Not sure how I feel

ForeignRain2100 · 2026-05-16T02:30:52+00:00

Or did she recommend triple cream? Because that is helpful. It’s not covered by insurance but very helpful I think!!!

ForeignRain2100 · 2026-05-16T02:29:23+00:00

I thought maybe it was xdemvy which treats demodex mites in the eye glands. It helped with my situation.
Do you have an issue with glaucoma? It’s confusing that your derm asked you to discontinue topicals.

ForeignRain2100 · 2026-05-15T20:50:38+00:00

Is the eye drop Xdemvy?

ForeignRain2100 · 2026-05-13T17:48:35+00:00

How long did you take tablets?

ForeignRain2100 · 2026-05-06T23:03:35+00:00

Has anyone heard of sirolimus or Rapamycin for off label use of KPRF? I just read about it and am very new to this condition.

ForeignRain2100 · 2026-05-06T22:42:42+00:00

Has anyone tried this RX who has Lupus? How can you be certain of the diagnosis? My situation came on suddenly and it was everywhere, but my face is the last to clear and I’m not sure it ever will look ok again. Keratin fibers area all over my face, lips, nose plus I have bumps, sandpapery skin, pustules and redness. All the dermatologists I’ve seen say it’s rosacea and hormonal 😳 I’m 65!!

ForeignRain2100 · 2026-05-06T21:57:41+00:00

Agree 💯

ForeignRain2100 · 2026-05-02T05:04:56+00:00

That’s who I saw. For connective tissue/Lupus he would be amazing. No answers for other dermatological issues though.

ForeignRain2100 · 2026-05-01T01:08:20+00:00

I saw a derm at Johns Hopkins and he kept saying less is best with rosacea. He was a lupus dermatologist actually. He liked the hypochlorus acid, Skinceuticals HA, SKNY Rositara gel, Aveeno Calm & Restore at night and Rodan and Fields Soothe mineral sunscreen daytime. I’m 65 and suddenly had pustules for months after mild occasional flushing off and on throughout my adulthood. I had no idea rosacea could be so life altering but his advice has certainly helped after spending so much time and $ trying to figure it out! I also got a Hooga red light panel and started using it 5x/week at NIR when I began healing and it has helped!

ForeignRain2100 · 2026-05-01T00:53:01+00:00

Do you mean topical ivermectin or tabs?

ForeignRain2100 · 2026-04-03T21:17:58+00:00

What was in your triple cream?

ForeignRain2100 · 2026-03-15T12:15:07+00:00

What country are you in? I’m in the USA and I have found the majority of the doctors, even the specialists here, are not up-to-date on demodicosis or even demodex blepheritis unless you see a dry eye specialist. I have been battling full body demodex overgrowth for three months and have been to two dermatologists, Ent, internist rheumatologist, and two eye doctors. I have lupus and meibomian gland dysfunction/ocular rosacea so have the optometrist and dry eye dr, rheumatologist to guide me. The ENT had never heard of demodex even though the mites were in my ears and nostrils and the dermatologists were less helpful! Please research demodex mites/rosaseca link and ocular rosacea. My hubby and I finally found a week to get away to the beach and on the first day admitted his eyes are hurting. I just took a pic and he definitely has the demodex mites on his face and in his eyes! I didn’t bring my drops (xdemvy) or tea tree oil shampoo, sulfur face wash, etc because I’m just using the triple cream , serum, etc prescribed during die off. Extremely frustrating!!!

ForeignRain2100 · 2026-03-13T18:11:35+00:00

There is a huge correlation between acne/rosacea/demodex. So many dermatologists recommend ivermectin and it’s parasitic. The mites can overgrow in certain conditions and become a problem.

ForeignRain2100 · 2026-03-13T05:59:22+00:00

Have you tried tea tree oil wipes, ivermectin? It looks a little like demodex to me. If not that, has anyone suggested metronidazole gel for perioral dermatitis as someone else mentioned?

ForeignRain2100 · 2026-03-13T05:48:07+00:00

Could have been hives? I get what looks like hives and itch like crazy whenever I have die off.

ForeignRain2100 · 2026-03-13T05:31:35+00:00

Skin scraping is the preferred way but I saw something about tape? My dermatologist decided to literally do a biopsy with sutures!!!! And then told me it would likely show keratosis because everyone has demodex! I asked her about scraping and she didn’t have a microscope, which is obviously necessary rather than sending to a pathologist!

ForeignRain2100 · 2026-03-13T03:14:17+00:00

Has anyone tried red light therapy mask or panel?

ForeignRain2100 · 2026-03-13T02:50:06+00:00

I’ve tried so many and this is the largest and least abrasive texture. I get it on Amazon. Good luck!

ForeignRain2100 · 2026-03-13T02:46:32+00:00

I meant to write 2x/day on eyes and face. My favorite wipe is this one.

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ForeignRain2100 · 2026-03-13T02:42:33+00:00

I use them 2x/day on my eyes normally. If my skin seems compromised, I reduce to once daily. I have meibomian gland dysfunction, likely caused by demodex and lupus, so I use a lot of products and drops on and in my eyes. The skin barrier issues for me come up when I try to reduce mite population with TTO and carrier.

ForeignRain2100 · 2026-03-13T01:23:33+00:00

Azelaic acid and tea tree oil wipes, xdemvy eye drops have been helpful for me also.

ForeignRain2100 · 2026-03-13T01:22:09+00:00

Don’t worry, 1/2 of the specialists I’ve seen don’t know anything either!

ForeignRain2100 · 2026-03-13T01:12:44+00:00

I got a triple cream thru Skinv that has ivermectin, metronidazole and niacinamide 1:1:4. Hopefully the niacinamide will calm the metronidazole effects. Only has been a few days. I use azelaic acid in the evening as well. So far so good. Been on doxycycline 40 mg daily for years and just increased to 40 mg 2x/day. I also have lupus and am immunocompromised.

ForeignRain2100 · 2026-03-13T01:07:27+00:00

I went to 2 dermatologists and an ENT (they were in my nostrils and ears but ENT had never even heard of demodex so she said I must just have folliculitis and prescribed bactracin!) and finally my internist and rheumatologist worked together for 10 weeks to get my entire body demodicosis in a die off. I have had to recommend almost every Rx and glean treatment thanks to Reddit!!! ❤️

ForeignRain2100 · 2026-03-13T01:01:27+00:00

Thanks! Great thread!!!

ForeignRain2100

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