Sometimes, people living with paroxysmal nocturnal hemoglobinuria (PNH) experience changes in their fingernails or toenails. These changes can happen because of PNH itself, complications of PNH, side effects of PNH medications, or other related issues. When red blood cells break apart too early, as they do in PNH, the body has to work harder to keep up. This can lead to changes in the body, including your nails.
If you are experiencing fingernail changes because of PNH, you’re not alone. While not everyone with PNH experiences these changes, they can be an important clue about what’s happening in your body. Make sure to share any nail changes with your healthcare provider.
If your fingernails look lighter or paler than usual, you may be experiencing something called an aplastic crisis. If your nails are usually pink, they may look white or gray. If you have a darker skin tone, your nails may look pink or lighter than usual.
An aplastic crisis happens when your body isn’t making red blood cells. This can happen when you’re living with PNH and you get exposed to a virus called parvovirus B19. Note that this is different from aplastic anemia, which usually develops much more slowly. When there aren’t enough red blood cells, the skin under your nails doesn’t get the oxygen it needs, causing a pale appearance.
In some cases, PNH can affect how your liver works. About 15 percent to 30 percent of all people living with PNH develop blood clots at some point. When these blood clots affect your liver, it can lead to a condition called jaundice.
Jaundice can also happen in PNH because of excessive breakdown of red blood cells (hemolysis), which raises the level of bilirubin in your body.
In jaundice, your skin, as well as the whites of your eyes and your mucous membranes, take on a yellowish hue. It happens when your liver can’t process a chemical called bilirubin, which is produced naturally in the body. The bilirubin can seep into other tissues around your blood vessels, like the skin under your fingernails. This causes your nails to look yellow because the hue from the skin underneath is part of what gives them their color.
Rough nails usually have ridges that run across the nail from one side to the other. They may also look like someone rubbed coarse sandpaper over them. Pitted nails may look shiny and have small dents or pits on the surface.
Researchers aren’t sure what exactly causes these nail changes in people with PNH. However, they may be linked to iron deficiency, which often develops in PNH because red blood cells break down over time.
Ciclosporine is a medication that lowers the activity of the immune system. It’s sometimes used to treat aplastic anemia, often in combination with other medications, too. One of its side effects is slower fingernail growth.
Slow nail growth isn’t usually harmful, but it may feel strange if your nails don’t grow as quickly as they used to. It may be inconvenient if you trim a nail too short or if you’re trying to grow them out for a special occasion. In most cases, your nails will look the same as usual — they just won’t get longer as fast. If this bothers you, talk with your healthcare provider.
Sometimes, chemotherapy or medications usually used to treat cancer are used to treat PNH. In addition, severe PNH may be treated with a bone marrow transplant. You may also get chemotherapy drugs to prepare your body for this procedure.
Some forms of chemotherapy can affect the nails. It can make them fragile, brittle, or thinner than usual. You may find that your nails break more often, or that they bend when they used to feel firm. It may feel like the skin under the nail is much more exposed than it usually is. There may be damage to the skin around your nail, the skin under the nail (the nail bed), the blood vessels that go to the nails, or the part of the nail that you can’t see, under your cuticle.
There are several ways to help manage brittle or fragile nails during chemotherapy. These include avoiding nail polish remover, keeping your hands as dry as possible, cutting your nails short, moisturizing your fingernails and cuticles, and possibly taking a supplement called biotin. However, don’t start any medications or supplements without talking to your doctor first, to make sure they’re safe for you.
Chemotherapy can also cause white, brown, or black streaks or bands on your nails. These streaks may look different depending on your skin tone. For example, white streaks may look like alternating colored bands across the nail. These bands can be thin or thick, and you may notice several on each nail.
Some side effects from chemotherapy improve slowly after treatment ends, but some nail changes may be permanent. Because nails grow pretty slowly, it can take some time to see whether these changes fade.
If you notice any changes to your nails or the skin around them, or if you have questions about PNH, talk to your doctor right away. They can help you figure out what triggers your PNH and what treatment options are right for you. They can also evaluate you for other conditions, such as aplastic anemia.
Make sure to let your doctor know if your nail abnormalities are painful or uncomfortable. They may be able to adjust your treatment or recommend ways to reduce the discomfort.
On myPNHteam, people share their experiences with PNH, get advice, and find support from others who understand.
Have you experienced nail changes with paroxysmal nocturnal hemoglobinuria? Let others know in the comments below.
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I Have Been Taking Ultomiris For PNH Since The End Of August 2025. A Lot Of My Symptoms Of PNH Have Disappeared.
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