Systemic Sclerosis: Scleroderma Treatments UK

At present, there is no cure for systemic sclerosis, limited or diffuse. However, much can be done to help. The aims of treatment are:

  • To relieve symptoms.
  • To prevent the condition from progressing, as much as possible.
  • To detect and treat complications early.
  • To minimise any disability.
  • For the skin, moisturisers and stretching exercises help with dry or tight skin.
  • Raynaud's phenomenon symptoms are reduced by keeping the hands warm - for example, by using heated gloves. Medicines which open up the arteries to bring more blood to the fingers can be used to improve the symptoms. In the UK currently nifedipine is the only pill licensed for this. However, studies show other medicines can be effective, and some are used in the UK and elsewhere. These are medicines usually used for other conditions. They cause the blood vessels to widen (dilate) and this helps get blood to your fingers if you have Raynaud's phenomenon. These include:
  • Losartan.
  • Sildenafil.
  • A type of antidepressant medication called selective serotonin reuptake inhibitors (SSRIs).
  • Iloprost.
  • Stomach and gut problems can be relieved by medicines such as:
  • Omeprazole to reduce acid secretion.
  • Domperidone to help with stomach action.
  • Laxatives for constipation.
  • Medicines which help treat diarrhoea, such as loperamide.
  • If swallowing lumpy foods is difficult then it may help to have lots to drink with meals. Surgery may be required in difficult cases, particularly if partial blockage or bowel incontinence develops.

Treatment aim 2 - to prevent the condition from progressing, as much as possible

Treatments are used which suppress the body's immune system (because it is the immune system which is overactive in systemic sclerosis). Examples of these treatments aresteroids, methotrexate, cyclophosphamide, azathioprine, and mycophenolate mofetil. The medicines that are used will depend on the individual situation.

You should not smoke - because this is healthier for the blood vessels and lungs.

Regular monitoring is needed to check blood pressure, kidney function (with blood and urine tests) and lungs (which may need a scan). These tests may detect changes before any symptoms are noticed - and early detection allows early treatment.

Various treatments are available for different complications. These include:

  • Skin: dressings and antibiotic medicines are used for skin ulcers. Surgery may help with tight skin, nodules or ulcers.
  • Lungs: new medicines such as bosentan, sildenafil, ambrisentan, iloprost and epoprostenol have improved the treatment of pulmonary hypertension.
  • High blood pressure and kidney problems are treated with angiotensin-converting enzyme (ACE) inhibitors.
  • Thyroid replacement tablets are given for an underactive thyroid gland.
  • Tablets such as sildenafil or tadalafil for problems with erections (impotence). These may need to be taken regularly rather than as needed.
  • You may be more susceptible to infections, and so should receive antibiotics promptly for any infective illness such as a chest infection.

Treatment aim 4 - to minimise disability

  • If required, physiotherapists can advise on exercises to keep joints mobile and muscles strong.
  • If required, occupational therapists can advise on various aids (such as splints to support the joints) and can help with daily living tasks.
  • Regular dental checks are important if you have dry mouth symptoms.
  • Patient support groups, such as Scleroderma and Raynaud's UK (SRUK) can provide information and support.
  • Patient education/self-management programmes can help people to understand their condition and be more in control of their lives. For example, the Bath Scleroderma Education Programme run by the Royal National Hospital for Rheumatic Diseases in Bath, or the Expert Patient Programmes run by local health organisations.
  • You may be entitled to benefits if your daily activities are affected, or if you require extra help.