Pemphigus Vulgaris Network

Welcome to the website of the Pemphigus Vulgaris Network, the United Kingdom support group for people living with Pemphigus and Mucous Membrane Pemphigoid.

This page includes the following sections:

What is Pemphigus Vulgaris? What is the PV Network? How is PV diagnosed? How is it treated? Will it go away?
Types of Pemphigus Complementary Medicine FAQs Clinical Trials, New Treatments and Research How To Find Out More  

It is with great sadness that we must report the passing of Siri Lowe, who founded the PV Network and ran it for 15 years. Siri was a great help and support to us, and will be sadly missed.

Back to topWhat is Pemphigus Vulgaris?

Pemphigus Vulgaris (PV) is one of a group of rare, relapsing auto-immune diseases causing blistering of the skin and mucous membranes (eg mouth, nose, throat and genitals).

In pemphigus disorders the immune system makes a mistake, views cells in the skin and mucous membranes as foreign and an immune response is triggered. Affected individuals have high concentrations of antibodies produced by the immune system. These bind to a specific protein in the skin (desmoglein 3 and sometimes desmoglein 1), causing interference with the skin's normal function. The cells no longer stick together and become separated from each other. This causes the burn-like lesions or blisters that are typical of PV. Symptoms often occur first in the mouth, but lesions can cover a significant area of skin. The disease is non-infectious.

Although it is known that desmoglein antibodies cause PV, it is not known why people develop these autoantibodies in the first place. Genetic factors are believed to be important but it is likely that there are other factors which help trigger PV.

Back to topWhat is the PV Network?

The Pemphigus Vulgaris Network is a voluntary, not-for-profit, group started in 1997 to provide information and support for people living with pemphigus and their relatives, friends and carers. We also provide an information resource for doctors and other medical professionals. We are part of the British Association of Dermatologists' patient support group organisation and are members of the Skin Care Campaign, National Voices (previously called the Long-term Conditions Alliance), and the All Party Parliamentary Group on Skin.

We are entirely unfunded and rely on donations. If you find this website useful and would like our work to continue, we would appreciate any donations (howevever small). Cheques should be made out to the Pemphigus Vulgaris Network and sent c/o 14 Lime Court, Gayton Rd, Harrow HA1 2YD.

Contact information for the PV Network is given at the end of this page.

What can we offer you?

In general, we find the best way we can help is if you also have a look at the International Pemphigus and Pemphigoid Foundation website and then see if you have any further questions or if there is anything you want clarified. Usually a phone call is the best way to talk through things you're wondering about. Sometimes people want to talk to another person with pemphigus just to share a common experience. If we do not know the answer to a question, we'd hope to suggest ways you could find out.

We leave it up to individuals to contact us as and when it suits them. But if anyone ever wants any current news about what is happening in the UK, just phone us up and we'll tell you about current work, ongoing projects etc. Owing to lack of resources, we do not organise get-togethers but leave that up to individuals to organise themselves (we have a list of members who are happy to be contacted by anyone with pemphigus).

Back to topHow is Pemphigus Vulgaris diagnosed?

Pemphigus Vulgaris is rare and most general practitioners (GPs) have never seen it. So it's essential the diagnosis of PV is made by a dermatologist (a hospital doctor specialising in skin conditions) or another medical specialist in dealing with PV. Early diagnosis is important because the sooner you get treated the sooner you can start to feel more comfortable before it becomes too severe.

There are three things which might suggest PV:

There is another useful test called indirect immunofluorescence (sometimes called an antibody titre test). This measures PV antibody levels in the blood.

The most accurate test to measure PV antibodies in the blood is called the ELISA test but it is not available in all laboratories. It measures the level of antibodies in the blood (titre). This is useful for monitoring how active the PV is, which might mean changes in your treatment and therapy.

