Suggested self management

General

All the suggestions here are suggestions from Pemphigus and Pemphigoid patients and are intended to supplement the care being provided by your Dermatologist or other medical specialist. Under no circumstances should they be regarded as an alternative to the drugs that have been prescribed for your disease.

Serious lesions require prescription medication and you must consult your dermatologist

Everyone reacts differently to different treatments, so if one doesn’t work for you, then try something else. If you find a product or approach that works for you and isn’t listed here, then let us know.

It is always worth asking for other’s opinions on the discussion sites, including Facebook, Rareconnect , etc.

These are chronic diseases and it is easy to forget the treatments tried and progressions of the blisters, etc. We strongly advise that you keep a log of your symptoms and medication, as well as any possible triggers.

Oral Care

Since this is a very vulnerable site and the source of much pain potential, it is worth considering your diet. Please have a look at the separate section on foods.

Ensure that you exercise good dental care. Consult your Dentist and make sure they are aware of the damage that their interventions can produce, but make sure you keep your teeth and gums clean, and have a regular appointment with the hygeinist. Clean teeth will help to prevent desquamative gingivitis

Anaesthetic (analgesic) mouthwashes are available if your mouth is very sore and are particularly helpful if used before meals. Difflam is helpful

Antiseptic mouthwash or gel may be recommended to help with plaque control, particularly at times when your gums are sore. Peroxyl mouthwash daily is useful or chlorhexidine twice weekly

There are several proprietary treatments that may help, but many people find that rinsing their mouth with hydrogen peroxide is very helpful. Gengigel is good, and there is a new product called Gelclair.

Try to avoid products containing Sodium Lauryl Sulphate (SLS) or Sodium Laureth Sulphate (SLES).

According to Professor Richard Guy, professor of pharmaceutical sciences at the University of Bath: SLS is “a chemical that is a known skin irritant and a commonly used excipient in personal care and household products.” His study found: “The fact that SLS is able to reduce the SC thickness of normal skin significantly following repeated, yet rather brief, application suggests an even more damaging action on diseased skin, the barrier function of which may already be compromised.”

Tsang, M. and Guy, R. (2010), Effect of Aqueous Cream BP on human stratum corneum in vivo. British Journal of Dermatology, 163: 954–958.

The list below is not exhaustive and does not come with any guarantees or specific recommendations.

Toothpaste (SLS/SLES free)

Biotene (for dry mouth)

Bioextra Moisturising Toothpaste (for dry mouth)

Baby BioXtra gel toothpaste

Corsodyl

AloeDent toothpaste range

Greenpeople toothpaste range

 

Mouthwash (SLS/SLES free)

Biotène Moisturising Mouthwash

Bioxtra Mouthrinse

AloeDent mouthwash

Gengigel Mouthrinse

SLS/SLES-free soap suggestions for lips:

Green People No Scent Soft Lips

Jason Lips Bee Healthier

Burts Bees Beeswax Lip Balm

Lavera basis sensitive lip balm

These are only a small sample of products and should not be viewed as an exclusive listing. However, I hope you find something here to suit you. You may even be able to ask for some of the specialist products on prescription from your GP.

Nasal Care

Keeping the nose clean and comfortable is often difficult, but it can help to rinse out your sinuses or use olive oil to lubricate the nasal mucosa. A drop of baby shampoo in the sinus rinse on a weekly basis can also help to wash away crusts and scar tissue.

Products which may help are Neilmed, Sinus Rinse, Sterimar, Olive oil in a dropper bottle and Neti-pots. All of these should be available from a large chemist or many can be obtained on-line.

Nasal Douching

Douching (rinsing the nose with salty water) is important as it keeps the nose clean, washes out mucus, helps reduce inflammation and infection and therefore can help relieve nasal symptoms. It is a safe, natural way to help wash crusts and mucus from your nose. The salty water helps to pull fluid out of any swollen lining of your nose helping you to breathe. This also helps to open up the sinuses.

The following is a solution for you to make at home. All the ingredients are easily available from local shops or supermarkets.

