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Ocular Cicatricial Pemphigoid

OCP 

What is Ocular Cicatricial Pemphigoid (OCP)?

Ocular cicatricial pemphigoid (OCP) is the eye disease affecting patients with mucous membrane pemphigoid (MMP). The most up-to-date term for the condition is ocular mucous membrane pemphigoid (ocular MMP).

OCP is a rare, potentially sight-impairing autoimmune disease affecting the conjunctiva. The conjunctiva is the transparent mucous membrane lining which covers the white of the eye and the undersurface of the eyelids. In OCP the conjunctiva becomes red, inflamed and progressively scarred, leading to inturned eyelashes.

“Ocular” means eye, “cicatricial” means scarring, and “pemphigoid” is an autoimmune blistering disease.

OCP can be isolated to the eye alone (in 18 to 50% of patients with eye disease). More commonly it occurs as part of the whole-body condition called mucous membrane pemphigoid (MMP), which causes painful blistering, inflammation & scarring of the moist surfaces of the body (known as mucous membranes) including the mouth and gums, the lining of the nose, oesophagus (the swallowing tract), larynx (voice box), genitals, rectum, ear, eyes and skin. About 70% of whole-body MMP patients have eye involvement.

The following information is provided as a guide only. Careful assessment and treatment by an eye specialist (ophthalmologist) who has the expert training and experience to accurately determine your diagnosis and best treatment approach is important.

What causes Ocular Cicatricial Pemphigoid (OCP)?

OCP is an autoimmune disease where the body’s immune system is overactive and mistakenly attacks otherwise healthy tissue, causing blistering, inflammation and scarring. Examples of other autoimmune diseases include rheumatoid arthritis and lupus.

Ocular cicatricial pemphigoid can be triggered by drugs or eye drops, or occasionally occurs following other diseases such as Stevens Johnson Syndrome, but in the majority of patients the trigger is not identifiable. The overactive immune system produces antibodies which mistakenly recognize parts of the body as foreign, leading to blistering damage, inflammation and scarring.

OCP is not contagious and not affected by diet or lifestyle.

Who is usually susceptible to OCP?
OCP predominantly affects adults aged 40 – 70, with women affected slightly more often than men. However it can occur in 20-30 year olds, and also in children.
What are the symptoms of Ocular Cicatricial Pemphigoid (OCP)?

The commonest symptoms of OCP are:

 

  • Inturned eyelashes (trichiasis) rubbing the eye ***

 

  • Red, gritty sore or dry eyes with sensitivity to light

 

  • Conjunctivitis (red sticky eye) that keeps returning despite courses of antibiotic eyedrops

 

  • Droopiness and closing of the eyelid

 

*** If you have inturned eyelashes that often need to be pulled out, it is essential to have a careful assessment by an eye consultant who is expert in diagnosing ocular cicatricial pemphigoid, to evaluate the underlying cause of the inturned eyelashes. ***

How will I know if OCP is affecting other parts of my body?
Symptoms of mucous membrane pemphigoid (MMP) affecting other parts of the body including mouth ulcers, bleeding gums, nose bleeds, skin rash or blisters, difficulty swallowing, a hoarse voice, blood in the motions, genital sores and difficulty hearing. It is important to let your OCP specialist know if you are experiencing any of these symptoms.
How is OCP diagnosed?

A small sample of tissue (biopsy) is taken from the eyes and usually also the mouth. These biopsies are evaluated under a fluorescence microscope and tested for antibodies associated with MMP. Whilst biopsies from skin and mouth MMP lesions are less than 10% likely to give false negative results, unfortunately biopsies from the eye can give a false negative result in 30-50% of cases. So a positive result from the eye confirms the diagnosis, but a negative result from the eye does not necessarily mean that the diagnosis is not MMP. In a proportion of patients with negative biopsy results, treatment with immunosuppressive therapy (which suppresses an overactive immune system) in a similar manner to patients with positive biopsy results, may be necessary.

