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PNH Support Group FAQ (Frequently Asked Questions)



Category: Main -> WHAT CAN I DO TO COPE WITH PNH?

Question
·  Should I eat or drink anything special?
·  Should I take supplements?
·  What about herbal supplements?
·  Should I get flu shots?
·  What about exercise?

Answer
·  Should I eat or drink anything special?

Anything that promotes a healthy lifestyle will help you cope with PNH. You should eat a healthy diet and drink lots of water (2-3 liters per day). Good hydration is especially important. Drinking lots of water will help the body flush out the debris from red blood cell breakdown and will help keep your blood volume high.

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·  Should I take supplements?

Check with your doctor—don’t take anything he doesn’t know about. Most doctors will prescribe folic acid supplements. Folic acid is a B vitamin that is important in making new red blood cells.

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·  What about herbal supplements?

Some of us in the group have experimented with herbal supplements. Check with your doctor before trying them--some herbs thin the blood or otherwise interact with prescribed medications. Others are harmful and should be avoided at all costs.

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·  Should I get flu shots?

Consult your doctor before getting a flu shot. Some doctors recommend against them because they may trigger a hemolytic crisis. Others feel that getting the flu would cause a worse crisis.

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·  What about exercise?

In some people, heavy exercise may trigger hemolysis. If it does, you may need to scale down your workouts or switch to a milder form of exercise. Some of us have found gentle exercise such as yoga or walking to be helpful. Others have been able to maintain a regular exercise program. Each person is different, so you’ll have to find out what works for you.

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