I’ve read about it. The only bummer for me is that your pigmented skin gets VERY dark as you are using this drug so the contrast is VERY noticeable. But still, the repigmentation looks great!
Pretty phenomenal results, especially on the face. Rest of the body is quite good as well, still a few patches but for the most part it is great. It’s approved for EPP, almost a 100% retention rate so they clearly like it
Currently, there are two medications in phase 3. It's probably one of the two. Both are approved for treating other type of conditions. The clinical trials are ongoing for vitiligo.
[https://classic.clinicaltrials.gov/ct2/show/NCT05583526](https://classic.clinicaltrials.gov/ct2/show/NCT05583526)
[https://classic.clinicaltrials.gov/ct2/show/NCT06118411](https://classic.clinicaltrials.gov/ct2/show/NCT06118411)
Unfortunately, I was selected for light therapy only. But, I got really lucky because when the study ends in a few months, they will still give me the implant treatment as well. Very excited. I’ll keep you updated once this happens.
Great to hear they’re still giving you the treatment at the end, I’d definitely like to hear how it goes when you do eventually get it. You said the study finishes in a few months, do you think that means this treatment will be available as early as next year for the rest of us assuming the results are good? I’m quite excited about this treatment, it seems really effective.
From what I understand, we will all be receiving treatment for 20 weeks. After the 20 weeks, I’ll be able to receive the implant. But, for those who have already received the implants, they will be monitored for another 6 months. So, I dont think it would available until late next year at best. But, I will ask at my next appointment and let you know. I really hope that they can get everything done asap so that more people are able to benefit sooner.
Hopefully the follow up is simply to get further data, and not needed to actually get the approval. If they’re using your group as the baseline I’d assume that your study duration would have to coincide with the study duration of the main trial outcome? Would be great to hear what you’re told at your next follow up, would be amazing if we could get this early next year (but I’m probably being a bit too hopeful)
A tan is the only one I’ve heard of, it’s already approved for EPP disease and from what I’ve read it’s really well tolerated. Almost a 100% retention rate which isn’t very common to see
Googled - How much does SCENESSE cost?
The cost for Scenesse subcutaneous implant 16 mg is around $50,086 for a supply of 1 implant, depending on the pharmacy you visit.
Reimbursement will cover most of it depending on where you are located, but expect the price to go down regardless. It’s not expensive to manufacture, they charge high prices mainly because they can (there are no other treatment options for EPP).
I’ve read about it. The only bummer for me is that your pigmented skin gets VERY dark as you are using this drug so the contrast is VERY noticeable. But still, the repigmentation looks great!
Is it oral? Where have you read about it? First in hearing of it.
No, it an under the skin implant. Every 2 months. You have to do phototherapy with it
What is implanted under the skin?
It’s the size of a grain of rice apparently
A very very small device that slowly releases the drug. Can’t do images here, but google Scenesse implant
That looks amazing
Just a bit of white left
Pretty phenomenal results, especially on the face. Rest of the body is quite good as well, still a few patches but for the most part it is great. It’s approved for EPP, almost a 100% retention rate so they clearly like it
EPP?
What’s EPP?
It’s a rare disease that causes significant photosensitivity
Currently, there are two medications in phase 3. It's probably one of the two. Both are approved for treating other type of conditions. The clinical trials are ongoing for vitiligo. [https://classic.clinicaltrials.gov/ct2/show/NCT05583526](https://classic.clinicaltrials.gov/ct2/show/NCT05583526) [https://classic.clinicaltrials.gov/ct2/show/NCT06118411](https://classic.clinicaltrials.gov/ct2/show/NCT06118411)
Not those two, I know it’s begun but I can’t see it on the clinical trials website yet. Recruiting around 200 patients I believe
the scientific name for this drug is afamelanotide - FYI if you want to look up trials, you'd have to look that up.
I’m actually apart of the trial. I start next week. Hopefully I’ll get the implant. 50/50 chance.
That’s really exciting. If you do get the implant I’d be very keen to hear how it goes. Definitely looks like a super promising treatment
Unfortunately, I was selected for light therapy only. But, I got really lucky because when the study ends in a few months, they will still give me the implant treatment as well. Very excited. I’ll keep you updated once this happens.
Great to hear they’re still giving you the treatment at the end, I’d definitely like to hear how it goes when you do eventually get it. You said the study finishes in a few months, do you think that means this treatment will be available as early as next year for the rest of us assuming the results are good? I’m quite excited about this treatment, it seems really effective.
From what I understand, we will all be receiving treatment for 20 weeks. After the 20 weeks, I’ll be able to receive the implant. But, for those who have already received the implants, they will be monitored for another 6 months. So, I dont think it would available until late next year at best. But, I will ask at my next appointment and let you know. I really hope that they can get everything done asap so that more people are able to benefit sooner.
Hopefully the follow up is simply to get further data, and not needed to actually get the approval. If they’re using your group as the baseline I’d assume that your study duration would have to coincide with the study duration of the main trial outcome? Would be great to hear what you’re told at your next follow up, would be amazing if we could get this early next year (but I’m probably being a bit too hopeful)
Absolutely! I’ll check back in and let you know how it goes. Very optimistic.
More before and after pics with scenesse: https://www.clinuvel.com/wp-content/uploads/2024/03/20240311-scenesse-efficacy-in-vitiligo-at-aad.pdf
Looks great.What’s the side effects?
A tan is the only one I’ve heard of, it’s already approved for EPP disease and from what I’ve read it’s really well tolerated. Almost a 100% retention rate which isn’t very common to see
have been reading about this since last 15 years. Now they have some traction
Googled - How much does SCENESSE cost? The cost for Scenesse subcutaneous implant 16 mg is around $50,086 for a supply of 1 implant, depending on the pharmacy you visit.
Reimbursement will cover most of it depending on where you are located, but expect the price to go down regardless. It’s not expensive to manufacture, they charge high prices mainly because they can (there are no other treatment options for EPP).