Macular amyloidosis can cause skin discoloration and itching. These symptoms can be very uncomfortable and affect your self-esteem.
In macular amyloidosis, abnormal proteins called amyloids build up in your skin. There are a few types of amyloidosis that can affect your skin. Macular amyloidosis occurs along with another type of amyloidosis called lichen amyloidosis up to a quarter of the time.
If you’re living with macular amyloidosis, here’s what you need to know about itching and skin discoloration.
The exact reasons you experience skin color changes and itching with macular amyloidosis aren’t fully understood. Below we explain more about the causes of these symptoms.
Macular amyloidosis changes the way your skin looks. When amyloid proteins are deposited in your skin, it leads to hyperpigmentation in those areas. Hyperpigmentation means your skin looks darker than its normal tone. The areas of your body affected by macular amyloidosis may look either brown or blue-gray. It’s important to note that this will look different depending on your underlying skin tone. On dark skin, the patches may look dark brown or nearly black. On lighter skin, they may look tan or light brown.
Researchers don’t know exactly why macular amyloidosis causes your skin to change color. More research is needed to understand exactly what happens with amyloid deposits in your skin and how they change what you see on the surface of your body.
Most people with macular amyloidosis will experience itching, or pruritus. This is related to inflammation connected to macular amyloidosis. Certain genetic mutations (changes) that are sometimes associated with macular amyloidosis are also associated with an inflammatory response, which can lead to itching.
Some researchers think itching may be part of what causes macular amyloidosis. When inflammation leads to itching, you’re likely to scratch the itchy skin. Scratch enough and you can cause some skin cells to die. This releases the proteins inside the cells, including the abnormal ones associated with macular amyloidosis.
Researchers also know that scratching an itch can actually make the skin itchier. This is called the itch-scratch cycle.
Different people experience skin discoloration and itching related to macular amyloidosis differently. However, there are some commonalities. Understanding these may help you better understand what you’re experiencing on your own body if you’ve been diagnosed with macular amyloidosis.
As noted above, macular amyloidosis can cause your skin to look either darker brown than normal or a bluish-gray color. The areas of your skin that get discolored by macular amyloidosis are called macules. You’re most likely to see macules across your upper back, between your shoulder blades, or on the outside parts of your upper arms. You may also see them on your face, collarbone, neck, armpits, and breasts, or even on your legs, like on your shins.
These areas that are discolored may look like they’re rippled or have a web-like pattern. Some people see a central discolored area (a hub) surrounded by discolored spokes that seem to go out from that center. This is called a hub-and-spoke pattern.
In the process of getting diagnosed with macular amyloidosis, your dermatology team may look at your skin with a device called a dermatoscope. This lets them see what is going on in more detail. When they do this, they may see a central area that is either white or brown. This will be surrounded by brown areas that can look like streaks, blobs, leaves, or dots. You won’t be able to see this without the scope.
Itching related to macular amyloidosis generally occurs anywhere your skin becomes discolored. You might itch a lot, but you might also only itch a little bit. If you have several patches of macular amyloidosis on your body, you might find that some of them itch more than others.
There’s no single way that your doctor will try to stop itching related to macular amyloidosis. They may tell you to limit contact between the itchy area and anything else, including clothing, and to avoid scratching. They may also prescribe treatments like topical corticosteroids or topical calcineurin inhibitors or recommend topical products you can purchase at the drugstore.
If those don’t work, your doctor may suggest other options, including oral medications, phototherapy (including laser therapy), dermabrasion, or nerve stimulation that might help stop itching. Some of these treatments may change the appearance of your skin too.
If you live with macular amyloidosis, it’s important to find a dermatologist with experience treating your condition. Even though macular amyloidosis isn’t life-threatening and doesn’t spread to any organs other than your skin, it can impact your quality of life. This is especially true if it significantly changes the way your skin looks or if you’re dealing with severe itching.
MyAmyloidosisTeam is the social network for people with amyloidosis and their loved ones. On MyAmyloidosisTeam, members come together to ask questions, give advice, and share their stories with others who understand life with amyloidosis.
Do you live with itching and skin discoloration from macular amyloidosis? How do these symptoms 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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