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Alternative treatments (also known as complementary and alternative medicine, or CAM) aren’t considered part of standard medical care. These may include acupuncture, herbal supplements, and mindfulness techniques. Many people use CAM therapies alongside conventional treatments to help manage their symptoms and improve their overall well-being.
If symptoms of paroxysmal nocturnal hemoglobinuria (PNH) are decreasing your quality of life, you may wonder if alternative treatments can help your symptoms. Although alternative treatments don’t treat the underlying cause of PNH, they may help with some symptoms, such as fatigue (extreme tiredness). However, not all types of alternative treatments are safe for everyone.
CAM is any treatment or medicine that isn’t considered standard medical care — the treatment that medical experts and health care providers accept as proper treatment for a certain disease. Standard medical treatment usually includes conventional medicine such as surgery, radiation, or drugs.
Here are examples of standard medical treatment for PNH:
Complementary medicine is a nonstandard treatment that’s used alongside conventional medicine. Alternative medicine is a nonstandard treatment that’s used instead of conventional medicine.
People with PNH may turn to CAM to improve ongoing problems associated with the disease, such as fatigue and stress.
Up to 80 percent of people with PNH experience fatigue. Fatigue in PNH can be severe enough to decrease your quality of life, make it difficult to take care of yourself, and keep you from doing activities you enjoy. You may still feel fatigued even if you’re receiving appropriate treatment for your disease. Some types of CAM may help you combat fatigue so that you can get back to activities you enjoy.
Additionally, some treatment options, such as eculizumab, can be stressful due to the need for ongoing trips to the doctor’s office for infusions. The time and stress involved in receiving these treatments can interfere with the time you could spend with your family and loved ones.
Although treating PNH is important for your health, the treatments might not take care of all your symptoms. You might need to look for other ways to feel better. Keep reading to learn more about six alternative treatments for PNH.
A nutritional-based approach is a type of CAM that involves vitamins, dietary supplements, plants, and special diets. These methods help improve overall health and manage specific health issues by giving your body the nutrients it needs and encouraging healthy eating habits.
Although dietary supplements are often considered CAM, some types of vitamins and supplements may be used as standard treatment for some people with PNH. If you have anemia (low levels of healthy red blood cells, or RBCs), your doctor may recommend supplements to help your body produce more, including:
Correcting any iron or vitamin deficiencies may help improve symptoms of anemia, such as fatigue.
Folate, iron, and vitamin B12 are safe and effective if you take the dose your health care provider recommends. A 2020 study in China found that iron supplements are a safe and effective treatment for increasing hemoglobin (the main component of RBCs) in people with PNH and iron deficiency.
There aren’t any studies on the effect of other supplements on fatigue in people with PNH. However, studies have been done on people with fatigue from other conditions, such as cancer. A 2024 review of several studies found that melatonin, PG2 (an injection of a plant extract), and S-adenosyl-l-methionine (SAM-e) may help improve cancer-related fatigue. However, the safety and efficacy of these supplements for people with PNH haven’t been studied. Talk to your health care provider before you start taking any new vitamin or supplement to make sure it’s safe.
There isn’t any one diet that’s been shown to improve PNH symptoms. In some cases, a special diet can be beneficial for people with PHN. Although your diet can be a helpful tool in improving PNH symptoms, it’s important to know that diet alone can’t control PNH.
A diet rich in fruits and vegetables and lower in meat may help prevent thrombosis (life-threatening blood clots) related to PNH. An example of a diet high in fruits and vegetables is the Mediterranean diet. This type of diet is generally safe for most people, but talk to your health care provider to help you find a healthy diet that’s best for you.
A low-sodium diet may help people with PNH who develop pulmonary hypertension (PH). About half of people with PNH have PH — a condition that affects the blood vessels in the lungs, causing shortness of breath and chest pain. People with PH may have swelling caused by a build-up of fluid. Controlling the amount of salt you eat in your diet may help you control swelling caused by PH.
A low-sodium diet is also part of a heart-healthy diet, making it safe for most people. Talk to your health care provider about how much sodium you should get in your diet.
Meditation and mindfulness are practices that focus on calming your mind and improving your well-being. Meditation practices are a way of clearing your mind by using different physical or mental techniques, such as focusing on a sensation, breathing, or a mantra. Mindfulness is a type of meditation that involves focusing only on the present moment without judgment.
Several clinical trials have found that meditation and mindfulness practices may help treat stress and anxiety, improve sleep, and improve the quality of life for people with cancer, for example.
There aren’t many risks associated with meditation and mindfulness practices. However, there aren’t many clinical trials examining the potentially negative effects of these practices.
Mind-body therapies help you relax your mind and body. This type of therapy is usually led by a person with special training. Examples of mind-body therapies include:
Activities like yoga and tai chi are generally considered safe and may help reduce stress, help you sleep, and improve your quality of life. When mind-body therapies are taught by a qualified practitioner, there is little risk to your safety.
When you’re feeling fatigued, exercise is probably the last thing you want to do. However, several clinical trials have found that physical activity can help improve fatigue due to chronic (long-term) conditions.
Talk to your health care provider to find out what level of physical activity is safe for you.
Traditional Chinese medicine is a whole medical system that uses psychological practices, physical approaches, and herbal products to treat different health conditions. Many different Chinese herbs have been used to combat fatigue. Although there is some evidence that traditional Chinese herbs may help people with some types of fatigue, researchers don’t know enough about the safety of these supplements.
Acupuncture — a technique where the body is stimulated using needles in your skin — is another component of traditional Chinese medicine. Some evidence shows that it may help improve long-term fatigue. Although adverse events related to acupuncture are rare, infections have occurred from needles that aren’t properly sterilized.
Ayurvedic medicine (also called Ayurveda) is an Indian medical system that uses a whole-person approach to balance the mind, body, and spirit.
Ayurveda uses a combination of products and techniques, including:
Researchers don’t know much about the safety or efficacy of Ayurvedic herbs or diets. However, practices like massage, yoga, and meditation are safe for most people and may help you cope with the symptoms of PNH.
Just because a treatment is natural, it doesn’t mean it’s safe. Many herbs and supplements can be harmful by themselves or interact with your other treatments. Additionally, some alternative treatments have been found to have dangerous contaminants, such as lead or arsenic. It is important to note that CAM treatments are not a cure for PNH, they may only reduce some of your symptoms and improve your quality of life.
Always talk to your health care provider about all CAM treatments you’re using, even if you think they’re safe, such as massage or meditation. This helps ensure that these treatments won’t interfere with your regular medical care. Your doctor can also give you advice on how to use CAM therapies safely and effectively.
On myPNHteam, the social network for people with paroxysmal nocturnal hemoglobinuria and their loved ones, members come together to ask questions, give advice, and share their stories with others who understand life with PNH.
Have you used any alternative treatments for PNH? How have you incorporated them into your life? Share your experience in the comments below, or start a conversation by posting on your Activities page.
Fatima Sharif, MBBS, FCPS
graduated from Aga Khan University, Pakistan, in 2017 after completing medical school.
Learn more about her here.
Amanda Jacot, Pharm.D
earned a Bachelor of Science in biology from the University of Texas at Austin in 2009 and a Doctor of Pharmacy from the University of Texas College of Pharmacy in 2014.
Learn more about her here.
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