ENFew people arrive with scleroderma already named. They come with complaints that look unrelated for years: fingers turning white in the cold, tight skin on the hands, breathlessness on the stairs, food sticking on the way down. That gap between the first symptoms and a precise name is exactly why patients travel for clarification.
Scleroderma treatment in Germany starts with two questions: which form of the disease it is, and which organs it has reached. Below: how German hospitals answer them, the treatment approaches used and how the trip is organised. For the wider specialty, see rheumatology in Germany.
What scleroderma is, and why the form matters more than the name
Scleroderma is a disease in which the immune system drives excess collagen production. Collagen is the protein of connective tissue fibres; in excess, the tissue thickens and stiffens like a scar, which is called fibrosis. Small blood vessels narrow too: hence firm skin and poor blood supply to the fingers.
There are two large groups. Localised scleroderma affects the skin, in deep forms also the tissue beneath it, but not the internal organs; in systemic sclerosis, internal organs are involved. Within the systemic form, the limited and diffuse subtypes behave differently, and that decides what is watched first: raised pulmonary artery pressure is more common in the limited subtype, lung scarring in the diffuse one. The whole plan follows from the form, so it is settled before anything is prescribed.
The disease can reach the lungs (fibrosis or raised pulmonary artery pressure), the oesophagus, heart, kidneys, joints and tendons. Two patients with the same diagnosis can have completely different organs involved, so there is no “standard treatment for scleroderma”.
How the diagnosis is pinned down in Germany
The diagnosis is pinned down in steps: examination, capillaroscopy and antibody tests, then the organs. A detailed look at the skin and fingers is followed by nailfold capillaroscopy, a painless view of the tiniest vessels at the nail base under magnification. Blood is tested for antinuclear antibodies, which target the nuclei of the body’s own cells, and their subtype is identified, because the subtypes go with different courses of the disease.
The organs come next: high-resolution CT of the lungs, lung function testing including diffusion capacity (how easily oxygen passes into the blood) and an echocardiogram. Where pulmonary hypertension is suspected, pulmonary artery pressure is measured directly by catheter. The oesophagus is assessed, and kidney function and blood pressure are checked. This is not a “full body work-up just in case” but a check on the organs this disease affects most often, as set out in the systemic sclerosis guideline of the German rheumatology society.
Patients bring images, discharge summaries and laboratory results. Some studies are re-read or repeated on site, because both technique and date matter; this is routine, not distrust of the previous doctors.
What the treatment consists of
What is treated is not “scleroderma in general” but its specific manifestations. Active skin and lung involvement calls for drugs that dampen the immune response, known as immunosuppressants. Raynaud’s phenomenon (fingers whitening in the cold) and finger ulcers are treated with vessel-dilating drugs. Raised pulmonary artery pressure is treated separately, and involved kidneys are protected with drugs that lower blood pressure. A doctor decides which medicines and doses are needed.
Besides drugs, the plan includes treating reflux and swallowing problems, exercise therapy and dedicated hand therapy, and skin care. Stopping smoking and protecting the hands from cold are part of the treatment, not an aside. Badly affected joints and tendons call for rehabilitation.
In rapidly progressing diffuse disease, specialist centres discuss transplanting the patient’s own blood stem cells: a demanding procedure with risks of its own, suited to a narrow group of patients. A multidisciplinary team decides, and no cure can be promised from it.
Who looks after a patient like this
Scleroderma is managed by a rheumatologist, always alongside a pulmonologist, a cardiologist, a gastroenterologist and, where needed, a nephrologist, because treatment decisions here follow the state of the lungs and heart rather than the look of the skin. Among German rheumatologists are Prof. Martin Aringer, deputy director of Medical Clinic III at the Carl Gustav Carus University Hospital in Dresden, whose field is rheumatology, and Prof. Reinhard E. Voll, medical director of the Department of Rheumatology and Clinical Immunology at Freiburg University Hospital.
If the diagnosis was made at home, a second opinion from a German doctor is worth having: with this disease it more often changes the wording of the diagnosis and the list of things to monitor than the drug itself. Scleroderma is often confused with neighbouring rheumatological conditions; see lupus treatment in Germany and vasculitis treatment in Germany.
Frequently asked questions
How is localised scleroderma different from systemic sclerosis?
Localised scleroderma does not affect internal organs and does not turn into systemic sclerosis: it involves the skin and, in deep forms, the tissue beneath. Systemic sclerosis can reach the lungs, heart, kidneys, oesophagus, joints and tendons. So treatment of the localised form targets the skin and the tissue beneath, while in the systemic form the organs are checked first and the plan is built on the findings.
Can scleroderma be cured completely?
A complete cure cannot be promised. Treatment aims to prevent organ damage, reduce pain and preserve mobility, which is why early diagnosis and a prompt start matter. Its course depends on the form and the organs involved, so activity is checked regularly and treatment adjusted when things change.
Which documents should I bring to a scleroderma consultation?
Bring everything you have: discharge summaries, lung CT images on a disc rather than reports alone, antibody results, lung function data and echocardiogram reports. The discharge summary is translated in advance. Outdated studies, or those done with a different technique, are repeated on site as routine.
How AlenMed arranges the treatment
AlenMed sends the discharge summary, laboratory results and images to a rheumatology department experienced in systemic sclerosis specifically. The company works with 86 partner hospitals in 38 German cities and 345 doctors, and its office is in Munich. The paperwork covers a translated discharge summary, the hospital’s written reply, the invitation letter and the medical visa, and an interpreter attends the appointment.
Ask in advance who will monitor the patient after the return home, which studies to repeat and how often, what to do in a flare and which documents to take home.
This material is for information only and is not an offer; the treatment plan is decided by a doctor in person.