What treatment options are available?
Medical management
Your doctor may prescribe medications to help reduce your symptoms. These may include complement inhibitor therapy, adjunctive treatment, corticosteroids and anticoagulants. The main types of complement inhibitors available in Canada are described below.
C3i: Complement C3 inhibitor; C5i: Complement C5 inhibitor.
Supportive Treatment
Supplements may be part of your treatment plan to help control or reduce symptoms of PNH.
These items may include
Before taking any supplements, talk to your doctor to determine whether it is suitable for your treatment plan.
Blood transfusion is a common procedure that helps replace blood or blood components in your body that may be too low. Blood is normally supplied by a donor and is given through an intravenous (IV) line.
Regular blood transfusions may lead to a risk of iron overload. This is when there is too much iron in the body, which can cause serious organ damage. Talk to your doctor about the risks associated with blood transfusions.
Transplants
Bone marrow or stem cell transplants involve infusing healthy cells from a donor into your body to replace unhealthy blood-forming stem cells. Once infused, these healthy cells travel to your bone marrow where they grow and make other healthy blood cells that your body needs (engraftment).
Well-matched donors may be difficult to find and can carry many risks. Transplants are considered in eligible people when medical management no longer works.
Remember, your experience with PNH is part of an ongoing conversation with your doctor
As you progress through treatment, your doctor will monitor your treatment response. Based on your results and the information you share with them, they will discuss any adjustments that need to be made to your treatment plan.
Are there any helpful tips for living with PNH?
Whatever treatment option you and your doctor choose, remember that it is also important to take care of yourself. This means eating well, getting some exercise and learning to relax to help improve your overall health and wellness. Talk to your doctor before making any adjustments to your lifestyle.
WHAT YOU EAT MATTERS
Prepare your meals with sensible portions of whole or minimally processed foods
- Eat mostly plant-based food
- Aim for variety in your food
- Focus on foods high in vitamins and minerals, fibre and protein
- Eat at least 5 portions (400-600g in total) of non-starchy vegetables and fruits daily
- Include unprocessed grains and legumes with every meal
KNOW WHAT FOODS TO LIMIT OR AVOID
Processed Food
"Fast food"
Starchy Food
Salty Food
REST UP
It is important you try to get enough sleep. Getting enough sleep at night may help you have more energy during the day and limit fatigue.
SOME TIPS TO HELP REDUCE FATIGUE INCLUDE
Establishing a sleep routine so that you go to sleep and wake up at the same time each day