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Anyone else dealing with Demodex Mites? What helps?

Skin Health | Last Active: Jun 18 10:37pm | Replies (160)

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@cmcg

Sorry to hear what everyone is going through. Thanks to all of you for sharing as I believe we have learned so much from each other! I’m a retired nurse and even told my dermatologist that I would do a grand rounds ( wkly or monthly medical conferences) on Demodex infestation. The lack of awareness among clinicians is astonishing to me! Nevertheless, I did get the “grant” for one year of treatment to XDemvy. My ophthalmologist tried the first round of prescribing and was told I wasn’t eligible. For the second round I called Tarsus myself and applied and waited a cpl of weeks and got the grant. So after paying hundreds for the first round, I received the second round free. I had mixed reviews on XDemvy…. It doesn’t kill 100%….. it gets them under control. I am now using Paul Mitchell’s tea tree oil, even on my (closed eye) eyelashes and I seem to be maintaining “control” not eradication. I use the shampoo for daily shampoo and body wash and the hair and body conditioner for my hair and whole body after shower. They are not gone but definitely better. I am very interested in learning about the erythromycin ointment. Is that taking care of the Demodex? Thanks all!

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Replies to "Sorry to hear what everyone is going through. Thanks to all of you for sharing as..."

Are the new eye drops more effective to kill the mites than focusing on treating the eyelids? Over time the price will hopefully reduce. Is the Paul Mitchell tea tree oil you use on eyelids totally tea tree oil or a lid wash that contains TTO? I was debating last night whether or to use the straight TTO on my eye lids. I made the mistake of diluting 100% TTO with water but discovered that doesn't work. Diluting it with oil sounds a bit counter productive since the mites are attracted by oil.

This Monday (3/18/24) is my last day of the Xdemvy drops and I have an appointment that morning with my dry-eye specialist to see how I did. Wish me luck!! I do other things in addition to the drops, so I won't know for sure what's helped. But at least I can now open my eyes in the morning without having to spray something on them.

I'm impressed you got it for free for your second round - congrats!! I paid $997 and was told the next would be around $750, but I like free better. I was hoping I'd only need the one round. We'll see. I had called Tarsus in January to find out about the grants they had and the person I spoke with didn't know anything about it, nor did my pharmacy. You've given me hope!

I believe the erythromycin ointment serves two purposes and killing them isn't it. First is for inflammation and second is to not let them mate or move around at night. You have to really get it into the lashes at the margins, top and bottom, which isn't easy. Don't do it if you want to read or watch TV; it's the last thing I do before sleep. The only thing that really kills them is 100% TTO, which I use on my eyebrows, and now in my nose. I'll be doing that for 6 weeks twice a day, like the Xdemvy.

I read today that the collarettes are debris as well as eggs, so washing the margins is really important. The best thing I've found is a tiny brush by "We Love Eyes" that I got from Amazon that use twice a day. I hated it at first but after using it dry and looking into a 7x magnifying mirror it's easier to do. Then I do the TTO foam and then a TTO wipe.

Let us know what department you spoke with at Tarsus! Have you seen their ads? They bill it as a mite party on our eyelids. They seem to be trying to lighten it up because people get grossed out when they find out everyone's got a parasite living on their face. They're also doing an outreach to doctors about it, so there's definitely progress being made!!

Again, congrats! Please share!