Looking after yourself
Information on managing common symptoms
Everyone with scleroderma develops some skin changes. However, the severity of the problem varies greatly between people. The most common skin problem is dryness and cracking caused by the skin thickening that is a feature of scleroderma. Ulcers such as finger ulcers are also a typical symptom. Here are some potential scleroderma symptoms that you may develop, and some ways to cope with them.
Consultant Dermatologist at The Royal Free Hospital, Dr Cate Orteu provides excellent advice relating to skincare. Please follow the link to watch Dr Orteu's Facebook Live Q&A.
Tightening of the skin is a real problem in scleroderma.
There are several medicines that can help. These would normally be prescribed under the supervision of a hospital specialist. New medicines are constantly being developed, which one day may provide a safe and effective solution.
In addition to drug treatments, physiotherapy and exercises are important to maintain skin movements around joints.
Warm paraffin wax baths can also be useful to relieve tight, painful hands and to enable easier exercising. Soaking in warm water with a few drops of a liquid paraffin-based oil may help to soothe and relax painful hands and feet.
Many patients with scleroderma develop an ulcer at some point. Prolonged or very frequent Raynaud's spasms can damage areas of tissue leading to ulcers, which are basically breaks in the skin.
Ulcers usually appear on the tips of fingers and toes or over pressure points, for instance over joints where the skin is especially stretched. These can be painful and prone to infection.
Ulcers may also occur on the legs, often following trauma, such as a knock with a shopping trolley. Try to avoid accidents like these if you can. Small changes such as wearing trousers or a thicker pair of tights or socks may be enough to prevent the skin from being broken. If a leg ulcer does develop, it can take longer to heal because the skin is not as healthy.
Ulcers should be dressed regularly. Sometimes an ulcer requires daily dressing but often two to three times per week is enough. Dressings help in several ways; they alleviate pain, contain any discharge, and prevent dirt and infection from entering the wound.
There are many different dressings available to try to provide the correct moisture level at the wound bed. Again the choice of dressing will be dictated by the type of ulcer ie finger ulcer. For ulcers on the fingers and toes a dry dressing is often all that is needed.
Healing may be promoted by helping the blood to circulate freely using drugs such as vasodilators which can be given in oral forms such as Nifedipine, or intravenously as prostacyclin (Iloprost®). The intravenous form is only available from certain specialist rheumatology units, but can have good effects on difficult ulcers on the fingers and toes.
Ulcers may sometimes become infected and will require a course of oral antibiotics such as flucloxacillin.
Many people experience dry and irritable skin. Generally dry skin is not healthy skin. Protecting your skin when you are outdoors and regular daily use of moisturisers can help solve this problem.
Moisturisers are either creams or ointments. Creams are based on water which means they are pleasant to use and soak into the skin well. However, they are not usually as effective as ointments, which form an occlusive barrier on the skin and help to trap in your skin's natural moisture.
“Greasy" creams such as Diprobase® offer the best of both worlds and are to be recommended. There are many cosmetic moisturisers on the market containing extra additives, but these are often very expensive and there is little evidence they confer any special benefit. Products containing more than 10% urea can be effective but can sometimes be irritating.
Bath emollients can be very helpful in keeping the skin moist. It is a good idea to apply your chosen moisturiser once you have dried yourself after a bath. Try to avoid harsh soaps and extreme water temperatures when bathing.
Itchy skin is another common problem for some people with systemic sclerosis. If regular moisturising does not help, then other measures can be tried. Speak to your doctor and visit our treatment page for more information.
Telangiectasia is a symptom where burst blood vessels, visible as small red spots, develop on the face and hands. Understandably, many patients are keen for treatment.
Pulsed dye laser treatment can often be helpful. This new technology utilises short bursts of high energy light to obliterate the broken blood vessels. This treatment will cause some stinging sensation on the skin and will leave some bruising for seven to ten days afterwards. It may take three to four treatments to work fully. This form of treatment is generally available from specialist hospital departments, and may require special funding.
Cosmetic camouflage is an effective alternative to cover the telangiectasia. Changing Faces offers tremendous help with this, and your local dermatology department can put you in touch with a trained volunteer.
A troublesome scleroderma symptom that develops for some people is calcinosis. Calcinosis is a collection of insoluble calcium salts within or beneath the skin. It often occurs in people with systemic sclerosis, especially with the limited type. Calcinosis tends to occur over pressure points – at the fingertips, for example.
Usually calcinosis is obvious on examination, and so no special tests are required. However, if your doctor is not sure then an x-ray may be arranged – this will demonstrate calcinosis very clearly.
If calcium deposits cause no discomfort, then it is quite safe to leave them alone. However, if they are unsightly, are uncomfortable or ulcerate and become infected, then they can be removed by simple surgical techniques. Unfortunately, there is no guarantee that the deposits will not reappear.
Calcinosis can be hard like chalk or semi-liquid. Occasionally the deposits can discharge from the skin spontaneously. Paraffin wax can help to speed this up by softening the skin.
Sometimes infections can develop around an area of calcinosis, requiring treatment with antibiotics.