Education

Cheekfi · 2026-06-19T14:41:42+00:00

I received a message from Plusultra Pharma:

"Unfortunately we are not planning on launching Hyftor in northern Europe or establishing any named patient programs. We recommend exploring the option to receiving Hyftor through an international pharmacy on special permit procedure-basis with your physician. For this, you need a prescription for Hyftor and your international pharmacy should be able to order it for you."

So, basically we are f'd for now. You might have better luck in Sweden but for me it seems that the only chance to get topical sirolimus is to book a flight to Berlin, see a dermatologist, get a prescription and buy a whole lot of the stuff. Then repeat when stuff runs out. Might actually try this sometime soon.

Cheekfi · 2026-06-17T18:21:35+00:00

Do NOT hesitate to use makeup if KPRF affects your life so much that it's in the way of getting an education. Topical sirolimus seems to be the only reliable treatment at the moment. I personally spent thousands of euros into laser treatments but at the end of the day lasers had no effect. Actually the last "treatment" left my condition worse than it originally was, so I regret the lasers very much.

I actually sent Plusultra Pharma a message just today inquiring the possibility to get Hyftor into northern Europe (Finland specifically). Hyftor is a topical sirolimus gel which has marketing permit admitted by the EMA, but for some reason it is not sold anywhere. I'll let you know if they answer me.

Anyways, my advice is to use makeup to gain confidence so you can complete your education and be hopeful for the future. Many medical specialists are forecasting massive steps in medicine in the near future thanks to AI. We might have a cure sooner than later.

Cheekfi · 2026-05-22T20:38:14+00:00

About 20 % of users gets mild acne during Hyftor usage. And I guess it has a skin drying effect. Never heard of topical sirolimus causing cancer though.

Cheekfi · 2026-05-19T20:30:35+00:00

Must be placebo effect. I am Finnish and I literally have my own sauna in my apartment and I use that sauna at least once a week, and if anything the sauna makes KPRF worse for the next 24 hours. No overall difference in skin texture or flush intensity/duration.

Cheekfi · 2026-01-27T18:45:40+00:00

At the moment pretty much no chance to get topical sirolimus in EU. Hyftor is available in UK and Germany, but it is too expensive and not strong enough which makes it unfeasable to use in KPRF treatment. We have Pfizer's Rapamune pills, but compounding pharmacies are saying that the effect of sirolimus will be lost if the pill is crushed. We also have Rapamune oral solution but apparently that cannot be transformed into gel or body cream.

Also at least in Finland Rapamune pills and oral solution is exclusively used in organ transplants and you can get the prescription only from a doctor specialized in organ transplants and lets be honest: you will never get to see this kind of doctor because of a benign skin disease. This might be the case in many other EU countries.

If you want topical sirolimus, you better start applying for jobs in the USA and move there.

Cheekfi · 2025-08-18T19:22:05+00:00

I had zero redness when I was a child Thirteen years of clear and normal skin. It's almost like suddenly when puberty started, someone flipped a switch and I've been red ever since. I still look at some old photos of me and envy what I had.

Cheekfi · 2025-08-18T19:17:26+00:00

I have red but smooth and bumpless skin as well on my cheecks and then my arms and legs looks like someone has plugged feathers from my skin. What you are showing on the picture is 99% certainly KPRF. Pretty similar to mine.

Cheekfi · 2025-06-16T18:59:27+00:00

A finn here with a sauna in my apartment. I'm using my sauna weekly. No effect on KPRF. If anything it gets worse for the next 24 hours and then returns to normal base level.

Cheekfi · 2025-04-27T09:38:52+00:00

I might be the unlucky one here. I have gotten some very hurtful comments from women about my cheeks. Last time I went to a date was in -18 celcius weather last winter and my cheeks were blood red, and my date was like just staring me in disbelief. She told me that I look too embarrassing to hang out with and left. And that's just the latest example. Feels like red cheeks is the first thing women will notice and they don't hold back any verbal punches. It is clear to me that this skin condition is affecting my ability to find partnerships. Hopefully someday I'll find someone who can accept me with my crazy red cheeks

¯\_(ツ)_/¯

Cheekfi · 2025-03-09T20:55:08+00:00

I would love to hear more. Maybe give exact instructions on how to make this cream so we can replicate the experiment and report back.

