disease. I know this is really bad, but I also know this disease and you are in the right place." I also tell them there are very few good things about uticaria, but one good thing about uticaria is that it goes away by itself. Then the next question, as you may guess, is always, predictably, "Well, when, doctor?" And then I tell them, "Well the average duration is five to seven years." And then I hear, "Well, I've already had it eight years." So this whole concept of average doesn't really apply to the individual patient and neither does any of the biomarkers or clinical markers that have been associated with long duration or high severity of the disease now, including angioedema, high disease activity. Some of these markers are just good to associate them with the overall course, the average course, but not with the individual cause.
- But do you know when I discuss this, the same thing with the patients, I very often discuss that we do not know if we treat hard and early, that it's the duration is shorter. And I would like to know, can you remember we would, we are talking about this 25 years and I think this is important and here again, cure, we can find this solution and if we could show this, then everyone can get an excellent treatment very early and maybe then they have the shorter duration. This is really interesting.
- Yes, and that reminds me of a wonderful episode that we did on acute urticaria and we discussed exactly that point. How valuable is that limited data that hitting hard and hitting early in acute urticaria can actually prevent the chronification. And I said, look, we need more studies and we all know how hard it is to do acute urticaria studies, but we need more studies to understand why is it that only very few acute urticaria patients go on to become chronic uticaria patients, whereas most stay with acute uticaria and lose it after a couple of days and weeks. And what is the impact of how we treat acute uticaria on the course of the disease? And really, we may consider ourselves to be uticariologists, but we're only as good as the data and the knowledge that we have and our knowledge and data on acute uticaria is very, very limited. So this to me is one of the biggest unmet needs.
- Yes.
Marcus Maurer explains why knowing the average duration of CSU is rarely helpful in the clinic and why it’s tricky to predict it more precisely. View transcript .
- Oh, good question here from Hassan.
- A patient with CSU and severe asthma, IgE 900, eosinophil count is 700. Go on, Hassan. What's your question?
- Maybe he wants to ask the right medication therapy.
- Ah, do you think omalizumab will work? I think that's the second half to his question. Yes, I do. Yes, I do think that it will work. Look, omalizumab is an asthma drug, omalizumab is a urticaria drug and have seen it work on both diseases in patients who have both.
- But I think yes, omalizumab will work. And we are working together with our pulmonologists. We have a lot of patients together with them, and we know that it works. So we, back again, Marcus.
- Back again. Yes, and I agree with you. It will work. And I'm, you know, I'm always happy when I see IgE in the hundreds, because this is one of the markers that points me to autoallergic urticaria and autoallergic urticaria patients, they tend to respond fast and complete. Now, you may argue that this patient's IgE is high because of the asthma rather than the urticaria. But hey, who cares? This is the standard of care for patients who fail antihistamines. So let's do it and let's see if this patient will respond My prediction is you will have good impact for both.
- But Marcus, one question, what the patients are, or if they are on treatment with antihistamine, they do not work. And then add on omalizumab. Do we have a biomarker which says omalizumab works during the first weeks? Or you have to tell the patients it may work, you are at home, you have no more symptoms, but it may last several months. When do I have to stop and so on. And I would like to know, does it work fast and when does it take time?
- Yeah. Look, I wish I had that. All I can say is indirectly yes. You know, you'll see me smile as a patient when I see that your IgE is high, that you have a comorbid allergy. No autoimmunity, no angioedema, because those are markers of autoimmune, chronic spontaneous . Then I'm fairly confident that within the first month of your first injection, you will be fine. Now, if you are a patient, Petra, who tells me, "Oh, I also have Hashimoto. I have lots of angioedema. It's been going on for a long while and you know, and plus I have low IgE and I have elevated IgG and anti-TPO." And then I go, "Oh, oh, oh, oh, oh." I will still try. No, but I will be a lot less enthusiastic about being your hero during the first month of treatment. I will tell you that this is the best thing that we can do. This will take time. We need patience. Do tell me if it's too hard to endure. And then we have to think of other solutions. So it, you know, it's not a hard predictor. It's more of a expectation management tool. And I do recommend that all of you look at IgE and anti-TPO. And if the IgE is low and the IgG is high, please do suspect autoimmune, chronic, spontaneous urticaria and keep an extra eye on this patient when you start your omalizumab treatment, it can take six months before you really see them respond. Wow. Lots of questions. I shouldn't be talking so long.
