Living with lp - a patients guide

LI CHEN PLANUS affects around 1-2% of the population and is thought to be an auto-immune disease which can affect the skin, o ral or genital mucosa and more. The cause is unknown. U K Lichen Planus (UKLP) was set up by Bridie Nelson in November 2007 to fill the gap in support for those living with the disease Lichen Planus (LP). The group is open to members worldwide, h owever treatments discussed are based on those used in the UK. T his support group is run by those living with LP for those living
with LP. We understand only too well the isolation and fear of li ving with a disease your family and friends have probably never h eard of. So we are able to offer support and true understanding of what it feels like to be newly diagnosed with this disease as well a s offering practical tips and ideas on how to cope day to day. U K Lichen Planus brings those living with LP together to share We also encourage members to take an active role in their treatment and we welcome women and men with all forms of So if you are one of the 1 - 2% of the population living with LP, join u s to share your experiences, ideas and tips in a safe and LICHEN PLANUS
Li chen planus is an inflammatory skin disease which commonly causes an itchy rash of small purplish bumps. Often the arms, legs, b ack or inside of the mouth are affected, however it can also affect the genital area including the vagina or penis. Lichen planus may o ccasionally involve the nail, hair and scalp or the skin around the anus (back passage). Very rarely, it may involve the oesophagus or tear ducts. It is possible to have the disease in one area without WHAT CAUSES IT
The cause of lichen planus is unknown. We know that it is NOT c aused by infection, hormonal changes or ageing, and is not because of anything that you did or didn't do. It results from nflammation in the skin. There may be a problem with our mmune system, the system that protects a person from infection. In lichen planus the system may be overactive, making proteins hat cause inflammation in the skin, mouth or in the genital area. This is referred to as an autoimmune reaction. Occasionally medicines can start this reaction. Why the lesions develop in some places and not others is not known. Lichen planus is NOT contagious and cannot be passed to a sexual partner. There is no absolute cure for lichen planus. However, in some c ases, lichen planus seems to come and go of its own accord and it is possible that it will disappear completely. There are many t reatments used to treat lichen planus and treatment needs to be s elected to fit your problem. Different people respond to different things. The medications will control but often will not cure the li chen planus. In some cases, usually oral and genital LP, treatment is a long process and close follow up with you and your caregiver is U sually the disease can be treated with creams and ointments, although some disease if causing no symptoms, will not need any reatment. Generally topical steroid ointments are used safely in this condition. These may be strong (potent) steroids (Dermovate) o r milder ones combined with tetracycline (Trimovate) which may h ave an additional helpful effect. Erosive disease can be more difficult to control but most respond to strong topical steroid o intments or steroid and antibiotic creams. Some of the new creams and ointments to suppress the immune reaction such as acrolimus (Protopic) or pimecrolimus (Elidel) may also be used. Occasionally oral or ׳other' medication to suppress the immune For scarring and narrowing of the vagina and / or the entranceway, d ilators may be advised. Rarely, surgery is needed. SKIN LP has shiny flat-topped bumps of different sizes, purple in
colour and often crossed with white lines called Wickham's striae. T hey are usually found on the inner wrists, forearms and ankles, but can affect any part of the skin. LP may be very itchy. New esions appear while others are clearing. Occasionally the skin discolours after the lesion has cleared and this can remain for s ome time. This form of LP often clears on its own. KIN LP, how you can help yourself:
Wash with plain warm water, no soap or bubble bath etc. Shampoo your hair over a basin if possible, to avoid contact Use an emollient to moisturise, some find Aloe Vera gel helps to soothe the itch, especially if used straight from the w hat members say. “Real people, sharing the pain, sharing solutions” ORAL LP almost half of the cases of LP, the mouth is involved, and
is often the only area to be affected. LP in the mouth may appear a s white or red patches, white streaks, ulcers or painful red gums. It may not cause any symptoms or only be sore occasionally. Some s picy or acidic foods or hard foods may make the soreness worse. A fter appearing it is often present for life. O RAL LP, how you can help yourself:
1. Avoid eating strong spicy foods, chilli, curry, citrus fruit, tomatoes or strawberries - anything acidic e.g. fruit juices. 2. Avoid sharp foods e.g. crusty bread or crisps. 3. Avoid drinking alcohol, spirits in particular. 4. Try sticking to fairly bland food when lesions are painful, porridge, softly boiled eggs, mashed potatoes etc. 5. Keep to your usual toothpaste if you can, otherwise in the short term, try an alternative like Aloe-dent which is very mild and non irritating. 6. Use a mouthwash which doesn't contain alcohol eg Dentyl, or an alcohol free chlorhexidine mouthwash and keep your mouth as clean 7. Your dentist may want to see you every couple of months if you have erosive oral LP, maintaining gum health is important to keep teeth healthy, and finding a hygienist who is familiar with LP management VULVAL / VAGINAL LP soreness, burning and rawness are very
c ommon symptoms. If the outer layers of the skin break down (erosions), these areas appear moist and red.There may be a white acy pattern on the vulva.This pattern can also be seen around the edges of the erosions. The vulva may appear pale white or p ink/red. Scarring with loss of the inner lips (labia minora) can be s een. The clitoris may be buried under scar tissue. If the vagina is involved, intercourse can be painful. Erosions can occur inside the vagina in a patchy or generalized pattern. Some women have a sticky, yellow or yellow-green discharge, which c an be bloodstained, especially after intercourse. If the two surfaces of the vagina heal together, the vaginal opening can b ecome narrowed. This is one reason why intercourse can be painful. Sometimes it is difficult for a doctor to perform an internal e xamination. Rarely, the skin may have thickened areas. These PENILE LP shiny flat-topped bumps are common on the penis and
u sually occur around the tip (glans). Sometimes the bumps can form rings. The erosive form of lichen planus is less common in men but may occur. This may increase the risk of penile cancer. GENITAL LP, how you can help yourself:
1. Wash with plain warm water, no soap or bubble bath etc. and use a 2. Shampoo your hair over a basin if possible, to avoid contact with 3. Use a plain emollient / aqueous cream and apply liberally before and after spending a penny, aqueous cream can also be used to wash with and is extremely soothing if chilled before application. 4. Some members find that ice packs are useful to reduce itching and swelling - if ice packs are not available, a pack of frozen peas will do the same job but do not apply directly onto the skin as this may 5. Use a good lubricant, there are many on the market such as YES, Astroglide, V Gel and Sensilube to name a few, these products are 6. Try stockings instead of tights and go without underwear wherever UKLP has opened a door to a wealth of information on a disease I What is the outlook (prognosis) for people with lichen planus?
n general, the outlook is good. Without treatment, about half of cases of lichen planus affecting the skin clear within 6-9 months. It is unusual for the rash to last longer than 18 months. Oral disease ends to persist. Erosive disease of the vulva or penis tends to be more persistent. However, lichen planus can persist longer in T his is mostly in people who develop lichen planus mouth ulcers, a nd lichen planus of the vulva or penis. What should I watch for?
Erosive lichen planus can carry a very small risk of developing local ypes of skin cancer, the risk is about 2%. Regular self examination is very important and if you become aware of any changes, or persistent, non-healing areas in your mouth or genital area, these hould be reported to your doctor. If detected early treatment is very successful. It is important that your lichen planus is treated “I thought I was alone, and that consultants were my only hope – b ut UKLP gives me practical advice from others with LP” Dr Susan Cooper, Dr John Hamburger and Dr Ruth


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