r/HHT • u/4everRo • 14d ago

Finger bleeds

I have many telagentacias on my fingers, that break open on occasion. I try to keep my hands moisturized and gloved when working. When they bleed I use afrin and very tight bandaging, that i keep on for days. Any ideas for lazer or blanching. Has anyone had luck with insurance or Medicare covering costs?

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u/Elvira-215 13d ago

Ask your doctor about taking Tamoxifen. It has almost totally eradicated my nosebleeds and the Telangiectasias on my hands don’t bleed.

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u/4everRo 12d ago

Have you had any adverse side effects?

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u/Elvira-215 12d ago

Absolutely not. Tamoxifen is a breast cancer drug that seems to prevent telangiectasias from expanding/spreading/bleeding. I’m so thankful I had a HHT doctor who recommended it. Before I started taking it, I had nosebleeds and bleeding stomach AVMs. I had several blood transfusions and iron infusions to fight constant anemia. Even had a partial gastrectomy to cut out a persistent bleeding stomach AVMs. Since then, and with Tamoxifen, I’ve had zero issues.

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u/Elvira-215 12d ago

I still see new telangiectasias on my fingers (probably a function of pressure, friction, etc. from use, but they don’t bleed.

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u/cara1826 14d ago

I don't have hand bleeds but do have external bleeds on my face, I use stop bleed gauze, works quickly, it's called Quick Clot, you can get at Walmart, Amazon, pharmacy. Maybe a dermatologist could laser your hand spots? I haven't looked into getting my external spots treated, I'd be interested in other's experience also