Scleroderma treatment (Systemic sclerosis (scleroderma) management)

What is scleroderma treatment?

Scleroderma, or systemic sclerosis, is a long-term autoimmune condition that causes the body to make too much collagen, leading to thickening and hardening of the skin and, in some people, scarring in internal organs. It also affects the small blood vessels, which is why Raynaud's phenomenon (fingers turning white, then blue, then red in the cold) is so common.

There are different types. Localised scleroderma (morphoea) mainly affects the skin. Systemic sclerosis is divided into limited and diffuse forms; the diffuse form involves more skin and carries a higher chance of internal organ involvement, including the lungs, heart, kidneys and digestive system.

There is no cure, and treatment cannot reverse damage that has already happened, but it can ease symptoms, slow the disease in some people, and — importantly — detect and treat organ involvement early. Because the condition is uncommon and can be complex, care is best led by a specialist team.

A central part of treatment is regular monitoring of the lungs, heart, kidneys and blood pressure, because some serious complications can develop quietly. Catching them early gives the best chance of treating them effectively.

Types, options & approaches

There may be different ways to do this. The right approach depends on the clinical question and your circumstances.

Easing symptoms vs protecting organs

Both run together. Feeling well does not remove the need for organ monitoring, because some complications are silent at first.

Preparing for your treatment

• List your symptoms, especially Raynaud's, finger ulcers, reflux, breathlessness, and any change in skin tightness.
• Bring your current medicines, and mention any that affect blood pressure or circulation.
• Tell your clinician about breathlessness, a new cough or reduced exercise tolerance, as these can signal lung involvement.
• Ask how your lungs, heart and kidneys will be monitored and how often.
• Have your blood pressure checked and learn what reading should prompt urgent advice.
• If you smoke, ask for help to stop, as smoking worsens circulation and finger ulcers.
• Mention any pregnancy plans, as scleroderma and some of its medicines need careful planning.

What happens

Your specialist assesses which type of scleroderma you have, how active it is, and whether any internal organs are involved. This uses your history, examination, blood tests, and tests such as lung function, an echocardiogram (heart ultrasound) and blood pressure and kidney checks.

Treatment is then tailored. Common symptoms such as Raynaud's, reflux and skin tightness are treated directly. Where the disease is active or organs are involved, immune-modulating or organ-specific medicines may be used, often with input from lung, heart or kidney specialists.

A core part of care is ongoing monitoring of the lungs, heart, kidneys and blood pressure, because catching complications early matters. You are reviewed regularly by the specialist team, with the plan adjusted as the disease changes, and you are given clear advice on warning signs — particularly a sudden rise in blood pressure — that need urgent attention.

Is this treatment right for me?

A good consultation should explore whether it's the right choice for you now — including reasons to wait or consider something else.

Before you decide

Use this as a shared-decision checklist. The aim is not just “can this be done?”, but whether it is right for you, now, with the risks and alternatives clearly understood.

Scleroderma's most serious risks come from internal organ involvement — particularly the lungs, heart and kidneys — which can develop with few early symptoms. This is exactly why regular monitoring matters. Learn the warning signs of scleroderma renal crisis (a sudden severe rise in blood pressure, headache, visual disturbance or reduced urine) and seek urgent help if they occur. Tell your team promptly about new breathlessness, a slow-healing finger ulcer, or signs of infection.

Published figures to discuss

Scleroderma varies greatly between people and types, so reliable single percentages for benefit are limited and outcomes are individual. The most important risks are organ complications — particularly lung, heart and kidney involvement — which can be serious but are often treatable when caught early through monitoring. This is why follow-up testing, rather than symptoms alone, guides care.

These are literature figures, not a personalised prediction. Your own risks and likely benefits depend on your circumstances, your health, and how your care is carried out and followed up.

What happens afterwards

There is no physical recovery from the treatment itself. Symptom treatments tend to help over days to weeks, while protecting organs is a long-term aim achieved through ongoing treatment and monitoring rather than a one-off course.

