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Table of Contents
Lifestyle
OTC Treatments
Prescriptions
Surgeries
Alternative Treatments
Frequently Asked Questions
Next in Paroxysmal Nocturnal Hemoglobinuria Guide
Even thoughparoxysmal nocturnal hemoglobinuria(PNH) is rare, there are effective treatments—some of which can potentially cure the condition. However, the treatments have risks that people with the condition need to know about.
This article will review the current treatments for PNH, as well as possible options for future therapies.
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What Is Paroxysmal Nocturnal Hemoglobinuria?
Home Remedies and Lifestyle
There are no home remedies or lifestyle changes that are recommended to treat PNH. That said, there are some steps that you can take tomanage the conditionand the symptoms you have, such as:
If you have PNH, you may have fewer red blood cells, white blood cells, and platelets than normal, which can put you at risk for health consequences. You will need to take steps to protect yourself from infections and blood clots.
If you are taking blood thinners as a part of your treatment for PNH, you will need to take steps to prevent excessive bleeding.
Over-the-Counter (OTC) Therapies
There are no over-the-counter (OTC) remedies or medications that are approved to treat PNH. If you have PNH, you’ll need to discuss your treatment options with your doctor, as well as the steps that you can take in your daily life to manage the condition and any symptoms that you experience.
The Most Popular OTC Medications in the U.S.
While all four medications are effective in interrupting the process that leads to PNH, there are risks involved with the treatments. The medications can increase your risk of certain infections, including meningococcal disease and infections with theNeisseriagenus of bacteria that target your respiratory system.
Due to the risk of these medications, they are only available through a restricted distribution system under a Risk Evaluation and Mitigation Strategy (REMS).
Your doctor will determine the best treatment option for you and make sure that you understand how to reduce your risk of infection, including taking prophylactic antibiotics and adhering to a strictvaccination schedule.
Which Vaccines Do Adults Need?
Based on your symptoms or any complications of PNH that you develop, your doctor might also want you to take other medications, including:
Surgeries and Specialist-Driven Procedures
The only curative treatment for PNH isbone marrow transplantation. Some people with PNH can be treated with an allogeneic bone marrow transplant.
For this type of transplant, your own marrow is destroyed using chemotherapy, radiation, or both. Healthybone marrowis obtained from a donor and transplanted into you through an IV. As thenew stem cellsmigrate to bone marrow, they will start to produce new blood cells that do not have the genetic mutation that causes PNH.
A bone marrow transplant is a risky procedure. It carries a high risk of rejection of the donated cells and can lead to death. Therefore, the treatment is usually reserved for people with severe bone marrow failure, repeated blot clots, or other fatal complications of PNH.
The best-case scenario is to identify an identical twin or a sibling with the same bone marrow type as a person with PNH. However, for many people with the condition, an unrelated matching donor must be found.
Complementary and Alternative Medicine (CAM)
Complementary and alternative medicine (CAM) therapies are not used to treat PNH. Even though CAM therapies are not therapeutic or curative if you have PNH, taking steps to improve your overall health can still be beneficial. One aspect of managing the condition is avoiding triggers.
Potential triggers forPNH symptomsthat you should avoid include:
What Is Homeopathic Medicine?
Summary
Paroxysmal nocturnal hemoglobinuria (PNH) is a chronic condition that affects the blood cells in your body. It requires treatment to prevent complications, including death.
There are medications that can help treat the symptoms of the condition, but they come with risks and do not cure PNH. A special type of bone marrow transplantation can be curative, but it is very risky and may not be possible or advisable for every patient with PNH.
A Word From Verywell
If you arediagnosed with PNH, your doctor will talk to you about your options for treatment. There are no OTC or alternative treatments that are approved for PNH, but there are two prescription medications. However, each comes with serious risks.
The only potential cure for PNH is a special type of bone marrow transplant, but it carries significant risks as well. Therefore, it’s only used for people with very severe cases of PNH.
