About Paroxysmal Nocturnal Hemoglobinuria
Key Highlights
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Accurate diagnosis through highly sensitive flow cytometry testing.Life-changing treatment with targeted complement inhibitor therapies that dramatically reduce hemolysis and thrombosis risk.Comprehensive, lifelong management plan tailored by a hematology specialist.Significant improvement in quality of life, fatigue levels, and long-term survival.Reduces or eliminates the need for frequent blood transfusions in many patients.
Who is this surgery for?
- Unexplained episodes of dark or red urine, especially in the morning (nocturnal hemoglobinuria).
- Persistent, severe fatigue and shortness of breath due to anemia from hemolysis.
- Recurring or unexplained blood clots (thrombosis) in unusual locations.
- Evidence of hemolytic anemia with low red blood cell counts on lab tests.
- Abnormalities in other blood cell lines (low platelets or white cells) suggesting bone marrow involvement.
- As a follow-up to a positive screening test (e.g., Ham test or sucrose hemolysis test).
How to prepare
- Detailed consultation with a hematologist to review medical history and symptoms.
- Completion of initial blood tests, including a complete blood count (CBC), LDH, and haptoglobin.
- Specific preparation for the diagnostic flow cytometry test: no special fasting usually required.
- Discussion of all current medications and supplements with the doctor.
- For starting complement inhibitor therapy, pre-treatment vaccinations against meningococcal bacteria are mandatory due to increased infection risk.
- Psychological preparation for a chronic condition requiring long-term monitoring and treatment.
Risks & possible complications
- Life-threatening blood clots (thrombosis) in veins or arteries.
- Severe anemia requiring frequent blood transfusions.
- Chronic kidney disease or acute kidney injury due to hemolysis.
- Increased risk of infections, particularly a serious meningococcal infection with complement inhibitor therapy.
- Bone marrow failure or progression to other disorders like aplastic anemia or myelodysplastic syndrome.
- Pulmonary hypertension and abdominal pain crises.
- Potential side effects from medications, including headaches, nausea, or infusion reactions.
Recovery & hospital stay
- Recovery is a long-term process focused on disease management, not a single procedure.
- Regular follow-up visits with the hematologist (every 3-6 months) for blood monitoring.
- Lifelong adherence to prescribed complement inhibitor infusions (every 2-8 weeks).
- Carrying a patient safety card and remaining vigilant for signs of infection, especially meningitis.
- Managing fatigue through paced activity, a balanced diet, and staying hydrated.
- Immediate reporting of new symptoms like severe headache, fever, or pain/swelling in limbs (possible clot).
- Psychological support or counseling to cope with a chronic illness.
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Typical hospital stay: 0-2 days
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Expected recovery time: Ongoing management
Frequently Asked Questions
If you are considering paroxysmal nocturnal hemoglobinuria in India, these questions and answers can help you make a confident, informed decision.
Popular choices for paroxysmal nocturnal hemoglobinuria in India include Manipal Hospital Ranchi, known for experienced specialists and advanced surgical infrastructure.
Look at the doctor’s years of experience, hospital association, patient reviews, and how often they perform paroxysmal nocturnal hemoglobinuria. MediFyr helps you compare hematologists and book consultations online.
The overall cost depends on hospital category, surgeon’s experience, room type, implant or device used (if any), length of stay, tests, and post-operative care. Our team can help you get cost estimates from multiple hospitals before you decide.
Procedure cost in other countries
Here is an overview of how the estimated cost, hospital stay, and recovery time for paroxysmal nocturnal hemoglobinuria compare across other countries where we have data.
Top hospitals for Paroxysmal Nocturnal Hemoglobinuria in India
These partner hospitals in India have dedicated hematology teams and experience managing patients undergoing paroxysmal nocturnal hemoglobinuria.
Rohan Bhatia, a 28-year-old software engineer...
Rohan Bhatia, a 28-year-old software engineer from Bangalore, had always been active but started experiencing crushing fatigue. Over six months, he noticed dark, cola-colored urine most mornings, severe abdominal pain, and frequent headaches. Blood tests revealed severe anemia and low platelets. His local doctor, suspecting something serious, referred him to a hematologist. The hematologist, Dr. Kapoor, explained that Rohan's symptoms pointed to Paroxysmal Nocturnal Hemoglobinuria (PNH), a rare blood disorder where the immune system attacks red blood cells. She recommended starting treatment with a targeted therapy called a C5 inhibitor (eculizumab) to control the destruction. The treatment began with weekly infusions, which were time-consuming and made Rohan anxious about missing work. However, within two months, his morning hemoglobinuria vanished, his energy returned, and his abdominal pain subsided. Post-treatment, his blood counts stabilized, and he only requires bi-weekly maintenance infusions. Emotionally, Rohan went from terrified and confused by the strange symptoms to feeling empowered and hopeful. He now manages his condition well and has returned to his career and passion for hiking, with regular monitoring giving him peace of mind.
Hematologists for Paroxysmal Nocturnal Hemoglobinuria
Explore experienced hematologists who regularly perform paroxysmal nocturnal hemoglobinuria and provide pre- and post-operative care in India.
- 11 Years Experience
- Hematologist
Manipal Hospital Sarjapur Road, Bangalore
- 14 Years Experience
- Hematologist
Manipal Hospital Old Airport Road, Bangalore
- 13 Years Experience
- Hematologist
Manipal Hospital Mysore, Mysore
- 10 Years Experience
- Hematologist
Manipal Hospital Kharadi, Pune
- 18 Years Experience
- Hematologist
Manipal Hospital Hebbal, Bangalore
- 21 Years Experience
- Hematologist
- 14 Years Experience
- Hematologist
- 27 Years Experience
- Hematologist
Manipal Hospital Millers Road, Bangalore
- 16 Years Experience
- Hematologist
KMC Hospital Mangalore, Mangalore
- 24 Years Experience
- Hematologist
Manipal Hospital Mukundapur, Kolkata
- 10 Years Experience
- Hematologist
Manipal Hospital Dhakuria, Kolkata
- 13 Years Experience
- Hematologist
Manipal Hospital Dhakuria, Kolkata
- 8 Years Experience
- Hematologist
Manipal Hospital Varthur Road, Bangalore
- 13 Years Experience
- Hematologist
Manipal Hospitals Broadway, Kolkata