People may not be aware that several new government initiatives are being introduced in England which may affect their access to dermatology hospital care. In particular "Clinical Assessment and Treatment Services" (CATS) is a scheme by which Primary Care Trusts (ie GP practices) aim to reduce referrals to secondary care (ie hospitals). This works by re-routing referrals back into a Primary Care facility, probably a clinic run by GPs with Special Interest in dermatology. When pemphigus vulgaris is known to be the diagnosis, the dermatology guideline is that a patient should be seen at a hospital by a Dermatology Consultant. However, it may become difficult to see a Dermatology Consultant in the first place to get a correct diagnosis and confirming tests. So, if pemphigus is suspected you may have to insist that you are initially sent to a hospital, rather than to another GP in a community dermatology clinic.

Great changes are being introduced to the NHS in the near future. In some parts of the country changes about commissioning are already happening as Primary Care Trusts are disbanded.

Most pemphigus patients feel strongly that they want their care to take place in a hospital setting, usually a Dermatology Department but sometimes an Oral Medicine Department. This is because pemphigus, even when seemingly stable and controlled, can flare suddenly and it is much quicker to get things under control if you're already a hospital patient than if you have to wait for your GP to refer you back to your original hospital consultant. If there are exceptional circumstances where a stable pemphigus patient is being looked after in a community setting, for example if the nearest hospital department is too far to travel to, their care should still be under the supervision of a dermatology (or oral medicine) consultant.

Back to topHow is it treated?

There is no specific cure available, but the condition is controllable with heavy immunosuppressive treatment.

The standard treatment is with corticosteroids, which are often started at high doses (eg. 60-100mg per day), together with immunosuppressive drugs (Azathioprine, Cyclophosphamide, Mycophenolate mofetil, Cyclosporin, Methotrexate). Other treatments sometimes used are: Dapsone; Gold injections; Tetracycline, minocycline or doxycycline combined with niacinamide; plasmapheresis (plasma exchange); intravenous immunoglobulin (IVIg). Both plasmapheresis and IVIg treatment are only used in rare instances.

Treatment is generally started with prednisolone and immunosuppressant tablets. In cases where this is not sufficient to control the pemphigus, intravenous methylprednisolone plus cyclophosphamide is another option that may be used. This is called pulsed therapy and is administered by a drip, usually during out-patient visits. Pulsed therapy is a lengthy process, probably three days per month for at least six months to a year, sometimes longer.

A new group of medicines called biologics are being developed by a number of pharmaceutical companies. Rituximab is a biologic (used to treat non-Hodgkin’s lymphoma). Some consultants are now using it for hard to control cases of pemphigus vulgaris (see ‘Clinical Trials, New Treatments and Research’) This is a relatively new treatment for PV and is not yet thought of as an “officially named” treatment.

Drug doses are reduced slowly to the minimum required to keep the condition under control (which varies from individual to individual).

Topical therapies are sometimes given together with systemic drugs to help heal difficult erosions.

In the pre-corticosteroid era, PV was generally fatal. Even with steroids and immunosuppressives, it remains a difficult disease to treat and has a mortality rate of between 0 and 6%.

Back to topWill it go away?

No, not without treatment. Pemphigus vulgaris is an autoimmune disease, so it will not just disappear of its own accord.

However, with ongoing treatment, PV may eventually get better completely so that it does not flare-up when treatment is stopped. This is called being in complete remission. Sadly, some people never get complete remission and have to stay on relatively small doses of their medication to keep their PV under control. A small dose is typically 10mg a day of prednisolone but varies depending on your weight.

PV is a relapsing disease, which means that patients should expect to have flare-ups and other times when it gets better. Each flare-up can be worse or better than the last one. There is no way of knowing when these flare-ups might happen or how bad they could be but they most commonly occur in the first two years following diagnosis. However, some people find that a pattern of flare-ups continues as a permanent feature of living with pemphigus vulgaris.

