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Grover's Disease: What works to help find relief?

Skin Health | Last Active: Mar 17 1:04pm | Replies (1921)

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@impatient

My skin troubles started with what I self-diagnosed as a demodex infestation – extremely itchy and inflamed eyelids and eyebrows, which began during a stay at an unexpectedly shabby airbnb – which has seemed to slowly but steadily spread downward. The eyebrow thing started over Memorial Day weekend in 2018; by the end of summer, my whole face felt inflamed; by the end of the year I was diagnosed with rosacea and was starting to have an itchy neck with inflamation in the creases; bumps then appeared on my shoulders and chest, and I was diagnosed with GD based on a biopsy; now it's gone down my arms and is worst in my armpits and inside my elbows. The docs seem to see what's going on in different areas as unrelated – rosacea vs. GD vs. something fungal – but to me the spread of one kind of itchiness or another has seemed very steady, continually downward, so I can't help but feel they're related.

Anyway, I've been using soolantra or ivermectin cream on my face for the rosacea for at least a year and a half, and for many months – probably a year or so – also used it on the back of my neck, hoping it would help with the GD there, but I can't say it did. More recently, my insurance stopped covering soolantra or ivermectin cream, and it's terribly expensive, so I stopped using it on my neck at least a month ago, and my neck does not seem any worse.

I also tried a course of oral ivermectin, which is supposed to kill demodex, going to great lengths to sanitize all my clothes, bedding, hairbrush, etc. – but noticed no improvement at all.

The short answer: I've concluded that, at least for me, ivermectin doesn't help the GD much, even if it helps with the rosacea.

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Replies to "My skin troubles started with what I self-diagnosed as a demodex infestation – extremely itchy and..."

My fear is the your dermatologist may be grasping at straws. I had 4 separate/different diagnosis before they finally got it right. Please seek a second or third opinion. I have zero faith in the medical community. They only guess and throw medicine at you until something works. Be your own best advocate. There is another person on the Grover's Disease Facebook Page who was diagnosed with Grover's and it turns out her problem was scabies! I was able to find the Cilantro cure by doing my own research over a year ago and shared the info here so others could benefit. NO other Dr is suggesting it and most poo poo it! Even though it works on a great majority of sufferers.