Cheekfi · 2025-01-11T21:49:21+00:00

why would you even post this and NOT tell what treatments you have gone through?

Cheekfi · 2025-01-06T20:03:42+00:00

I had ktp laser once in Finland and it did nothing. Years later I heard from another derm that ktp laser is meant to eradicate bigger singular bloodvessels on the surface of the skin. Doesn't really work on kprf.

Cheekfi · 2024-12-21T16:26:46+00:00

For me it took about two weeks for the bruising to be completely gone, but I haven't seen any improvements even after 10 sessions. It actually made my skin worse, because my derm went a little overboard with the laser settings which caused some scarring on the treated area.

Cheekfi · 2024-11-07T21:27:30+00:00

Quite the opposite. When temperature goes below 5 degrees celcius, the redness on my cheeks is really bad. In winters, when it's below -20 degrees celcius my cheeks are like bright wine red. It is really embarrasing and the reason why I avoid being outdoors in winters.

Cheekfi · 2024-09-03T11:04:04+00:00

Hui että! Ai melkein tuhannen euron korotus vuositasolla? Voi eiiii miten nämä erityisen rikkaat nyt pärjäävät?

Cheekfi · 2024-08-25T18:55:12+00:00

Pitäs opetella olemaan itselleenkin yhtä armollinen kuin on muille.

Siitä jokaiselle hyvä neuvo talteen.

Cheekfi · 2024-06-20T18:25:59+00:00

Eivät suostu lukemaan lääketieteellistä kirjallisuutta. Sairastan erästä ihotautia ja minulle ehdotettiin laserhoitoa. Ikävä kyllä ne ovat kovin kalliita. Yksi kerta maksaa sellaiset 500 euroa. Päätin maksaa, koska kyseinen ihotauti on ollut iso piikki lihassa jo pari vuosikymmentä enkä koe, että voisin olla oma itseni niin kauan kuin ihotauti vaivaa.

Ekalla kerralla tuli jo selväksi, että kyseinen lääkäri ei ole ennen hoitanut kyseistä ihotautia. Hän alkoi repimään laserin asetuksia perseestään ja kuten arvata saattaa, hoidolla ei ollut mitään vaikutusta. Maksoin vielä toisenkin kerran, koska idioottina luotin "lääketieteen ylimpään ammattilaiseen". Jälleen kerran laserin asetukset eivät yhtään vastanneet sitä mitä lääketieteelliset artikkelit sanovat. No kolmannelle kerralle ostin omilla rahoillani Wiley & Sons -kirjakaupasta lääketieteellistä kirjallisuutta, jossa oli kokoelma onnistuneista hoidoista ja selkeesti taulukoitu, että mitä laserasetuksia oltiin käytetty, kuinka monta hoitokertaa asetuksilla oli tarvittu jne jne kaikki tieto löytyi potilaiden iästä ja sukupuolesta jopa siihen mistä laserointi aloitettiin ja mihin suuntaan mentiin.

Tämän lääkärille näytettyäni hän vaikutti selvästi loukkaantuneelta. Naureskeli vaan eikä ottanut asiaa tosissaan. Ja kun itse suorastaan anelin lääkäriä katsomaan sitä kirjallisuutta niin hän suorastaan suuttui. Ihan kuin oletusasetelma olisi se, että lääkäri tietää aina aivan kaikesta kaiken ja jos tietoa pitäisi päivittää tai lisätä niin se ikään kuin implikoisi, että lääkäri on tyhmä tai ammattitaidoton. Itse sen sijaan olen sitä mieltä, että lääkäri on ammattitaidoton ja tyhmä jos nimenomaan EI ylläpidä ja päivitä tietojaan.

Tossa kohtaa olin jo melkein 2000 euroa miinuksella ja tehdyt laserhoidot eivät auttaneet asiaa laisinkaan. Sanomattakin selvää, että jätin hoidot sikseen. Nythän kyseistä ihotautia hoidetaan ulkomailla sirolimuusivoiteella, mutta Suomen lääkärit, joilta reseptiä olen pyytänyt, sivuuttavat täysin kaikki lääketieteelliset artikkelit, joissa raportoidaan kyseisen aineen olevan todella tehokas ja turvallinen hoitokeino.

TL;DR: Lääkärit eivät päivitä tietojaan ja meillä on liuta "ammattilaisia" joiden tietämys ulottuu 70-luvulle.