Back to topTypes of Pemphigus

If you have been given a diagnosis but are not sure exactly what was said to you, your GP will be able to help you. Sometimes a hospital doctor may just talk to you about "pemphigus", but they will have written to your GP saying exactly which condition you have. Alternatively, ask your hospital specialist at your next appointment.

There are three main categories of pemphigus:

People need to be aware that different types of pemphigus will require different types of treatment. For example, pemphigus foliaceus may be treated primarily with topical steroids and a lower dose of oral steroids whereas pemphigus vulgaris is frequently treated with a higher dose of oral steroids.

PEMPHIGUS VULGARIS (PV)

The term "vulgar" means "common" and PV is the most frequently diagnosed form of pemphigus.

There are two main types of PV:

Mucosal PV: In this type, the mucous membranes are affected. This may include the mouth, nose, throat and genitals, but the skin is normal or rarely affected. Mucous membranes are the soft, moist areas of skin which cover or line the mouth, nose, throat, gullet, eyes, anus and genitals.

Mucocutaneous PV: Both the mucous membranes and skin are affected ('muco'- refers to the mucous membranes and 'cutaneous' means the skin).

PEMPHIGUS FOLIACEUS (PF)

In Pemphigus Foliaceus, blisters and sores do not occur in the mouth. Crusted sores or fragile blisters usually first appear on the face and scalp and later involve the chest and back.

Auto-antibodies are produced by the immune system but they bind only to desmoglein 1. The blisters are superficial and often itchy, but are not usually as painful as PV. In PF, disfiguring skin lesions can occur, but the mortality rate from the disease is much lower than in PV.

PARANEOPLASTIC PEMPHIGUS (PNP)

PNP is the most serious form of pemphigus. It occurs most often in someone who has already been diagnosed with a malignancy (cancer).

Fortunately, it is also the least common.

Painful sores of the mouth, lips and oesophagus are almost always present and skin lesions of different types occur. PNP can affect the lungs. In some cases, the diagnosis of the disease will prompt doctors to search for a hidden tumour. In some cases the tumour will be benign and the disease will improve if the tumour is surgically removed.

It is important to know that this condition is rare and looks different from the other forms of pemphigus. The antibodies in the blood are also different and this difference can be determined by laboratory tests.

Conditions confused with Pemphigus Vulgaris (PV)

Pemphigus is not Pemphigoid.

Pemphigus is not the same skin condition as Pemphigoid. There are two main kinds of Pemphigoid:

Bullous Pemphigoid

Mucous Membrane Pemphigoid (sometimes called Cicatricial Pemphigoid) including Oral Pemphigoid

For more information on Bullous Pemphigoid and Mucous Membrane Pemphigoid see www.pemphigus.org

Pemphigus is not Benign Familial Pemphigus, sometimes called Hailey-Hailey disease.

Some medical books refer to Hailey-Hailey Disease as 'Benign Familial Pemphigus' but it is not true pemphigus. This is because Hailey-Hailey is not an autoimmune disease, it is genetic. There are some similarities with PV but Hailey-Hailey is not caused by an auto-antibody, as in PV. For more information see www.bad.org.uk/patients

Back to topComplementary medicine

General Guidance

No alternative, herbal, or any other non-orthodox method is known to have been successful in treating PV itself, but some people think complementary medicine can help them deal with unwanted effects from the necessary drugs.

If you do decide you want to use complementary therapies, it is essential to find a practitioner who understands the seriousness of PV and the risks of changing your treatment.

It is vital that you continue your usual medical treatments. To refuse your usual medical treatments from your doctor is to risk PV getting more active and uncontrolled.

A good rule of thumb is: if an alternative/complementary therapist suggests stopping or changing your treatment, it's unlikely they understand about PV and they could be putting your life at risk.

Chinese Herbal Medicine and Western Herbal Medicine

The problem with most herbal medicine is that it may well increase the activity of the immune system. Yet in order to control Pemphigus Vulgaris it is currently thought necessary to suppress activity - the direct opposite. This is why most dermatologists would be extremely worried if people wanted to take herbal medicine instead of the drug treatments referred to in 'How is it Treated'.