A blood test may also be used to detect the antibodies in the circulation, but they are detectable in less than 30% of ocular MMP patients.

If it is likely that you will require immunosuppressive medication (which suppresses an overactive immune system), Ms Saw will request that you have baseline pre-treatment blood tests (including a full blood count, electrolytes & renal function, liver function tests) to establish if there are any pre-treatment abnormalities which require investigation or treatment, or which may alter her decision regarding which immunosuppressive medication would be best for your situation. These blood tests are usually done at the time that the biopsies are taken.

Once a diagnosis of OCP is made, you may be referred to a Dermatologist, an Oral Medicine specialist and/or an Ear, Nose & Throat (ENT) specialist, depending on your symptoms. Multi-disciplinary care is essential for successful management of OCP/ MMP.

How is OCP treated?

Because it is an autoimmune condition, treatment of OCP requires strong oral medication as tablets or injections, called immunosuppressive therapy (which suppresses the overactive immune system). This treatment may be required for several months, years or indefinitely. Regular blood tests are required to check for unwanted effects of treatment in the first weeks to months of treatment. Immunosuppressive medication used in OCP include mycophenolate, cyclophosphamide, methotrexate, and dapsone. Limited courses of oral prednisolone (steroid) may also be used.

 

Eye drops cannot alter the progressive nature of the condition – only immunosuppressive medication can do this – but steroid drops may be used for short periods to reduce inflammation. Long term use of steroid eye drops can lead to eye infections, glaucoma and cataract so they are not used long term in OCP.

 

Dry eye is common in OCP, due to both (a) scarring and (b) Meibomian gland blockage. Lubricating eye drops/gel/ointment to maintain moisture on the eye, are essential to treat the dry eye.

 

Blepharitis and Meibomian gland dysfunction is common in OCP, and worsens dry eye and eye inflammation.

  • Daily hot compresses with eyelid massage are essential to express “oily tears” from blocked Meibomian glands, to treat dry eye in OCP.
  • Courses of oral Doxycycline or Lymecycline help to reduce inflammation, unblock Meibomian glands and improve tear film quality.
  • Taking omega 3 fish oil supplements has been shown in some studies to improve Meibomian gland function and dry eye.

What can I do?

  • Hot eyelid compresses and massage to express “oily tears” to the surface of your eyes once every day, as part of your daily hygiene routine, will make your eyelids and eyes as healthy as possible.
  • Keep your eyes moist with lubricating drops, gel or ointment – avoid letting dryness cause further damage to the eye.
  • Use your eye drops and take the immunosuppressive medication as instructed by your specialist
  • If any medication makes you feel very unwell, stop it and contact your OCP specialist.
  • If eyelashes are rubbing your eyes, either have them removed by a local optometrist or A&E unit, or enlist the help of a relative or friend using tweezers & magnifying glass. Trying to do it yourself can be difficult. Eyelashes rubbing the eyes can cause an ulcer on the cornea that then gets infected and leads to irreversible sight loss.
  • Stop smoking and reduce alcohol intake to recommended limits

What is the long term disease course in OCP?
In a few patients, the condition can go into remission for 1 year or more and the immunosuppressive medication can be stopped. However the majority of MMP patients continue on oral immunosuppressive medication for life.
Will the immunosuppressive treatment make me feel unwell?
All medications potentially have side effects. If the Ocular Cicatricial Pemphigoid disease itself is making you unwell, immunosuppressive medication is prescribed to relieve this. Most people tolerate immunosuppressive medication well. If you are having side effects from the medication then the dose of the medication could be reduced, or switched to a different medication, in order to find the medication which controls your OCP with minimum side effects.
Is there any treatment which can put the disease into remission?
The only medication which has been reported to put Ocular Cicatricial Pemphigoid into remission for more than 1 year is cyclophosphamide, which is effective but can cause side effects. 
Can I go blind?
Unfortunately some patients can permanently lose their eyesight due to OCP causing permanent scarring of the cornea, the clear front window of the eye, as a consequence of severe dryness, corneal infection or damage to limbal stem cells.

