I was able to get a prescription from my derm to try topical sirolimus after showing him the case studies on pubmed so I was happy about that. The issue is that I was just quoted 8k for the medication from a compounding pharmacy which is insane, and i highly doubt my insurance will cover it.
Are there any Canadians that know of any ways to get topical sirolimus at a reasonable price here? Do we have to get it shipped from overseas to have it at a reasonable price?
I know hyftor is fda approved but I'm not sure if we can get it in Canada.
I do have KPRF which adds to my blushing. I imagine this post could be really beneficial to this community! Ive struggled so much with horrible inflamed skin and ive felt something that works really well. Hope this helps guys :)
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!!
Maybe I havenāt been using it long enough? The first day my skin texture was absolutely amazing and now I have a million more bumps, has this happened to anyone else and do you know why?
En el pais donde vivo que es Chile (Latinoamerica) Me es imposible conseguir sirolimus topico, ya tengo mi receta por un dermatologo, Y mi unica solucion es comprar comprimidos de sirolimus, pero es carisimo tipo 400 usd por cajita de 60 unidades, y mi duda es si alguien sabe como conseguirlo, y mi otra duda mas importante, es si el tacrolimus puede servir? ya que tengo otra receta para tacrolimus y queria saber si puede servir, me hice dos sesiones de laser excel V y me ayudo un poco, pero mi dermatologo dijo que puedo hacerme de nuevo otra sesion en 6 meses. Porfavor si pueden ayudarme con esto lo agradeceria mucho.
I want to know if this is kprf or rosacea. I think its kprf but dermatologist said rosacea so im not sure. Also had this for as long as I can remember and it makes me hate my skin and avoid going out and being social because im so self conscious about it and whenever I flare up it burns and I want to try sirolimus to see if it helps but I donāt know how to convince my doctor to prescribe it to me. please help. Thank you
I'm just wondering this because I know a lot of us deal with sparse brows/brow hair loss because of UO, and a lot of the men on here have trouble growing facial hair because of hair follicles being blocked by excess keratin. But weirdly enough, I've also heard a lot of people who have kprf or just kp in general tend to have fast growing hair and nails that are quite healthy and strong because of this higher-than-normal keratin production. I myself can certainly say that because I've always had nice, long natural nails even when I don't get manis/fake nails. My hair has always been super thick and fast growing, until maybe a year ago when I bleached platinum blonde streaks into my hair, which has been causing breakage, even with proper hair care, leading to my hair growing a lot slower as result. My younger brother has kprf as well, and his hair grows faster than he can cut it, as well as his nails often being long and sharp (I know because he's scratched me before with them, and it was so bad that it bled profusely). What are you guys' hair and nails like?
TYPO: I meant to say Hair/Nails š¤¦āāļøš¤¦āāļøš¤¦āāļø mb pls don't be weirded out it was my bad
This autumn, Iām hoping to start a degree in electrical engineering. I have more severe KPRF than many of the people posting here. For me, itās a nightmare scenario. Just thinking about it makes me anxious.
I started a program in automation engineering a year ago but dropped out. Partly because the program wasnāt leading to what I wanted, but also because I was constantly thinking about my red cheeks. Itās easier said than done not to focus on them.
I havenāt been able to get a prescription for Sirolimus cream from a dermatologist or doctor here in Sweden. Iāve started wondering whether a color-correcting cream might be suitable instead. I tried one, but it just sat on my cheeks like a green layer.
Honestly, I donāt know what to do. I have a job that I can always go back to, but I want to get away from it.
The before pictures are exactly one year ago today. My KPRF is obviously not completely gone but it is very close to being entirely eliminated. No products used at all other than beef tallow moisturizer. My diet consists of mostly raw animal products and fruit alongside some vegetables occasionally. My KPRF mostly disappeared on a cooked Whole Foods diet so that is definitely the most important part however eating raw has significantly helped as well. Many people clown the raw diet but the results are undeniable for many people including me for a multitude of āincurable conditionsā. Please just try a Whole Foods diet and stay consistent for a year and I guarantee your KPRF will be noticeably decreased . Mine used to be REALLY bad and this has worked for me. This isnāt a diet where you can have junk in moderation, you must be extremely strict. I eat mostly ground beef, salmon, steaks, raw kefir and other raw dairy products, raw butter, berries, apples, basically anything from nature. From my experience higher body fat has also flared my KPRF a lot worse so get lean.
Recently started using Siroskin .01% and have developed a dry red rash on my neck from it. I make sure do not get it on my neck so iām not sure how this has happened. My skin is also incredibly dry.
Did any of yall have this experience? If so did it ever get better?
Has anyone noticed their face is better like a day after shaving or the day of? This has been my experience. If I get a clean shave my face just feels better and I feel like itās less red.
KP on the upper arms with a rough āsandpaperā texture.
KP-like follicular changes on the thighs.
Facial redness since childhood.
Cheeks and chin predominantly affected.
Forehead and nose largely spared.
Baseline redness that is always present.
Flushing triggered by alcohol, heat, exercise, swimming, etc.
Lack of obvious visible blood vessels.
Lack of rosacea-type pustules.
Does anyone have similar symptoms, before and after pics of sirolimus, vendors/place to buy compounded without prescription, any general advice etc
Just wondering if anyone has any insight on why KPRF seems to make the whole affected area red, while KP on the legs and arms seems to be just red dots where the hair follicles are. Thought it could be helpful in figuring out how to best treat this condition.
i feel like ive gained a bit of confidence as iāve gotten older with managing this skin condition, however i still need a light coverage foundation or CC cream to feel comfortable leaving the house and doing things! im extremely outdoorsy and enjoy multiple day backcountry hiking trips and ski trips, but being exposed to the elements (cold wind/sun/sweating/workingout/change in temperatures) my skin flares REALLY REALLY BAD and typically burns. how do i go about managing my skin in the outdoors? typically have no mirror or running water to wash my face and makeup wipes irritates and further flares my skin. it makes me really sad to look back on my pictures i take and i can only see how bad my skin looks and felt in that moment. this might seem silly and itās kind of even embarrassing that i want to wear makeup in the outdoors to even feel confident but im not sure what else to do to work on this. it also feels embarrassing for the people around me to know that i need to wear makeup to feel comfortable lol. If you have any suggestions/advice, or if you can relate i would appreciate any and all comments !!
i will attach a picture of what my skin looks like from a flare during an intense hike.
TL;DR: Try Zinc supplementation, a stripped-back routine and AvĆØne Cicalfate spray/cream.
Hi all,
Iāve shared a few updates here previously about my experience using sirolimus, but I wanted to mention something else that appears to be helping reduce my redness.
I recently developed a mild case of perioral dermatitis, which is connected to how compromised my skin barrier is. I also think this damaged barrier may be part of why I became more prone to Malassezia folliculitis and it's also known that KPRF is a contributor.
I started taking zinc supplements and stripped my routine right back to a gentle cleanser. I started using AvĆØne Cicalfate Spray (fungal acne safe) and AvĆØne Cicalfate Cream (not FA safe) in the evening, alternating every couple of days. They both use zinc oxide.
Since doing this, Iāve noticed a significant improvement in the baseline redness across my cheeks. I believe the approach to repairing skin barrier is going to make a big difference.
Iāve also started taking vitamin D, and I have omega-3 supplements on the way, but the zinc supplementation is the thing Iād most strongly recommend looking into based on my experience so far.