Another problem is that Herbal Medicine does not view illness and disease in the same way as Western medicine. So a herbal practitioner may not even be able to tell you whether the medicine they are prescribing increases immune activity or not.

Patients should be aware that herbs are not necessarily safe just because they're herbs. They should be treated with the same respect as mainstream medicines. Unfortunately, there have been instances where some patients have suffered liver damage from herbal treatments and some imported herbal supplies have been contaminated with steroids.

Sometimes people choose to use Herbal Medicine to help them deal with the effects of the drugs. But this could only be done safely by still taking your usual drugs and working with an experienced herbalist who understands PV. Even then many people would feel it was very risky.

Acupuncture

Some people use acupuncture to help with nausea, pain and the side effects of treatment. If skin erosions are active it may be impossible for needles or moxibustion to be used (moxibustion is the burning of a herb on acupuncture points). However, it may be possible to use electro-acupressure, where nothing penetrates the skin. Again, it would only be safe to use acupuncture if you were also taking your usual drugs.

Homoeopathy

Most traditional doctors don't think homoeopathy works. By the same token, they may not be concerned if PV patients want to use homoeopathy. For those people who do believe homoeopathy works, this can be another way of helping to manage the unwanted effects of drugs. However, it would be essential to find a homoeopath who understood pemphigus and did not suggest you stopped your medicine.

Massage

If you do not have body erosions or broken skin, massage can be an excellent and safe way to help with joint and muscle pains from corticosteroids. Many people also think it helps them relax and helps manage problems like sleeplessness and anxiety. As before, you would need to find an experienced massage therapist who understood the seriousness of PV.

Back to topFrequently asked questions (FAQ)

Q1: I've been diagnosed with pemphigus vulgaris and started treatment. How long will it be before it works?

A: This varies from person to person. Once your doctor has found the drug regime that works best for you PV can often take up to six months to become stable and for you to be on the lowest effective dose. But PV is difficult to control and it may take longer. Sometimes it can take up to a couple of years for flare-ups to die down.

Q2: How long will I have to stay on the drugs?

A: Most people need to stay on a 'maintenance' dose permanently to keep their PV under control. Maintenance doses vary from person to person and your doctor will be aiming to get the dose as low as possible whilst keeping the disease controlled. Sometimes people manage to come off all drugs, without any symptoms. This may last for quite a few years, or maybe permanently.

Q3: I'm still on Prednisolone (10mg a day) and Azathioprine (50mg) and I still get occasional lesions. But my doctor says I'm in remission. If I'm in remission why do I still need to take any drugs and why do I still get lesions?

A: Sometimes doctors define 'remission' in a different way to a lay person. Lay people usually take remission to mean 'no disease activity and no need for drugs'. Doctors sometimes talk about PV being in 'remission', but they don't necessarily mean there is no disease activity at all or the disease is cured. It rarely means the patient no longer has to take their medication. The word remission is generally used to mean that the symptoms are controlled on treatment rather than the disease has gone.

It's confusing and the words 'controlled' or 'suppressed' would perhaps be easier to understand. The important thing is that even if you are told you are in 'remission', your medication should still be continued unless advised otherwise by your specialist.

Remember, in order to keep drug doses low as possible, it may be unavoidable that you get an occasional lesion. Treating you is like a juggling act - keeping drug doses as low as possible with as little active disease as possible.

Q4: The drugs make me feel nauseous. Is there anything that helps?

A: There are some acupuncture points on the inside of the wrist that seem to help nausea. Try using "Travel Bands" (developed to help travel sickness). They are cheap and can be purchased from large chemists. There are very clear instructions telling you how to use them. You may have to leave them on for several hours to get the best effect.