 

What research is currently being carried out in OCP?

Ms Saw is currently involved in planning several research projects involving OCP:

 

  • A laboratory research grant investigating inflammatory dendritic cell pathways in an in vitro model.

 

  • A randomized clinical trial of Rituximab in treatment-recalcitrant OCP.

 

If you would like to receive more information about, or would like to become involved in any of the research projects we would be delighted to hear from you.

 

 

 

 

Useful links:

 

PEM Friends (for people in the UK who suffer from Pemphigus or Pemphigoid) http://pemfriends.co.uk

The International Pemphigus and Pemphigoid Foundation http://www.pemphigus.org

The British Association of Dermatologists http://www.bad.org.uk

 

Valerie Saw has treated hundreds of patients with OCP and is one of the most experienced UK experts in Ocular Cicatricial Pemphigoid.

 

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    After another search on the Internet and looking at London consultants, I noticed Ms Saw had an amazing CV and had Dry Eye as one of her areas of expertise. My first visit to Valerie in March 2015, instantly gave me the hope I was seeking. She was so understanding, reassuring and kind. Valerie took time to investigate and diagnose my symptoms fully and I came away with a new treatment regime offering various options, as part of a plan for improving my condition in the short and long term. As one of my treatment options, Valerie carried out Cautery of the lower tear ducts and fitting of a punctual plug in one of the upper.

    In 2016 my eyes are now far more comfortable and I am slowly reducing medication. I am using a good combination of drops and ointment and continue with a hot massage routine.
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  • Ms Saw is an outstanding surgeon. Very clear information and individual attention as I had long standing conjunctivitis and blepharitis as well as myopia. Felt fully prepared for the surgery and extremely confident in her skill. Delighted to wholeheartedly recommend both the procedure and Ms Saw. Can’t believe I didn’t have this done years ago!

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  • I was so afraid of this operation but Ms Saw has a calm and gentle manner which is so reassuring to the patient. Her skills are outstanding – I can’t remember being able to see from early childhood, but because of Ms Saw’s abilities a miracle has occurred and I can see when I open my eyes. I am so grateful to her.

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    Tony Millward

  • I went to a number of eye clinics who all failed to spot my cataracts. Valerie was quick to diagnose and treat my various needs and swiftly achieved great results. If you are worried or in need of advice or quality care I would recommend Valerie.

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    Taharul Islam

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    Mrs N

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    Alexander Collis

  • Had my surgery over a year ago. Currently still no issues and have better than 6/6 or 20/20 vision. Miss Saw was very thorough and that gave me the confidence to go ahead with the surgery. She also explained that if I had any issues after surgery to contact her immediately. That alone gave me confidence I was in good hands. The surgery was quicker than I expected. Before long I suddenly could see with a lot of detail. Also to note Miss Saw is very gentle as well. Best thing I have ever done and better still with such an excellent surgeon.

    Sarah Datson

  • I had lens replacement (IOL, RLE) surgery to fix short-sightedness in Feb/Mar 2013. I’ve had my first annual check up everything is fine. I’m extremely happy with the outcome and would happily recommend this surgery to anyone, especially if you have severe short-sightedness. Valerie Saw is not only highly qualified, but helpful, kind, gentle and patient as well and I highly recommend her to anyone considering this type of surgery.

