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Real members of MyAmyloidosisTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

has anyone had their skin affected by this amyloidosis? If soʻ how was it effected ?⁰

A MyAmyloidosisTeam Member asked a question 💭
2 days ago
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A MyAmyloidosisTeam Member

Funny you should ask. I have recently had a few issues with my toenails getting weird growth with them as if they were not growing normally, sudden changes in the growth. The foot is swollen like yours was in the past from the way you described it as I recall. The Doctor examined the foot and told me nothing. I often think of your loss of a leg as the result which I have not experienced yet. I stopped reading the results of your experience after that because I was fearful of going down that path. Not that it helps at all. The toenail suddenly grew but the fingernails have been brittle.

2 days ago
Instant Answer

Yes, skin involvement is actually quite common with amyloidosis! Around 30–40% of people with AL amyloidosis experience skin-related symptoms. Many MyAmyloidosisTeam members have shared experiences with this.

Skin can be affected in several ways, depending on the type of amyloidosis:

- Purpura – Small purple, red, or dark Show Full Answer

Yes, skin involvement is actually quite common with amyloidosis! Around 30–40% of people with AL amyloidosis experience skin-related symptoms. Many MyAmyloidosisTeam members have shared experiences with this.

Skin can be affected in several ways, depending on the type of amyloidosis:

- Purpura – Small purple, red, or dark spots caused by bleeding under the skin, often appearing around the eyes
- Waxy bumps – Small raised lumps near the eyelids, neck, or armpits
- Itchy or scaly patches – Thickened, discolored skin areas
- Blisters – Fluid or blood-filled blisters
- Nail changes – Brittle nails, ridges, or discoloration
- Hair loss
- Skin discoloration – Brown, gray, or bluish patches Some forms of amyloidosis affect *only* the skin. These include:

- Lichen amyloidosis – Very itchy, scaly reddish-brown or darker patches, usually on the legs and arms
- Macular amyloidosis – Flat, dark brown or gray itchy patches, typically on the upper back or chest
- Nodular amyloidosis – Firm spots on the trunk, face, or limbs

It's always worth flagging any new or changing skin symptoms to your care team, as they can confirm amyloid involvement through a skin biopsy.

2 days ago

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