Some people find ginger herb tea helps minimise the nausea feeling. You can buy ginger and lemon tea bags in most health food shops, or add a slice of fresh ginger to hot water if you prefer. If the nausea is really difficult, see if your GP can prescribe anti-emetics (anti-sickness tablets) to help.

Q5: Will my children get pemphigus vulgaris?

A: There's absolutely no reason to assume they will. Although genetic factors are probably involved in PV, it's not hereditary. Very, very occasionally more than one person in a family has PV, but this hardly ever happens.

Q6: I'm on steroids and/or immunosuppressives and I'm exhausted most of the time. Is there anything I can do?

A: Unfortunately lots of people do find the drugs (and the illness) make them very tired. There's nothing you can do to stop this but you'll probably find it easier if you can try and structure daily life to include some resting time. Make sure the people around you understand the problem.

Q7: I've started taking steroids and I've gained lots of weight and have a puffy face. What can I do?

A: The puffed up face does go down as the steroid dose reduces. General weight gain is more difficult and weight control feels like a constant struggle. Nearly everyone gains weight, however disciplined they are about food. It's important not to get too worried about it, particularly at the start of treatment when the crucial thing is to get the PV under control.

For suggestions on diet and nutrition, look at the International Pemphigus and Pemphigoid Foundations's website www.pemphigus.org

Q8: I don't know if it's safe to go abroad or be in the sun?

A: If you feel well enough to go on holiday, why not go (and enjoy it). But if you're in the middle of a flare-up it's probably too risky to go abroad. If your condition flares up while you are abroad, you might need to be hospitalised and there might not be appropriate medical facilities in the place you are visiting. Also remember you'll need to declare your PV to get holiday insurance and you may not be able to get insurance on any pemphigus-related situations that come up.

Being in the sun is potentially dangerous. Not only is sunbathing now thought to increase your chances of skin cancer, but some researchers think ultra-violet light may also be a potential trigger for pemphigus.

So try to stay in the shade, wear a hat and wear clothes that keep you cool and cover your arms and legs. Remember to use a sunscreen of SF20 or above. People on immunosuppressants need to make sure they don't sunbathe (as skin cancer risk is increased).

However, lots of people with pemphigus vulgaris have gone abroad, taken sensible precautions and been fine.

Q9: I'm having a flare-up but when I phoned my hospital department the receptionist couldn't give me an appointment. How do I know when I need to see a doctor?

A: Once the pemphigus is controlled and you've been living with it for a while, you'll probably be able to recognise a bad flare-up, which may very well need your drug dose to be temporarily increased.

Unless you already have specific instructions from your dermatologist on what to do, contact the hospital and arrange to see the doctor as soon as possible. Most hospital Dermatology Out-Patient Departments in the UK have what is called an 'S.O.S' arrangement to enable pemphigus vulgaris patients with a bad flare-up to see someone quickly. You may have to remind the receptionist you are an S.O.S. patient. Alternatively try to get an earlier appointment with your dermatology nurse. If you still have no joy, ring the consultant's secretary and leave a message for the consultant to say that you are flaring-up.

Q10: Will I get osteoporosis from the steroids I have to take?

A: If you're on steroids it's normal practice to be given a calcium and vitamin D supplement to protect against osteoporosis. There are also special bone-building drugs called bisphosphonates that can be taken to help prevent bone loss. Ask your GP or dermatology consultant to arrange for you to see the appropriate specialist. You may need regular monitoring to make sure all is well. Medical evidence suggests that bone damage can occur within the first three months of steroid treatment.

Q11: I'm taking immunosuppressants. Does this mean I will always get lots of infections?

A: Once the disease is controlled and your medication is at 'maintenance' level, you should not get noticeably more infections than anyone else.

But because you are immunosuppressed it can be harder to get over them. For example, a bad cold may be a lot worse for someone on immuno-suppressives and may take a lot longer to get better.

You should try not to get dirt in any cuts or wounds. See your GP if you're worried about how something is healing.