• Some persistent symptoms despite treatment, especially Raynaud's and skin tightness
• Gradual rather than instant benefit from immune-modulating medicines
• Ongoing need for lung, heart and kidney monitoring when well
• Cold-triggered Raynaud's attacks that improve but may not fully stop

Aftercare

• Take prescribed medicines regularly and keep up skin care and warmth for circulation.
• Attend all monitoring tests — lung function, heart scans, blood pressure and kidney checks — even when you feel well.
• Monitor your blood pressure if advised, and know the reading that should prompt urgent help.
• Keep hands and body warm, and stop smoking, to protect circulation and reduce finger ulcers.
• Report new or worsening breathlessness, cough or reduced exercise tolerance promptly.
• Look after finger ulcers and report any that are slow to heal or look infected.
• Watch for and report signs of infection while on immune-suppressing medicines.

• Warm clothing, gloves and hand-warming measures for Raynaud's
• A blood pressure plan and target if you monitor at home
• Your next lung, heart and kidney monitoring tests booked
• Reflux and skin-care treatments to hand
• Knowing the warning signs of renal crisis and lung involvement
• A named specialist team contact for urgent concerns

⚠ Get urgent help if…

• A sudden severe rise in blood pressure, severe headache, visual disturbance or much-reduced urine — possible scleroderma renal crisis, a medical emergency
• New or rapidly worsening breathlessness, or coughing up blood
• A finger ulcer that is spreading, very painful, or shows signs of infection (redness, pus, fever)
• Chest pain, palpitations or fainting
• Signs of serious infection while immune-suppressed: high fever, shivering, feeling very unwell
• Difficulty swallowing that is suddenly much worse, or food sticking

Who to contact: your clinician, clinic or test provider first (keep their number to hand). For urgent advice when you can't reach them, call NHS 111. In an emergency, call 999.

General guidance — it doesn't replace the specific advice your specialist gives you.

Results & realistic expectations

A good result is stable symptoms — manageable Raynaud's, controlled reflux, and skin and joints that work as well as possible — with organ monitoring showing no new or progressing involvement, or with any involvement caught and treated early. Treatment cannot reverse damage already done, so protecting what is healthy is the aim.

Progress is judged over time by the specialist team using your symptoms and monitoring tests, not by a single appointment. Feeling well is reassuring but does not replace organ monitoring, because some complications are silent until tests detect them.

Scleroderma is a lifelong condition, and treatment and monitoring continue indefinitely. Disease activity often changes over time — the diffuse form may be most active in the earlier years — and treatment is adjusted accordingly. Protecting organs and managing symptoms remain the long-term focus throughout.

Related tests, treatments or support

Scleroderma care frequently involves several specialists working with the lead rheumatology team — for example lung and heart specialists for breathing or pulmonary hypertension, kidney specialists for renal involvement, gastroenterologists for gut symptoms, and physiotherapists and occupational therapists for function. Blood pressure, circulation and nutrition are managed alongside the disease.

Follow-up & long-term care

You will be reviewed regularly by the specialist team, with lung function tests, heart scans, blood pressure and kidney monitoring at intervals they set, often at least yearly and more often when the disease is active. Any new organ symptom prompts earlier assessment, and care is coordinated with the other specialists involved.

• Regular medicines for Raynaud's, reflux and any organ involvement
• Periodic lung function tests and heart scans (echocardiograms)
• Regular blood pressure and kidney monitoring
• Skin care, warmth and not smoking to protect circulation
• Ongoing review by the specialist team and any additional specialists

Repeat, follow-on and what comes next

• Treatment is adjusted over time as disease activity changes, rather than being fixed.
• Some people need to switch immune-modulating medicines because of side effects or limited benefit.
• Detecting new organ involvement often means adding specialists and treatments to the plan.

Ask what happens if the result is unclear or needs repeating, and what is included if further tests or follow-up are needed.