Frequently Asked QuestionsThere are no complementary or alternative treatments that can cure or treat PNH, but your doctor may suggest taking an iron supplement if you are anemic.Learn MoreAn Overview of Dietary SupplementsBone marrow transplantation can cure PNH because it replaces your stem cells that carry the mutation causing PNH with stem cells from someone who does not have the mutation. However, the procedure is risky and is generally only used in select, serious cases.There are no lifestyle changes that can directly cure, prevent, or treat PNH, but there are steps that you can take to prevent flare-ups of the condition, such as avoiding triggers and taking care of your overall health.
There are no complementary or alternative treatments that can cure or treat PNH, but your doctor may suggest taking an iron supplement if you are anemic.Learn MoreAn Overview of Dietary Supplements
There are no complementary or alternative treatments that can cure or treat PNH, but your doctor may suggest taking an iron supplement if you are anemic.
Learn MoreAn Overview of Dietary Supplements
Bone marrow transplantation can cure PNH because it replaces your stem cells that carry the mutation causing PNH with stem cells from someone who does not have the mutation. However, the procedure is risky and is generally only used in select, serious cases.
There are no lifestyle changes that can directly cure, prevent, or treat PNH, but there are steps that you can take to prevent flare-ups of the condition, such as avoiding triggers and taking care of your overall health.
How Your Lifestyle Affects Your Health
7 SourcesVerywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Brodsky RA.How I treat paroxysmal nocturnal hemoglobinuria.Blood. March 2021;137(10):1304-1309. doi:10.1182/blood.2019003812National Institutes of Health.Eculizumab injection. Updated October 25, 2021.National Institutes of Health.Ravulizumab-cwvz injection.Updated October 25, 2021.Food and Drug Administration.FDA approves new treatment for adults with serious rare blood disease.Food and Drug Administration.Fabhalta label.National Organization for Rare Disorders.Paroxysmal nocturnal hemoglobinuria. Updated 2019.Johns Hopkins Medicine.Paroxysmal nocturnal hemoglobinuria (PNH).
7 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Brodsky RA.How I treat paroxysmal nocturnal hemoglobinuria.Blood. March 2021;137(10):1304-1309. doi:10.1182/blood.2019003812National Institutes of Health.Eculizumab injection. Updated October 25, 2021.National Institutes of Health.Ravulizumab-cwvz injection.Updated October 25, 2021.Food and Drug Administration.FDA approves new treatment for adults with serious rare blood disease.Food and Drug Administration.Fabhalta label.National Organization for Rare Disorders.Paroxysmal nocturnal hemoglobinuria. Updated 2019.Johns Hopkins Medicine.Paroxysmal nocturnal hemoglobinuria (PNH).
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
Brodsky RA.How I treat paroxysmal nocturnal hemoglobinuria.Blood. March 2021;137(10):1304-1309. doi:10.1182/blood.2019003812National Institutes of Health.Eculizumab injection. Updated October 25, 2021.National Institutes of Health.Ravulizumab-cwvz injection.Updated October 25, 2021.Food and Drug Administration.FDA approves new treatment for adults with serious rare blood disease.Food and Drug Administration.Fabhalta label.National Organization for Rare Disorders.Paroxysmal nocturnal hemoglobinuria. Updated 2019.Johns Hopkins Medicine.Paroxysmal nocturnal hemoglobinuria (PNH).
Brodsky RA.How I treat paroxysmal nocturnal hemoglobinuria.Blood. March 2021;137(10):1304-1309. doi:10.1182/blood.2019003812
National Institutes of Health.Eculizumab injection. Updated October 25, 2021.
National Institutes of Health.Ravulizumab-cwvz injection.Updated October 25, 2021.
Food and Drug Administration.FDA approves new treatment for adults with serious rare blood disease.
Food and Drug Administration.Fabhalta label.
National Organization for Rare Disorders.Paroxysmal nocturnal hemoglobinuria. Updated 2019.
Johns Hopkins Medicine.Paroxysmal nocturnal hemoglobinuria (PNH).
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