Coming into contact with Chicken Pox can be dangerous if you have not had it before because it is more severe in immunosuppressed people. If this happens, and you start to feel ill, go to your GP immediately.

Q12: The prescriptions I need are so expensive. Is there a way to get the medicines cheaper?

A: Some people may be eligible for free prescriptions (e.g. if they are receiving Income Support). For those who are not eligible, you can save money by buying a three month or one year Prescription Pre-payment Certificate. You can pay for a 12-month PPC in 10 direct debit instalments. For more information phone 0845 850 0030 or look at https://www.nhsbsa.nhs.uk/help-nhs-prescription-costs/prescription-prepayment-certificates-ppcs

Q13: I've got pemphigus vulgaris in the mouth. The hospital suggested I shouldn't eat crisps or crusty bread. Why is this? Is there other food or drink I shouldn't have?

A: Pemphigus vulgaris makes the inside of the mouth very delicate and many people find that eating foods with sharp edges, like crisps or crusty bread, can tear open healing erosions or just be very painful. Food and drink affect different people differently, but it's fairly common for people to find that highly spiced food like curries are painful when mouth erosions are present. Some people also find that acidic foods, like tomatoes or oranges, are painful. The same thing can be true of drinks; sometimes people find red wine or acidic fruit juices (e.g. cranberry or orange) hurt. There's no general rule, you'll have to try things out in small quantities to judge if they are painful for you.

Nutritional factors may also be aggravating factors in pemphigus vulgaris flare-ups, see http://www.pemphigus.org

Q14. When I brush my teeth, my gums bleed and it's really painful. What can I do?

A: This is very common but keeping teeth clean is very important. Gum disease and rotting teeth can occur when you have PV, simply because it can be difficult to keep the teeth clean. Nevertheless, there are ways to help avoid these problems. Buy a soft, child's toothbrush and toothpaste for sensitive teeth (you may find strong minty toothpaste very painful). Fifteen minutes before brushing, swish some anaesthetic mouthwash e.g. Difflam, around the mouth for a minute or two to help reduce the pain of brushing. Avoid sweet, sugary foods that increase plaque formation.

It is important to see your dentist and dental hygienist regularly because they will be able to help you keep your teeth in good condition. An antiseptic mouthwash can help keep the gums in good condition.

Q15: My doctors sometimes talk about blisters and sometimes say erosion, lesion or ulcer. But it all seems to mean the same. Can you explain?

A: There is no general rule about what word to use.

A dermatologist's definition of both "erosion" and "ulcer" would be: "an area of skin in which the top layer is missing. The undersurface of the skin is visible and looks red, raw and sore, like a burn". But ulcers go deeper than erosions so, strictly speaking, erosion is the medically correct word to use in PV. A "lesion" is a word used to describe any abnormal area of skin, therefore the blisters and erosions that occur in PV can both be called lesions.

So you can see that from the point of view of a patient, there's no real difference between the three words.

Sometimes different words are used because they're describing what's happening at different stages in the process.

What happens first of all is that the action of autoantibodies causes a fragile blister to form. Because the blisters are so fragile they very quickly burst - particularly in the mouth - and what is left is an eroded area of skin (that looks as if the top layer has been scraped off). This is sometimes called an erosion, a lesion, a burn-like lesion, or an ulcer.

When doctors talk about a pemphigus ulcer they don't mean the ordinary sort of mouth ulcer which lots of people get (usually treat with something like Bonjela) and which will go away of its own accord.

You will probably find that if you talk to anyone except a pemphigus specialist about "mouth ulcers" or "blisters", they won't understand the pain and seriousness of what is involved. So lots of pemphigus patients say they communicate better with people by referring to "erosions", "burn-like lesions", or just "lesions".

Back to topClinical Trials, New Treatments and Research

There are quite a few trials going on in different parts of the world looking at drug treatments to control pemphigus. Since pemphigus is a rare disease and the trial protocols may require a large number of patients, individual trials often involve doctors in more than one centre and sometimes in more than one country.

