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Lymphangioleiomyomatosis (LAM) treatment

Therapies at a glance

  • Immunosuppressants: The active substance Sirolimus or Everolimus from the group of immunosuppressants is used, which slow down the activity of the immune system and in particular the proliferation of LAM cells. Sirolimus stabilizes lung function, alleviates breathing problems and ensures a better quality of life. However, when treatment is discontinued, the LAM progresses again. Sometimes we use bronchodilator medication (bronchodilators). They dilate the bronchial tubes and relieve shortness of breath.
  • Oxygen therapy: In advanced LAM, oxygen therapy helps to compensate for the lack of oxygen. Those affected become physically fitter and more efficient again. Sometimes long-term treatment with oxygen is also necessary.
  • Lung transplantation: This is an option if the lymphangioleiomyomatosis is very advanced. However, donor organs are in short supply in many countries, including Switzerland. As a result, many patients wait a long time for a new organ. Lung transplantation requires a good general condition and is more suitable for younger women. After a transplant, the prognosis is good – so far, specialists have not observed any relapses in which the tissue growths or tumors have returned.

You can also do something yourself to alleviate your symptoms and positively influence the course of lymphangioleiomyomatosis. Some tips:

  • Take part in breathing training with a physiotherapist. You will learn special breathing techniques to help you inhale and exhale with greater concentration, breathe better and relax more easily.
  • Don’t smoke, because the smoke puts even more strain on your lungs. If you are a smoker, try to stop smoking. Often it doesn’t work the first time. Don’t let this discourage you, but try again. You can also seek professional support.
  • Make sure you are sufficiently vaccinated. Get vaccinated against flu (influenza) and pneumococci. This protects your lungs better against dangerous viruses and bacteria.
  • Make sure you maintain a healthy body weight.
  • Exercise.
  • Inhalers help with constricted airways and relieve shortness of breath.
  • Avoid hormonal contraceptives that contain oestrogens. The LAM may deteriorate. For the same reason, it is better not to use hormone replacement therapy during and after the menopause.
  • You should always discuss pregnancy in detail with us, as the increased oestrogen level can exacerbate lymphangioleiomyomatosis.

Self-help and further information on lymphangioleiomyomatosis

For some people, sharing experiences and meeting other affected people helps. In this way, they learn that they are not alone with their illness, needs and fears. The following self-help groups offer advice and support for lymphangioleiomyomatosis and tuberous sclerosis:

Interview with lung specialist and senior physician Dr. Christian Clarenbach:

Have LAM checked regularly

Women with LAM should have regular check-ups with us. They monitor lung function and check how the disease is developing.

Responsible senior physician

Portrait Christian Clarenbach

Christian Clarenbach, Prof. Dr. med.

Senior Physician, Department of Pulmonology

Tel. +41 44 255 38 28
Specialties: Head of Interstitial and Rare Lung Diseases

For patients

As a patient, you cannot register directly for a consultation. Please get a referral from your primary care physician, specialist. For questions please use our contact form.

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Assign your patient online, by e-mail or by post.

University Hospital Zurich
Department of Pulmonology
To the attention of (insert desired doctor here)
Raemistrasse 100
8091 Zurich

Tel. +41 44 255 22 21
Mail pneumologie@usz.ch
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Responsible Department

Department of Pulmonology

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