Henoch-Schonlein purpura

What causes Henoch-Schonlein purpura?

The cause of Henoch-Schonlein purpura (HSP) is not completely understood, but research indicates that genes play a key role in predisposing a person to developing HSP, as well as the severity of HSP in each person. The disease has been most strongly associated with having certain variations of genes in the human leukocyte antigen (HLA) gene family, a cluster of genes that the immune system uses to tell the difference between the body's own substances and foreign invaders. Environmental factors such as recent bacterial or viral infections, food allergies, and medication reactions also may play a role in the onset of HSP in people who are genetically predisposed.

Last updated on 05-01-20

Are there any research studies for individuals with Henoch-Schonlein purpura?

The U.S. National Institutes of Health, through the National Library of Medicine, developed ClinicalTrials.gov to provide patients, family members, and members of the public with current information on clinical research studies. Currently, 4 clinical trials are identified as enrolling individuals with Henoch-Schonlein purpura. To find these trials, click on the link above and use "Henoch-Schonlein purpura" as your search term. After you click on a study, review its "eligibility" criteria to determine its appropriateness. Use the study’s contact information to learn more. Check this site often for regular updates.

You can also contact the Patient Recruitment and Public Liaison (PRPL) Office at the National Institutes of Health (NIH). We recommend calling 1-800-411-1222 to speak with a specialist, who can help you determine if you are eligible for any clinical trials.

Patient Recruitment and Public Liaison Office
NIH Clinical Center
Bethesda, Maryland 20892-2655
Toll-free: 1-800-411-1222
Fax: 301-480-9793
E-mail: prpl@mail.cc.nih.gov

Web site: http://clinicalcenter.nih.gov/

If you are interested in enrolling in a clinical trial, you can find helpful general information on clinical trials at the ClinicalTrials.gov Web page. Resources on many charitable or special-fare flights to research and treatment sites and low- cost hospitality accommodations for outpatients and family members, as well as ambulance services, are listed on the Web site of the Office of Rare Diseases Research (ORDR), part of the National Institutes of Health.

Last updated on 05-01-20

If Henoch-Schonlein purpura more common in children, why do I still have symptoms of this disease as an adult?

Henoch-Schonlein purpura (HSP) does affect children more frequently than adults. In most affected individuals, the condition goes away on its own. However, HSP develops into a chronic condition in up to 5% of individuals, which means they continue to have symptoms into adulthood.

Last updated on 05-01-20

How might Henoch-Schonlein purpura be treated?

The vast majority of people with Henoch-Schonlein purpura (HSP) recover on their own within several weeks. Supportive care until recovery when there is little or no kidney involvement may include adequate hydration, rest, and over-the-counter pain medication as needed for joint and abdominal pain due to inflammation. Swelling of the lower body may improve with bed rest or elevating the affected area of the body. If symptoms of inflammation are severe, prescription pain or anti-inflammatory medication may be needed. Non-steroidal anti-inflammatory drugs (NSAIDs) should not be used in people with impaired kidney function or kidney disease. Rarely, severe gastrointestinal complications require surgery.

The use of glucocorticoids (steroids) in people with HSP has been under debate. While glucocorticoids have been reported to improve symptoms (particularly gastrointestinal symptoms), it is questionable whether they improve the course of the disease, and they may have potentially dangerous side effects (such as masking signs of fever and pain). They generally are not recommended as a means of preventing kidney or gastrointestinal complications.

Hospitalization may be needed for those with dehydration, debilitating abdominal or joint pain (limiting the ability to move around), significant gastrointestinal bleeding, or kidney disease. People with significant kidney involvement or advanced kidney disease may require immunosuppressive medications, hemodialysis, or kidney transplantation. While immunosuppressive therapies such as rituximab have shown promising results in initial studies, more studies are needed to determine their safety and effectiveness in people with HSP who have severe kidney involvement and other severe symptoms.

Last updated on 05-01-20

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