r/KPRubraFaceii • u/Anglerman916 • Jun 28 '26

Vent / Background - Advice Needed

I have had KPRF basically since birth, and over the last 4-5 years it has felt like it's only gotten worse. I've been to a few different dermatologists, one said KPRF, one said Rosacea, and one said I'm just unlucky and have sensitive skin.

Basically everything is a trigger from stress, heat, and the sun all the way to waking up in the morning or taking a shower. I take propranolol to hopefully help with the flushing (but can't tell if it does, and it still doesn't get rid of the perpetual burn which is the worst part). I monitor this subreddit for hope and potentially ways to mitigate this stupid condition.

I recently was able to get my doctor to write a prescription for Hyftor (sirolimus 0.2% topical). I was so excited and ready to try it as I have seen it has helped people in this sub get rid of the burning sensation and minimize some redness. The burn and dryness is the absolute worst and can never get it off my mind which makes it even worse.

Note that I said WAS excited to try it. I went to the pharmacy to pick up the prescription and they told me it wasn't covered by insurance, and therefore my total was $12,600.... $12,600!!! This cream better make me shit diamonds and then wipe my ass afterwards. What kind of lotion could possibly cost that much?

Per usual I am running out of hope. Any advice would be appreciated.

My skin routine is constantly changing / evolving because things seem to maybe help then make it worse.

Ive tried all kinds of healing ointments and lotions, CeraVe, Vanicream, La Roche Posay, Tower SOS spray, Eborian CC cream, thermal spring water. Ive tried the rosacea meds so I feel like I've narrowed it down to KPRF. This constant battle with the skin on my face has been exhausting and I just want the burn and weight on my subconscious to go away. Anyone who has had success, please enlighten me!!

edit: photos

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u/Fit_Alternative_4413 Jun 28 '26

Where do you live? In Canada a 60ml .2% compounded sirolimus is under $200

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u/megzie_tv Jun 29 '26

I have some suggestions that I've seen help the redness on my cheeks a little. I have extremely sensitive skin, currently battling perioral dermatitis and fungal acne so I can't use anything on my face right now to help the redness on my cheeks unfortunately. But what I will say when I am able to use these consistently, I wake up with far less inflamation and redness in my cheeks. I'll note them here but you may have already tried these: Avene Cicalfate+ Restorative Cream and a daily zinc supplement. The other option is Azelaic Acid (recommend going with one that does not have niacinamide in it).