CSU videos: Understanding CSU

 

Doctor and TV presenter Pixie McKenna talks about chronic spontaneous urticaria (CSU) in this series of patient-support videos.

Understanding urticaria and CSU by Pixie McKenna

 

Learn more about CSU, starting with its definition and typical symptoms through to its diagnosis and long-term impact on quality of life.

Understanding urticaria and CSU - transcript

[00:00:38] - [00:00:55] 

Hello, my name is Dr. Pixie McKenna and I am a practicing GP in the UK. This film has been developed to help the general public, and people suffering from chronic spontaneous urticaria, or CSU, to learn more about more about this often debilitating condition.

[00:04:58] - [00:05:08] 

Urticaria, of which CSU is a chronic specific subtype, is characterised by an itchy red rash often accompanied by painful swelling.

[00:05:45] - [00:05:59] 

These symptoms are easily confused with allergy but only twenty percent of urticaria is caused by allergy. Most urticaria, including CSU, has no known trigger or cause.

[00:07:19] - [00:07:27] 

Urticaria is one of the most common reasons people seek the advice from GPs, specialists and even the emergency services.

[00:07:43] - [00:07:50] 

Urticaria is defined as chronic, when the symptoms persist for 6 weeks or longer and spontaneous when there is no known trigger or cause. 

[00:08:54] - [00:09:09] 

As such, CSU describes a skin condition characterised by red itchy, swollen wheals, also known as hives, that occur spontaneously and last for longer than six weeks but may even last for months or years. 

[00:09:22] - [00:09:29] 

Symptoms can be localised or spread, wide spread around the body, and they may change on a daily basis.

[00:09:35] - [00:09:46] 

Between 40-50% of people who suffer from CSU also suffer from deep tissue swelling in the skin, known as angioedema.

[00:10:07] - [00:10:23] 

It's estimated that between 300-600,000 people in the UK suffer from CSU at any one time. To put that into perspective, that is the entire population of Manchester.

[00:11:24] - [00:11:35] 

Women are twice as likely to be diagnosed as men and although it can occur at any age, it's usually diagnosed between the ages of 20-40.

[00:12:46] - [00:12:59] 

A flare up can mean you may miss work, or you’re less productive at work, or you simply want to avoid social activities. This condition has a significant impact on the quality of life.

[00:14:06] - [00:14:25] 

Urticaria usually consists of an intensely itchy rash which looks a bit like hives, which doctors refer to as wheals. So when you see it, it might resemble a nettle rash and it can also be associated with pain and burning.  

[00:14:46] - [00:14:54] 

Although each wheal may only last for hours, new ones usually start to appear as the old ones fade.

[00:16:09] - [00:16:26] 

With CSU the itch can be very persistent and may be most notable at night. It can also be associated with deep tissue swelling which doctors refer to as angioedema and this will mainly affect the face, hands, feet and neck. 

[00:16:38] - [00:17:08] 

CSU can be diagnosed by taking a detailed history and going through your symptoms with your doctor. It's very helpful to provide a symptom diary so they can get the exact diagnosis. Tests include tests of blood, tests of skin and tests of urine. Some patients will require further evaluation, for specialist treatment by means of a referral to a dermatologist and allergy specialist or immunologist. 

[00:19:21] - [00:19:44] 

There are several treatments available to help people with the symptoms of CSU. If you visit your GP you are highly likely to be prescribed an antihistamine medication and this will help many people but not all. Some patients do require a referral to a specialist who can provide more targeted treatment to manage their condition. 

[00:20:05] - [00:20:13] 

International experts agree that the treatment of CSU should result in patients being symptom free.

[00:21:04] - [00:21:18] 

If you suspect you have CSU, or you have been recently diagnosed and would like more information and support then visit the Allergy UK website where you can find out a host of information about urticaria and CSU.

 

Questions for your doctor about CSU by Pixie McKenna

 

Find out how you can make your appointments with your doctor more productive in order to improve your CSU treatment and disease management.

Questions for your doctor about CSU - transcript

[00:22:34] - [00:22:52] 

Hello, I am Doctor Pixie McKenna and I am a practicing doctor in the UK. This is the second installment in a series of films about understanding urticaria, and this film helps patients prepare to speak to their doctor about CSU.

 

[00:23:42] - [00:23:52] 

If you are worried you have chronic spontaneous urticaria or you have already been diagnosed, it's very important to see you doctor for support and advice.

 

[00:24:00] - [00:24:10] 

When visiting the doctor, it's very important to bring all the medications you take, including supplements, so that they can make a proper assessment and develop a management plan for your condition. 

 

[00:24:19] - [00:24:29] 

You might like to give the doctor the following information so that they can make a proper diagnosis or they can guide you in terms of treatment if you've already been diagnosed. 

 

[00:24:59] - [00:25:05] 

How long have you had urticaria? Does it itch? How often do the episodes happen?

 

[00:25:15] - [00:25:31] 

How long do the rashes or wheals last? Do they move around your body? How big are they? Maybe you would like to take a picture to show the doctor, and do they leave purple or brown marks after they've disappeared.

 

[00:25:39] - [00:25:51] 

Do you ever get angioedema, which is swelling in the deep tissues of the skin? Is there are associated pain or burning with the condition? 

 

[00:25:55] - [00:26:08] 

Is there any particular time of day that is worse for you and particular type of situations or seasons or are there any other triggers that you might associate it with? Be that activities or things you eat.

 

[00:26:27] - [00:26:33] 

Tell your doctor how it affects your daily activities, and how it impacts on your sleep. 

