I asked my sons dermatologist about this cream last week she said she’s never heard of it, bit hard to believe, do they not keep up with us new treatments I don’t know, anyway she looked it up on her computer @ said it’s not something that we would recognise . I’ll be waiting patiently for it to become available I’m the U.K. x
I'm just keeping this thread ticking along as I think this particular cream seems like a game changer, it certainly appears to work very well. I did write to the company that makes it, but didn't receive any reply. I suppose its hard to get to the 'right' person in these large corporations. Anyway if anyone else feels inclined to have a go........
Posted Fri 23 Jun 2023 11.33 by Tracyjane
Definitely 👍
Posted Tue 23 Jan 2024 12.39 by Linde
So, does anyone have an update about the availability in the U.K.?
Posted Tue 23 Jan 2024 15.03 by Woods
No Linde, nothing yet , it seems medicines are some of the slowest things to get approval on. Google Tapinorof and look at the National Library of Medicine clinical trials. The results are amazing. Anyway keep the post ticking along.
Posted Wed 24 Jan 2024 17.01 by kiloran From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023
Very interesting! It's like a biologic for the skin, blocking the same interleukin as some of them (IL-17).
The other thing is how it promotes repair of the skin barrier which is important when you've had plaque after plaque after plaque on an area. I've just come out of a flare where my hands and feet scaled completely and the lovely new pink skin is quite papery and delicate, I can see how something which toughens it up would be a good idea.
Certainly very promising!
More details from DermNet https://dermnetnz.org/topics/tapinarof
Posted Wed 24 Jan 2024 17.22 by kiloran From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023
As to the approval process it will likely get approved in the EU first - which will also make it approved here despite Brexit.
And then it being a new proprietary drug there will be an investigation by NICE and a funding decision. NHS will also be in discussions with the manufacturer on getting a discount
Posted Wed 24 Jan 2024 20.10 by Woods
Yes Kiloran, lots of trials already done. It's a pity that that couldn't speed the approval needed for the EU. I don't think we'll see it for a couple of years yet.
Posted Wed 24 Jan 2024 20.34 by kiloran From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023
I think there's quite a backlog due to COVID too - we found a lot of experimental off label uses (including using some of "our" biologics in COVID coma patients) and as a result a lot of stuff is going through approvals. I saw today that one of the COPD biologics is on trials for psoriasis too.
Posted Wed 24 Jan 2024 20.52 by Woods
I see what you mean, some 'jumping the queue' so to speak. It's actually quite difficult to follow how far it is down the road in the EU , but we can just keep searching, I was hoping that someone on here would be able to get a timeline.
Posted Fri 2 Feb 2024 21.21 by mt382
Yes, sadly it'll be a good 10-20 years until their patent runs out and other manufacturers can make it for less. There's always likely to be cheaper biosimilars coming out, though. So hopefully these types of topicals will be more readily available over the coming years!
Posted Tue 6 Feb 2024 07.14 by Tulip
I have been following progress with this too. It’s frustrating it is taking so long. I don’t really have much knowledge on these things, I hope the nhs do approve it for use despite its cost . As it appears to not require daily use, once psoriasis is controlled the cream can be not required again for a while. Which maybe would make the cost more worthwhile.
I wonder if someone from the uk could buy some in the US when visiting? Or would you need to be resident in the US
1Posted Tue 6 Feb 2024 07.35 by kiloran From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023
It's a prescription medication so you'd need to find a way for it to be prescribed whilst you're there. It's also something like $1000 a tube!
I did see it for sale via an Indian online pharmacy at a much cheaper price but there may be concerns over authenticity.
Regardless of all this you also need to consider the safety/legal aspect. Hopefully it will soon be approved in the EU which may open up easier routes for us in the UK (e.g Republic of Ireland)
Posted Mon 19 Feb 2024 15.14 by bbf
I wonder if we could get it from the Indian online pharmacy and send it to a lab to find out whats in it - so as to make sure it is safe?
Someone on a forum did the same with a Chinese cream that many were using (as it was for sale on Amazon) and was working really well. A person sent it to a lab and the result showed a high % Prednisone in it - which is a steroid and the % in it was way too high - so no good.
Maybe an option to try and get the Indian tapinarof - and send it to a lab here?
Im not sure how much it costs to get something like that looked into by a lab - but if it is too much for one person to pay - maybe we could set up a small fundraiser online and all donate a little - and then send it off to a lab.
Imagine if the cream is legit and affordable - that would be amazing for us all.
It could be years (maybe more than a decade) before we get Vtama here (if at all) ... I, for one, will be covered from head to toe by that time. 🫣
Hi, I read about this “miracle” cream last year, and asked at my dermatologist appointment…they had never heard of it.I came back to this site to hopefully see if we are any nearer getting this in the uk, it appears not.😩
I have had psoriasis for over 25 years, and it has never been in remission…only continually spreads over more parts of my body…and now unfortunately, face.
I like to think I “handled” my psoriasis fairly well for most of those years, but as it has now covered about 70% of my skin, I am struggling with it nowadays.
What really annoys me is knowing that someone somewhere has made a solution that “could” change my life, and probably tens of thousands of others here in the uk…yet here we are 2 years after American approval, still not able to access a genuine possible “life changing” medication.Let’s be honest, it’ll all come down to money here in the uk…if it could genuinely clear the horrible mess that is my skin, I would be more than happy to pay for it…I would find the money from somewhere if it really could improve my life.
Posted Tue 26 Mar 2024 16.24 by Tracyjane
Hi, have you considered a biologic. My son had it continuously for 3 years. When it spread to his face we begged his consaultant to prescribe a biologic when they did, after taking cyclosporine & methotrexate which I hated but we had to try & fail them. His psoriasis cleared up almost instantly.
Posted Tue 26 Mar 2024 17.28 by Woods
Yes I have considered a biologic also, but I had a serious health issue a few years ago and can't build up the courage to take something that 'may' weaken my immune response. But I completely understand someone who would want to.
I'm just hoping this is a less risky method, if we ever get it. But like the poster says it's very frustrating that there is a product available that we can't get.
Posted Fri 23 Jun 2023 08.05 by Tracyjane