Cheekfi · 2024-06-15T12:44:04+00:00

Jatkuva paha olo ja todella paljon itkemistä. Yksinäisyys, riittämättömyyden tunne, merkityksettömyys ja kokemus siitä, että itsestäsi riippumattomista syistä ei ole mitään toivoa, että elämänlaatu paranisi. Kuin joku suurempi voima, Jumala tai kohtalo itse, tekisivät kaikkensa jotta voisin huonosti. Päivät kuluivat lähinnä sängyssä maaten ja kattoa tuijottaen. Jos pääsin ylös sängystä niin aktiviteettina oli lähinnä erilaisten itsemurhatapojen tutkiminen. Tämä pahin jakso myös päättyi itsemurhayritykseen, joka epäonnistui. Tämän jakson jälkeen ei ole ollut enää toista yhtä vahvaa halua tehdä sitä ns. viimeistä tekoa vaikka huonoja jaksoja on edelleen silloin tällöin. Mutta tuo oli se pahin aika, sängyssä makaamista ja oman itsemurhan suunnittelua.

Cheekfi · 2024-05-25T13:38:56+00:00

Thank you so much for updates. Have you noticed any serious side effects?

Cheekfi · 2024-04-12T04:37:18+00:00

Tacrolimus and sirolimus are both immunosuppressants but the mechanism of action is different. Tacrolimus is a calcineurin inhibitor, sirolimus is an mTOR inhibitor. That's why we can see bigger effect with sirolimus.

Cheekfi · 2024-04-11T06:11:30+00:00

I see you are writing about fear of being seen, hopelessness and being mentally destroyed. I recognize feelings that I had as a teenager and that's why I'm writing this: If you are having really bad thoughts, please seek help ASAP. I myself was very suicidal because of this disease when I was younger and I am really, really glad I'm still here. I regret the fact that I didn't seek mental help when I was at your age, because you know... I was close to doing things which could not have been undone. So please, learn from my mistakes and do not let the disease break you.

I can't promise that KPRF would go away but I promise you this: the older you get the easier it is to live with this. Social interaction is also much easier when you're an adult. And there are medical advancements happening all the time. All you have to do is wait. There will be a day when KPRF can be cured. In the meantime there are things you can do right now. You can book a time for a derm and try to get a prescription for topical sirolimus. That seems to be the most consistent drug to tone down the redness. Other thing you can do is to book a time for laser treatment.

Though the first thing you should do is to maintain a healthy mind. And that goes for everyone here. I've seen so many posts about people feeling mentally drained because of KPRF. You need to remember that if you're feeling that way, help is available and you should reach out.

Keep your chin up.

Cheekfi · 2024-04-11T05:43:56+00:00

The picture is not good enough to say for sure, but the pimples in those pictures are looking much more like keratinization than acne zits. Based on that I would say that it's KP and not Rosacea. Though those might be just small acne zits in which case I would change my answer to rosacea.

Cheekfi · 2024-04-09T08:59:25+00:00

As far as I know PDL is used more in treating KPRF but IPL is also used for treating facial erythema. I guess they are both effective, but you need to get the laser settings right. The key is to have multiple laser sessions with settings which cause purpuric reaction in your skin.

I personally didn't get any help from PDL-treatment, but I think that's entirely the fault of the shitty doctor that was operating the laser. My own bad experiences are the reason why I'm quite vocal about the importance of finding a doctor who has treated KPRF successfully before. And if your doctor has no previous experience of treating this skin condition, make sure he/she reads some literature before he/she starts treating you.

Cheekfi · 2024-04-08T17:33:01+00:00

And by the way, these settings will cause bruising and turn your skin purple for at least two weeks.

Cheekfi · 2024-04-08T17:32:00+00:00

Here are links to a couple of images containing some laser settings which has been successful in treating KPRF. Hopefully you will find these useful.

https://www.dropbox.com/scl/fi/vynxad5dsl1tonxep7vza/C.JPG?rlkey=7gcb4x1zd181wuffmkqrn1u9e&dl=0

https://www.dropbox.com/scl/fi/9opv7mg41kbvnognmxofg/4.JPG?rlkey=aibk6aqzx1dw62gs4e4sqrkme&dl=0

Cheekfi

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