Paroxysmal nocturnal hemoglobinuria (PNH) can cause headaches, a racing heart, chest pain, and fatigue. In more severe cases, it can cause trouble swallowing, stomach contractions, and spasms in your throat.
Treatments for PNH are aimed at reducing your symptoms. You might need to take multiple medications and have ongoing doctor’s appointments as part of your treatment. Managing your symptoms and treatments could leave you feeling overwhelmed.
Try these tips to stay motivated when PNH treatment becomes difficult.
Get educated. Learning that you have PNH can be scary. It’s important to learn about the disease and understand the causes, symptoms, and treatment options — but don’t put too much pressure on yourself to learn everything right away.
As you find out new information, including details about other available PNH treatments or clinical trials, make notes and write down questions to ask your doctor at your next appointment.
Take charge. PNH medications can cause side effects ranging from stomach pain, diarrhea, and nausea to headaches and skin reactions where the needle went in. Having a plan to manage side effects can help make treatment easier. Your plan might include:
- Eating several smaller meals to prevent an upset stomach
- Preparing meals that are high in protein and calories
- Applying ice to your injection site to ease pain
- Taking over-the-counter pain relievers for injection site pain
- Staying hydrated to ease headaches
- Using over-the-counter pain meds for injection site reactions
- Drinking lots of water or beverages with electrolytes for diarrhea
- Avoiding spicy and fatty foods, dairy products, and caffeinated drinks that could make your upset stomach worse
Rest. Fatigue is one of the most common symptoms of PNH. It drains your mental and physical energy and leaves you feeling sluggish. Rest gives your body a chance to recharge and can improve your energy levels and your mood so that you can continue managing your disease.
Aim to get 7-8 hours of sleep per night. You can increase the odds of getting a restful night of sleep by going to bed and waking up around the same time each day. It can also help to avoid alcohol, caffeine, and screen time before bed.
Practice self-care. Managing a chronic condition like PNH can be stressful. It’s important to have a self-care plan. Some studies show that practicing self-care boosts the likelihood that you’ll stick to your treatment plan.
Make time for the things that you enjoy most, whether it’s meditating, listening to music, spending time in nature, or journaling.
Talk it out. Mental health support can help you manage a chronic disease like PNH. A specific type of therapy known as cognitive behavioral therapy (CBT) helps address the connection between your thoughts, emotions, and behaviors.
CBT has been shown to help those with chronic illnesses manage their symptoms and stick to their medication regimens.
Seek support. Support groups can also ease some of the stress that comes with having PNH. Ask your health care provider for recommendations. You can also look up support groups through organizations like the Aplastic Anemia and MDS International Foundation.
Support groups offer a place to share experiences and feelings, discuss coping strategies, and receive emotional support. It can make you feel less lonely to know that others are experiencing similar symptoms and searching for the right PNH treatment. These groups can provide you with a sense of hope for managing your illness.
Support groups can also be a great place to learn about new treatment options, health care providers who have experience treating the rare disease, and resources to help cover the cost of care. The mutual support you find in these peer groups can be key for coping with PNH.
Consult your doctor. There are a number of different options for treating PNH. If your symptoms change, you notice that your current treatment plan is no longer working, or the side effects are hard to manage, ask if there are other options. Ongoing communication with your health care team is an important part of managing PNH.
On the days you feel overwhelmed with managing PNH, having some strategies in place to stay motivated can ensure that you stick with your treatment plan.
Show Sources
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SOURCES:
National Organization for Rare Disorders: “Paroxysmal Nocturnal Hemoglobinuria.”
The Aplastic Anemia and MDS International Foundation: “Learn About Your Disease,” “PNH Toolkit,” “Support Groups.”
National Gaucher Foundation: “Sleep & The Immune System: Why Sleep Is Important for Your Health.”
Stony Brook Medicine: “Sleep and Rest.”
Michigan State University: “Self-care tools for chronic health conditions.”
Journal of Public Health Research: “Effectiveness of self-management on adherence to self-care and on health status among elderly people with hypertension.”
American Association of Doctors of Behavioral Health: “How to Use Cognitive Behavioral Therapy in Chronic Disease Management.”
Mayo Clinic: “Stress Management.”