 

[00:26:50] - [00:27:32] 

There are various reasons why you might be referred to a specialist, and that could be a dermatologist, an immunologist or an allergy specialist. The first reason might be that your doctor has already diagnosed CSU, but the treatment they've prescribed doesn't seem to be working. The second reason is that your doctor may feel that it is more appropriate to have your condition managed in a specialist setting where they have access to a wider variety of treatments. The third reason can possibly be that the diagnosis is unclear and therefore your doctor wants you to see a specialist to get a formal diagnosis and a management plan.

 

[00:28:51] - [00:29:19] 

When you see the specialist you might like to ask why you've actually been referred. You may also like to ask why you've been prescribed particular medications or which medications are available to you to improve the management of your condition. It's also really important to ask how you are going to live with this condition on a day to day basis and what's in place to support you in doing this.

 

[00:32:07] - [00:32:29] 

Your consultant might ask you to record your condition using a system called the urticaria activity score or UAS. This records the severity of the itch and the severity of the rash. It is scored from 0-3; you give a score for 0 if there aren't any symptoms and a score of 3 if it's very severe.

 

[00:33:34] - [00:34:00] 

Both of these figures are added together to give you your daily UAS score. These scores are calculated for a week and then they are tallied at the end of the week with a maximum score being 42. It is generally considered that your chronic spontaneous urticaria is under control if you score 6 or less over the period of a week. 

[00:35:09] - [00:35:32] 

You might also want to consider whether there are any triggers to your urticaria. CSU by definition is not caused by an allergy but often the two conditions are confused. To help your doctor make a diagnosis, it's very important to relay to them any triggers that you may have noticed. 

 

[00:42:26] - [00:42:45] 

Urticaria can be triggered by a whole host of things; this ranges from infections, to exercise, to changes in temperature, to food and even prescribed medication. So if you feel there is a trigger it's very important to discuss this with the doctor. 

 

[00:43:10] - [00:43:19] 

Do remember to tell your doctor if you have any previous allergies and known history of reacting to something or a family history.

 

[00:43:49] – [00:44:05]

International experts agree that the management of CSU should result in a patient being symptom free. If you feel that your CSU is not being managed appropriately because you aren't symptom free then discuss this with your doctor. 

 

[00:45:19] - [00:45:31] 

A questionnaire can be used as a guide when you talking to your GP, this is available in the Allergy UK urticaria leaflet, the website of which is on your screens now. 

How to cope with your CSU by Pixie McKenna

 

This video offers advice for newly diagnosed CSU patients on monitoring and managing their symptoms as well as tips for finding support from others.

How to cope with your CSU - transcript

[00:47:59] - [00:48:12] 

Hello, my name is Doctor Pixie McKenna and I'm a GP practicing in the UK. 

 

[00:48:17] - [00:48:27] 

This is third in a series of films about understanding urticaria to help people who suffer from CSU and their family better cope with the condition. 

 

[00:49:00] - [00:49:18] 

Receiving a diagnosis of CSU can actually sometimes be a relief because it means you know what's wrong with you and you can get on a treatment plan to help you improve your condition. To many patients it means they can start to live their lives again. 

 

[00:51:19] - [00:51:49] 

The advice I would give to somebody who is newly diagnosed is to be aware of all the help and support that is out there. This can come through your GP, it can also come through your specialist who might be a dermatologist, an immunologist or an allergy specialist. It's worth remembering that CSU is not an allergy - however, Allergy UK are very well placed to provide you with advice and information about how to cope and manage the condition. 

 

[00:52:02] - [00:52:13] 

Listening to other people who have recently been diagnosed is also very helpful because it makes you realise you are not alone in suffering from this condition. 

 

[00:52:32] - [00:52:53]

In order to maintain control over your physical symptoms I would recommend you do a symptom diary. This is very important as it will help your doctor or specialist work out the best way of treating and managing your condition and also give them a steer as to how that condition impacts your daily life. 

 

[00:53:08] - [00:53:26] 

In your symptom diary I would suggest you use the urticaria activity score or UAS for short, which we discussed in a previous video. This will help you and your doctor gauge how severe your condition really is and how best to work out how to manage it. 

 

[00:54:05] - [00:54:15] 

It's also really important to understand the medication that you have been prescribed and its impact on your condition so that you can keep your doctor informed of your progress.

 

[00:57:01] - [00:57:16] 

If you feel the treatment you've been prescribed to manage your CSU doesn't seem to be working, go back and talk to your doctor because there may be other treatments available that would help manage your condition better. 

 

[01:00:09] - [01:00:26] 

The symptoms of CSU can be particularly severe at night and that can impact your sleep leaving you exhausted the following day. That's why it's really important to get into a relaxed state and unwind before you lie down for a night’s sleep. 

 

[01:01:09] - [01:01:24] 

It's quite common for patients who suffer from CSU to feel that their condition limits their physical activity. During a flare up, I would advise that you limit your physical activity as it can exacerbate things further. 

 

[01:04:24] - [01:04:55] 

When you suffer from CSU you often feel that you are all alone and you find it difficult to cope. The good news is that you aren't - there are a whole host of forums out there where you can exchange stories and discuss triggers and treatments with other sufferers, for example on the Allergy UK website. If you’re still feeling down and you can't cope then I would strongly advise you to go and have a face to face consultation with your GP, who’s always there to help you. 

 

Date of preparation: December 2015   XSU15-C030m

Updated: 24-11-2015