Overview
Pneumocystosis, also called Pneumocystis pneumonia (PCP), is a serious lung infection caused by a fungus called Pneumocystis jirovecii (previously known as Pneumocystis carinii). This fungus is found almost everywhere in the environment and does not usually cause illness in healthy people. However, in people whose immune system is weakened — such as those living with HIV/AIDS, people receiving chemotherapy, or organ transplant recipients on immune-suppressing medications — the fungus can multiply in the lungs and cause a dangerous infection. The infection mainly affects the lungs, causing inflammation and making it hard to breathe. The air sacs in the lungs fill with fluid and fungal organisms, which reduces the amount of oxygen the body can absorb. Without treatment, the infection can become life-threatening very quickly. The most common symptoms include a dry cough, shortness of breath (especially with activity), fever, and tiredness. Some people also experience chest tightness or discomfort. Symptoms often come on gradually over days to weeks. The good news is that pneumocystosis can be treated effectively with antibiotics, especially a drug called trimethoprim-sulfamethoxazole (TMP-SMX), also known as co-trimoxazole. People at high risk can also take preventive medication to stop the infection from happening in the first place. Early diagnosis and treatment greatly improve outcomes.
Key symptoms:
Dry, non-productive coughShortness of breath, especially during physical activityFever and chillsFatigue and low energyChest tightness or discomfortRapid breathingLow blood oxygen levelsNight sweatsUnintended weight lossDifficulty completing everyday tasks due to breathlessness
Clinical phenotype terms (23)— hover any for plain English
Sporadic
Usually appears on its own, not inherited from a parent
Variable
Can begin at different ages, from infancy through adulthood
FDA & Trial Timeline
10 eventsMcGill University Health Centre/Research Institute of the McGill University Health Centre — PHASE4
McGill University Health Centre/Research Institute of the McGill University Health Centre — PHASE4
Todd C. Lee MD MPH FIDSA — PHASE3
Qingyuan Zhan — PHASE3
Nottingham University Hospitals NHS Trust
University Hospital, Tours — PHASE1, PHASE2
Assistance Publique - Hôpitaux de Paris
MSPU de Pins-Justaret
Hidde van der Ploeg — NA
Tongji Hospital — PHASE4
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Pneumocystosis.
7 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →Rare Disease Specialist
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Pneumocystosis.
Community
No community posts yet. Be the first to share your experience with Pneumocystosis.
Start the conversation →Latest news about Pneumocystosis
Disease timeline:
New recruiting trial: Low Dose Trimethoprim-Sulfamethoxazole for the Treatment of Pneumocystis Jirovecii Pneumonia
A new clinical trial is recruiting patients for Pneumocystosis
New recruiting trial: Treating Early Type 2 Diabetes by Reducing Postprandial Glucose Excursions: A Paradigm Shift in Lifestyle Modification
A new clinical trial is recruiting patients for Pneumocystosis
New recruiting trial: Introduction of Polymerase Chain Reaction (PCR) in Microbiology and Parasitology
A new clinical trial is recruiting patients for Pneumocystosis
New recruiting trial: Caspofungin for Pneumocystis Pneumonia in PLWHIV.
A new clinical trial is recruiting patients for Pneumocystosis
New recruiting trial: Rezafungin for Treatment of Pneumocystis Pneumonia in HIV Adults
A new clinical trial is recruiting patients for Pneumocystosis
New recruiting trial: Efficacy and Safety of Prophylactic Treatment for Pneumocystis Jirovecii Pneumonia in Patients With Autoimmune Inflammatory Rheumatic Disease
A new clinical trial is recruiting patients for Pneumocystosis
New recruiting trial: Implementation of the Personalized Care Plan (PCP) Proposed at the End of Step 2 of the ICOPE Program
A new clinical trial is recruiting patients for Pneumocystosis
New recruiting trial: Sulfamethoxazole Prophylaxis Duration After Renal Transplantation
A new clinical trial is recruiting patients for Pneumocystosis
Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.What is the best treatment option for me given my other health conditions and medications?,How long will I need to take antibiotics, and what side effects should I watch for?,Should I be on preventive antibiotics after I recover, and for how long?,What is causing my immune system to be weakened, and how can we address that?,How will we know if the treatment is working, and when should I expect to feel better?,Am I at risk of getting this infection again, and what can I do to prevent it?,Are there any activities or exposures I should avoid while I recover or afterward?
Common questions about Pneumocystosis
What is Pneumocystosis?
Pneumocystosis, also called Pneumocystis pneumonia (PCP), is a serious lung infection caused by a fungus called Pneumocystis jirovecii (previously known as Pneumocystis carinii). This fungus is found almost everywhere in the environment and does not usually cause illness in healthy people. However, in people whose immune system is weakened — such as those living with HIV/AIDS, people receiving chemotherapy, or organ transplant recipients on immune-suppressing medications — the fungus can multiply in the lungs and cause a dangerous infection. The infection mainly affects the lungs, causing inf
How is Pneumocystosis inherited?
Pneumocystosis follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
Are there clinical trials for Pneumocystosis?
Yes — 7 recruiting clinical trials are currently listed for Pneumocystosis on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Pneumocystosis?
25 specialists and care centers treating Pneumocystosis are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.