Some trials aim to look at the effectiveness and safety of relatively new drugs that have not previously been used to control pemphigus eg rituximab, infliximab and etanercept. Some trials look at using conventional pemphigus medicines but prescribed in different ways (eg pulsed v. oral prednisolone).

To find out what clinical trials are happening in the UK look at the website for the UK Dermatology Clinical Trials Network (http://www.ukdctn.org). To get an idea of clinical trials happening internationally, try the US National Institutes of Health website ClinicalTrials.gov (www.clinicaltrials.gov/ct2/results?term=pemphigus).

As far as we know, there are no clinical trials happening in the UK at the moment (March 2009) but two UK centres participated in a recent international trial to compare the effectiveness of prednisolone prescribed with either mycophenolate mofetil (CellCept) or placebo (dummy drug). The trial has now completed recruitment and the results are being collected and analysed.

From the phone calls and letters we receive from patients it would appear that dermatologists in some hospitals are using the newer medicines more frequently. For example, some dermatologists now prefer to use mycophenolate mofetil (CellCept) rather than azathioprine.

Some consultants now use Rituximab to control pemphigus vulgaris when other drugs are ineffective or side effects are causing problems.

Rituximab is an anti CD20 antibody which basically means that it targets the antibodies in the immune system that cause the splitting of the cells in the epidermis (the outer compartment of the skin) away from each other. The drug is given by an intravenous infusion.

The protocol for how Rituximab is administered to begin with is usually either two infusions two weeks apart or four weekly infusions. Some doctors prefer the first method as they think less infusions for the patient is a preferable way of doing things.

After the initial infusions your consultant would be judging if and when you needed a repeat infusion. As always, this will depend on an individual patient’s response. In general it seems that most patients receiving Rituximab need treatment again in a year or so. This further treatment may only be one infusion. A repeat might be needed for a few years. Using Rituximab for pemphigus vulgaris is relatively new. So the way it is administered may change as doctors use it more.

There are also doctors and scientists involved in research on pemphigus itself. Their hope is that a better understanding of, for example, what happens in the immune system to make pemphigus become active, will eventually lead to new or better treatments that control pemphigus with less difficult side effects.

In the UK the Pemphigus Vulgaris Network has been pleased to help Dr Karen Harman find volunteers for her research project looking into immune and genetic factors that might increase the chances of developing pemphigus. The response from people on our mailing list was very enthusiastic - in the first section of her research, several years ago, over 50 people replied and gave a blood sample. The second section of her research is currently taking place and in 2008 more people from our mailing list helped by supplying blood samples. The data is currently being analysed and prepared for publication.

Dr Harman and other researchers may well be undertaking future research projects. If you are not on our mailing list but think you might like to be involved in future research, do telephone the Pemphigus Vulgaris Network so we have a note of your contact details.

Back to topHow do I find out more?

You can contact the PV Network by writing, with a stamped, addressed envelope, to the Pemphigus Vulgaris Network, c/o Mrs Penelope Sherwood, 14 Lime Court, Gayton Rd, Harrow HA1 2YD

Or you can telephone 0208 863 3735. (Owing to lack of funding we are unable to return phone calls).

We are an International Pemphigus and Pemphigoid Foundation associate and to find out much more about pemphigus you can look at their in-depth website: http://www.pemphigus.org

You can find in-depth information on the website of the British Association of Dermatologists, www.bad.org.uk, by looking at the "Pemphigus Vulgaris" section of their Patient Information Gateway. This section was a collaboration by the Pemphigus Vulgaris Network, Dr Karen Harman and a dermatology nurse who specialises in pemphigus. So the information covers a wide variety of issues and is intended to provide answers for both patients and medical professionals.

You may also like to look at NHS Choices, 'Real Stories', to read about a particular patient's experience: http://www.nhs.uk/Conditions/pemphigus-vulgaris.