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Macular amyloidosis, also called macular cutaneous amyloidosis, can change the way your skin looks and feels. These changes may be upsetting or confusing, especially if you’re not sure why they’re happening.
If you’re living with macular amyloidosis, this means that your body is building up abnormal proteins called amyloids in your skin. These proteins can develop for several reasons. In some cases, the condition may run in families (be inherited through genes).
Here’s what you need to know about how macular amyloidosis can show up on your skin. If you think you might have this condition, talk to a healthcare provider as soon as you can. They can help diagnose the condition and guide you toward treatment that may help you feel more comfortable.
Macular amyloidosis usually causes visible changes in your skin. These skin changes can vary from person to person and may appear differently depending on skin tone. “This is like thick white stuff built up under the skin,” reported one member of MyAmyloidosisTeam.
“My skin looks and feels like I have a sunburn,” said another member.
You may wonder, “Is macular amyloidosis dangerous?” The good news is that it’s not, and this condition won’t spread to other parts of your body. But if your symptoms are bothering you, you can still seek treatment to help improve how your skin looks or feels.
Up to 25 percent of the time, macular amyloidosis happens along with a related condition called lichen amyloidosis. Your doctor may diagnose both conditions at the same time.
Knowing how macular amyloidosis shows up on the skin can help you decide when it’s time to talk to a doctor. The descriptions and photos below offer examples of what this condition might look like on different skin tones.
Macular amyloidosis causes flat spots called macules — areas where amyloid proteins have built up in the skin. One of the most common signs of macular amyloidosis is hyperpigmentation. This means that a patch affected by the condition will look darker than the other skin around it — deep brown or almost black on darker skin, and tan or light brown on lighter skin.
In some cases, areas affected by amyloid protein deposits may look blue or gray. These color changes may depend on skin tone, but they can also vary based on how your body reacts to the amyloid protein deposits.
Seeing unexpected pigmentation changes can feel upsetting or strange. If you’re unsure what’s causing them, check with your healthcare provider. They can help confirm whether the changes are from macular amyloidosis or something else.
Macular amyloidosis often shows up in symmetrical patterns — meaning the skin changes appear on both sides of your body in similar spots. The most common area affected is the upper back, especially between the shoulder blades. You may also notice skin color changes along the backs of your upper arms, near your triceps.
Some people develop symmetrical patches on other areas too, such as the:
Macular amyloidosis can sometimes cause the skin to look rippled or as though it has a weblike pattern. These patterns often show up in areas where the skin is discolored, such as on the upper back. Some areas may look darker while other areas look lighter or even match your usual skin tone. Sometimes the pattern is so subtle that only a dermatologist (a doctor who treats skin conditions) would notice.
If you see a new pattern on your skin that you never noticed before, especially if it looks rippled or lacy, that may indicate macular amyloidosis.
In some people, macular amyloidosis appears in a pattern that somewhat resembles a bicycle wheel. You might see a central area with lines or streaks coming out of it, like spokes on a wheel — what doctors sometimes call a “hub and spoke” pattern. Your dermatology team can use a dermatoscope (a lighted magnifier) to see this more clearly, but you might be able to spot this pattern just by looking closely at your skin.
Macular amyloidosis often causes pruritus (itching). For some people, it’s just a mild annoyance. For others, the itching can be intense and hard to ignore. Scratching a lot can change how your skin looks and feels. If the affected areas become thicker or look raised, it’s important to talk to a doctor. Scratching too much may cause lesions (sores) that can bleed or even become infected — all of which can make the situation worse and harder to treat.
Treatment for macular amyloidosis usually focuses on managing symptoms — especially itching. Since macular amyloidosis isn’t considered dangerous, your doctor may not recommend treatment for the skin changes unless they’re bothering you — but if they are, you have options.
Most treatment plans start with topical creams or ointments that you apply to your skin to help ease itching. Some of these treatments moisturize dry skin, while others contain medication to help reduce itching or inflammation.
If you want to address visible skin changes, your doctor may recommend additional treatments to help lighten dark patches or reduce discoloration caused by amyloid buildup. They’ll go over the benefits and possible side effects of each option and help you find one that fits your needs.
Some treatment options include:
These treatments have mixed results, and not all are suitable for every part of the body. Your dermatology team can help you decide which ones may work best for you.
Anytime you notice unexplained changes in your skin — like new pigmentation, itchiness, or unusual patterns — it’s a good idea to reach out to your healthcare provider. They can help you understand what’s going on and what to do next. They can also refer you to a dermatology specialist, who may perform a skin biopsy (take a small tissue sample to examine under a microscope) or test you for conditions such as macular amyloidosis.
Even though macular amyloidosis isn’t dangerous, it’s important to get any new or worsening symptoms checked out. Getting a clear diagnosis means you can start a treatment plan that actually works for you — and rule out anything more serious.
If you’ve already been diagnosed with macular amyloidosis, tell your doctor if your symptoms change or get worse. This might mean that your current treatment plan isn’t working as well. Your doctor can help you find the best cream or medication to help you feel more comfortable.
On MyAmyloidosisTeam, the social network for people with amyloidosis and their loved ones, members come together to ask questions, give advice, and share their stories with others who understand life with amyloidosis.
Do you live with macular amyloidosis? How does it affect your daily life? Share your experience in the comments below, or start a conversation by posting on your Activities page.
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