Ingredients

 ½ teaspoon salt

 ½ teaspoon bicarbonate of soda

 ½ pint of warm clean water

 

Method

 Mix the ingredients together

 Fill a large syringe or the NeilMed Sinus Rinse bottle (see below)

 Stand over a sink or in the shower/bath

 Keep your head straight

 put the nozzle of the syringe/ bottle in one nostril

 Try to aim the nozzle towards the back of your head

 Squirt half the mixture into one nostril and then repeat on the other side

 The mixture should come into your mouth – spit this out

 If you swallow the mixture it will do you no harm

 Blow your nose gently

 Rinse your nose in this way two or three times a day

 After douching rinse the syringe/ bottle in warm, soapy water

Alternative method

 Pour some of the solution into the palm of your hand and sniff it up into each nostril over a sink

Please note

This may all feel a bit odd initially and occasionally the mixture may cause some light slight burning, but this should stop in a day or 2, so do try to stick with it

Commercial preparations can be purchased from chemists or over the internet:

Sterimar Nasal Spray

NeilMed Sinus Rinse

Neti pots (which look like a very small watering can) can also be used as a very effective delivery system. You can buy on the internet or from yoga shops!!

How to take your nasal medication

Taking your nasal medication correctly can be a bit awkward but is vital as it allows it to work properly.

 Blow your nose gently to remove mucus from your nasal passages

 ideally douche the nose (see above)

 gently shake the bottle (if using sachets break in half)

 If needed ‘prime’ before using (see instructions with medication)

Either:

The ‘Mecca’ position

 Whilst kneeling on the floor place your head between your knees in what is known as the ‘Mecca’

position

Or:

The ‘Bed’ position

 Lying on your back on a bed hang your head back over the edge of the bed so you are looking at the bottom of the wall

 If using drops or sachets drop the medication into the nose

 If using a spray aim the nozzle toward the back and outer side of your nose making sure to direct the spray straight back, not up into the tip of your nose

 You may have hold the bottle ‘upside down’ (so it is in fact the right way up)

 Gently breathe normally through your nose

 Avoid sniffing, swallowing, sneezing or blowing your nose if possible immediately after using the spray

NB: If you are using your nasal spray correctly, the medication should not drip from your nose or down the back of your throat

Eyes:

It is critical to obtain an early diagnosis and find the immune-suppressant treatment that will halt the progress of Ocular Pemphigoid, in particular. The damage can be rapid and is progressive and the drugs regime will be managed by an Ophthamologist.

However, there are some things that you can do to ease the pain caused by damaged eyes.

Firstly, do not allow inward pointing eyelashes to scratch the surface of the cornea. A set of tweezers with a light incorporated is a very handy ally, along with a powerful magnifying mirror. Some people find it very difficult to do this themselves, so you might need to recruit a friend with a steady hand or arrange to make a regular visit to the eye clinic.

Blepharitis (where the eyelids become inflamed and may be infected) is a common problem. A warm compress on the eyelid two or three times for around 5 minutes a day is helpful and can be soothing. A hot flannel will suffice, or an eyebag, such as the MGDR which is heated in the microwave can be used.

A daily regime for blepharitis is to scrub the lash line (NOT the inner side of the lid) with a cotton bud dipped in boiled water. The use of boiled water containing either baby oil or bicarbonate of soda is sometimes recommended but is probably no more effective than boiled water alone. A commercial product called Blephaclean may also work well for you.

For dry eyes, it might be worth looking at this link http://www.dryeyezone.com/

 

Skin:

Use moisturisers that are free from SLS (see mouthcare)

SLS/SLES-free moisturisers suggestions:

  • Faith In Nature replenishing moisturising cream
  • Jason Aloe Vera Ultra-Comforting Moisturizing Crème
  • Lavera Basis Sensitive : Organic Moisturising Cream
  • Dr Hauschka Rose day cream or Moisturising day cream
  • Biotherm Aquasource skin perfection
  • L’Occitane Shea butter
  • Baby lotion from GreenPeople or Lavera
  • Naked Skin Thirst Aid 12 Hour Moisturiser
  • Liz Earle Skin Repair Moisturiser
  • Miracell serious skin support cream
  • Dermol 500 lotion (can be used a wash and moisturiser and is antiseptic)

Some people have reported an allergy to formaldehyde and formaldehyde releasers and recommend:

  • Nivea products including shampoo
  • Clarins skincare