What good aftercare looks like

• A clear plan covering symptom treatment and scheduled organ monitoring, led by a specialist team.
• Written warning signs for renal crisis and lung involvement, with an urgent contact route.
• Coordinated input from lung, heart, kidney and gut specialists as needed.
• Support for Raynaud's, finger-ulcer care, skin care and stopping smoking, with named contacts.

What affects the cost

Costs vary a great deal between people and providers, and we don't publish prices. What matters is understanding what drives the cost and making sure your quote is complete. The main things that affect it:

• Specialist consultation fees and how many follow-up appointments are needed
• Organ monitoring tests such as lung function, echocardiograms and kidney blood tests
• Specialist treatments for Raynaud's or finger ulcers, such as iloprost infusions
• Immune-modulating or organ-specific medicines and their monitoring
• Input from several specialists (lung, heart, kidney, gut) when organs are involved
• Physiotherapy, occupational therapy and skin-care support

• The consultation fee and the expected number of follow-up visits
• Which organ monitoring tests are included and how often they are repeated
• The cost of infusion treatments such as iloprost, if needed
• The cost of any immune-modulating medicines and their monitoring
• What happens, and what it costs, if a serious complication develops
• How care is coordinated with the other specialists you may need

On the NHS? Scleroderma is usually managed on the NHS by a specialist team, with lung, heart and kidney specialists involved as needed; private care is mainly used for faster access or a specialist opinion.

You're entitled to your total cost in writing — including reports, follow-up and what happens if the result is inconclusive — before you decide.

Consent traps and marketing red flags

These are not small details. They are often where patients lose choice, time to reflect, or realistic expectations.

Choosing a specialist safely

• Check the specialist is on the GMC Specialist Register for this area.
• Make sure they work at a CQC-registered service, and look for membership of the relevant Royal College or professional body.
• You're entitled to time to consider and to have your questions answered before you agree — the specialist who looks after you should explain it, not a salesperson.
• Be wary of pressure: time-limited offers or deposits taken before you've had time to think are red flags, not bargains.
• You're entitled to your total cost in writing — including any follow-up — before you decide.

How Vuemedics verifies every consultant →

Take this to your consultation. A good specialist will welcome every one of these.

• Which type of scleroderma do I have, and how active is it?
• How will my lungs, heart and kidneys be monitored, and how often?
• What blood pressure reading or symptoms should make me seek urgent help?
• How should I manage my Raynaud's and protect my fingers?
• Which medicines might slow my disease, and what are their risks?
• Which other specialists will be involved in my care?
• Are you on the GMC Specialist Register for this area, and which Royal College or professional body are you a member of?
• Will you be the specialist who carries out my treatment, and who looks after me afterwards?
• What are the risks for someone like me, and how often do your own patients have a problem or need it repeated or redone?
• What does a realistic result look like — and what can this treatment not achieve?
• What are my options, including waiting, doing nothing for now, or choosing a different approach?
• Can I have written information, results and aftercare instructions in a format I can use, including any accessibility or communication support I need?
• What is the total cost in writing, including any follow-ups, and how much time do I have to decide?

Find a verified specialist for scleroderma treatment

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How we made this page

Medically reviewed by a GMC-registered consultant. Written in plain English, checked against NHS, NICE, GMC and relevant Royal College / specialist-society guidance, and kept under review. No clinic paid to appear on this page, and we publish no pricing. This is general information to help you prepare — it is not a substitute for advice from your own clinician. How we review our guides →

Source hierarchy: UK regulator and NHS/NICE guidance first, then relevant Royal College or specialist-society guidance, then peer-reviewed evidence for procedure-specific figures where available.

Sources & standards: NHS — Scleroderma Scleroderma & Raynaud's UK — Systemic sclerosis treatments Scleroderma & Raynaud's UK — Newly diagnosed with systemic sclerosis NICE — Skin involvement in systemic sclerosis: rituximab Versus Arthritis — Scleroderma

Reviews reflect patients' experience of care, not clinical outcomes. For procedure volumes and outcome data see PHIN.

Last medically reviewed 2026-09-21. Spotted something wrong or out of date? Report an error in this guide.