- But it is important to tell the patient it works, but stay, and of course we have to talk to them and then it's okay.
Can omalizumab work for patients with CSU and asthma? Petra Staubach-Renz and Marcus Maurer discuss how biomarkers guide decisions and what the 2021 guidelines say about dosing. View transcript .
- What are my thoughts on the new treatments for urticaria that are in clinical trials? Oh my goodness. Do you have an hour or two that you want to stay? I love the clinical trials that we're doing and I love-
- Maybe next session, Marcus.
- Maybe next session.
- Topic for the next session we can talk about in one sentence.
- Yeah, absolutely. And thank you all for contributing as study centres to these clinical trials. I think this is for many patients with urticaria, something entirely novel that there are clinical trials that they can participate in. And finally, I mean, finally we have the clinical trials with so many interesting new treatment approaches. Deleting mast cells, silencing mast cells, better anti-IgE anti-TSLP, anticomplement, anti-H4 receptor antagonists, mamma mia! I mean, who would've thought 10 years ago that we would ever have more than one study to offer to patients to participate in. It is fantastic and I think this will make many of our patients over the next years-
- Yeah.
- So much better.
- And like an Omalizumab, in other diseases as well. And here we have an interdisciplinary approach as well in some treatments and-
- Oh, yeah.
- They are launched very, very soon. So it's really interesting at the moment.
- Yes.
- And I'm happy that those, some of those studies, sorry to say this, that they are available for children as well and this is important.
- Yes.
- Even from six years on, so we are happy that we can run those studies in children.
- Yeah. No, absolutely. And I see Moisa has joined. Hi, Moisa. Thank you for contributing. Erica wants to know about combination of two biologics. We have used various combinations for two different diseases in the same patient, but also two biologics for the same disease. So, so far we have not run into any problems. And one question here that goes a little bit along these lines, will we be moving to targeted and personalised treatment? Absolutely. We are already thinking about endotype specific treatment, you know. And if you break this down and you learn more about the pathomechanisms and get targeted treatments for the different pathomechanisms that make patients have urticaria, well, you end up with personalised medicine, personalised treatment. We're not there yet, but I do predict that we will, in the future, pick one treatment for one group of patients and another treatment for another group of patients.
- But we are going in the right direction because think about the guidelines. A personalised medicine is also if you can say, okay, we treat every three weeks or we need a higher a dosage and we want the companies that we can decide for each patient the dosage. And this is important that we have studies to show this.
- Yes.
- And this is personalised medicine as well.
- Absolutely. Absolutely. Do we go higher than 300 mg? Petra? Yes.
- Yes,
- Yes, of course. Look, we-
- And we shorten the duration as well.
- Which comes down to the same thing. No, sometimes we do both. The best thing you can do for a patient who does not respond to standard dose to omalizumab is give it more and give it more often. And this is not very different from what we've been saying about antihistamines for the last 20 years, no? We need the higher dose or we should use the higher dose when the standard dose doesn't work.
- Yeah. And it works.
- That is because-
- It works if we do it.
- It works. Oh, yeah, yeah. It works. And it is safe. And we could do it for a long time and we should do it for a long time in the absence of something better.
- Yeah.
- No? I will not be saying this in 10 years when we will have a choice of different ones that may even at standard dose be better than omalizumab. But right now this is the best thing we can do for patients and that's what we should do. And that's exactly also what the guideline says.
What’s next in CSU care? From endotyping to emerging therapies, this forward-looking update highlights what to is yet to come. View transcript .
