View a list of NIH investigators and their contact information.
Volunteer for NIAID-funded clinical studies related to ALPS on ClinicalTrials.gov.
There is no cure for ALPS. However, most of its complications can be treated.
An enlarged spleen is common in patients with ALPS. Usually, it is not necessary to remove the spleen unless there are severe problems like anemia and thrombocytopenia that are not responsive to treatment or if there is concern that the spleen may rupture due to massive enlargement. Removing a spleen carries both risks and benefits, which doctors and patients must carefully consider before deciding what to do.
Steroids are the first line of treatment for anemia and thrombocytopenia caused by autoimmune processes. One common steroid is prednisone. It is often given for a short time, but sometimes it is needed for longer periods.
When prednisone is not enough to treat these episodes, other drugs such as mycophenolate mofetil, rituximab, IVIG, and vincristine may also be prescribed. Steroids have been very effective in treating these problems. However, steroids can have adverse side effects, so they should not be used for extended periods of time.
Blood transfusions are useful to replace red blood cells when anemia is severe. Vaccines are important to help prevent infections. In addition to all childhood vaccinations, it is important to get a yearly flu shot and boosters as needed. People with allergies to eggs should discuss the risks with their doctor prior to receiving a flu shot.
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Last Updated October 06, 2008