    Louise De Kock

  • I highly recommend undertaking laser surgery with Valerie. I had a very high prescription (-8) and was wearing spectacles and then contact lenses since I was 5 years old. I was a bit apprehensive at the start but Valerie was very reassuring from the beginning. I received all the information I wanted allowing me to make my choice. The surgery (in May 2016) didn’t take long at all and the discomfort only lasted a couple of hours. I was provided with a range of drops including anesthetics drops against the pain which were very efficient. After a few hours, I was seeing and my vision settled very quickly after then. I was driving my son to school after 48h. Valerie gave me her mobile number allowing me to call her, anytime (even during the weekend) if I had any concerns. This was really reassuring. She is making herself available for her patients and is very caring. My vision is now perfect, which is an amazing and crazy feeling! Whenever friends mention laser surgery, I encourage them to see Valerie as I know they will be in very safe hands. The clinic facilities at AVC are very clean and modern, as you would expect for private facilities. You are very well looked after all way through.

    Lauren A.

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    Sarah Dean

  • I could not be happier with my decision to have laser eye surgery to correct short-sightedness/ astigmatism performed by Miss Saw. Miss Saw is professional, calm and reassuring. She talked me through the procedure which took around 10-15 minutes one afternoon. I woke up the next morning and could see without glasses or lenses for the first time in 30 years. A year on I have 20/20 vision, no problems driving at night or otherwise. Brilliant!

    Julie Brownson

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    Carla Finlayson

  • What a lovely lady! What a fantastic surgeon. My husband has only had one good eye since birth, and that was getting worse and worse. He had to wear glasses all the time and it makes things like wearing goggles for skiing and workshop tasks difficult. He went to a couple of laser surgeons to find out if he could have something done to this one eye, but, they wouldn't even consider it in case something went wrong. However, we went to see Miss Saw and she didn't see any problems, she only saw solutions. He now has 20/20 vision in that eye and sees better than he has since his 20's. It was easy, friendly and a comfortable experience for both of us. Can't praise her enough. Wonderful, she has changed his life.

    Carole Jones

  • I had absolutely no idea of what to expect when I discovered cataracts in my eyes. And I was living abroad. On my first visit, during my initial consultation Valerie explained in very simple but concise terms what to expect and was able to put my mind at ease. She also fully outlined what type of resulting vision to expect including all the main side effects. I came back to London 3 months later and we were able to operate on both eyes, and I left London a week later, fully armed with instructions and eye drops. Due to being abroad I called once just to discuss over the phone how I felt my vision was and to ensure that I was on track. Once again even from afar Valerie was spot on with advice and suggestions. Six months on and I have had my follow up visit. My eye-sight is perfect, the side effects are minimal. I would highly recommend Valerie Saw to anyone considering eye surgery; you can be certain of being in good, professional hands with optimum results.

    Bola Awoyinka

  • After being blind as a bat for over 30 years, I finally gave into having laser eye surgery. After researching the issue, I decided on Moorfields as the best option. This has been endorsed by my whole experience from start to finish. Miss Saw and her team were professional, dedicated and supportive through the whole process and I wouldn’t hesitate to recommend them as the way to go if you're thinking of this treatment. Thanks for giving me my sight back!

    Andrew Rowley

  • Well taken care of. Surgery went very well and aftercare excellent. I have 20/20 vision, the best thing I have ever spent my money on. Would recommend LASIK eye surgery.

    Pasqualina Rasile

  • Brilliant Service. Everyone was kind and helpful. Can now see my golf ball after playing my shot. Highly recommended.

    David Pollicott

  • Dr Saw completed my laser eye surgery in November 2016. Her team completed a thorough pre-assessment of my eyes and determined I was suitable for surgery. On the day of the surgery I was walked through the process step-by-step to ensure I was comfortable with what was going to happen, as well as information about how long different things would take.
    I’ve had several follow up appointments and have reached out to Dr Saw multiple times with questions, all of which have been responded to promptly. My vision is now better than 20/20.
    
My wife is also looking to get laser eye surgery and we'll definitely be going back to see Dr Saw!

    Graham R.

  • Ms Saw and her staff were outstanding and very helpful. Treatment and post-care were easy. I would highly recommend her and this clinic to anyone considering the procedure. Well worth it

    TCK
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