Enstillar
Posted Mon 19 Jun 2023 11.59 by Sickofpsoriasis
Hi, I am hoping to hear some of your Enstillar experiences.
Has anyone had a positive one? By that I mean used it for however long and it not come back with a vengeance?
Deciding whether or not to bother filling my last script or to give up. Doc just keeps prescribing it even though the warning has always been max 4 weeks.
Currently using probably twice a week to lower my usage but just can’t decide if it’s worth it anymore at all. Scalp goes in to serious shock if I stop it all together or try to use other products/wean off though.
Posted Tue 20 Jun 2023 19.21 by mt382
I had a discussion about enstillar with a private dermatologist today.
We had a really Frank conversation overall, and I've not found that to be the case with other dermatologists before.
She said that I should literally attack is with loads of enstillar twice a day until it goes, and not stop it ever. She said literally (as you say) reduce it to twice a week when the psoriasis is suppressed.
She said that guidelines for topical steroids are overly cautious and dated, and that the impact of having active psoriaiss outweighs the negatives of long term topical steroid use.
So not quite an answer to your Q - but my dermo advocated for aggressive use, with a little reduction when skin is clear - but she said I should never fully stop it and there was no reason why I should.
She said if I went 8 weeks with twice daily high volume use and my skin didn't clear, then it was time for NBuVB or systemic, but otherwise this long term use, when effective, is just how it has to be.
Posted Tue 20 Jun 2023 19.24 by mt382
I'll just add that I met with a senior consultant on the NHS some years ago, who showed me how much actual steroid there was in one tube of dovobet (same as enstillar), and then told me how much my glands produce daily (it was like 10x as much) and said that if I literally ate the entire tube I'm only increasing my systemic steroid load by like 10% on that day.
He also said the only other side effects is thinning of the skin, but with the hypertrophy of the skin in psoriasis, that seemed to be a desired effect.
With enstillar (and dovobet) he concern seems to more often be related to hypercalcemia due to the vitamin D, but again - I've been told the actual risk is negligible)
Posted Wed 21 Jun 2023 02.03 by Sickofpsoriasis
Wow. That’s really interesting and helpful for me at the moment. Thank you!!!!!
Posted Wed 21 Jun 2023 19.39 by mt382
That's okay! Steroids are a controversial subject on forums (it's important to remember than forums tend to attract people with severe disease resistant to treatment), as they do cause rebound when stopped. A lot of this, however, ia simply that you have a chronic disease and are withdrawing treatment. Some lucky people get triggered by X, Y or Z once or twice in their life and then don't tend to get triggered for a long time, but others just have it at all times.
Steroids aren't without risks of course, and if you literally covered your whole body twice a day for weeks you'd probably get some form of Cushings, mild or more, but presumably in that instance you'd realise that your treatment needed to move beyond topical anyway?
I'll just say that I've had plenty a pharmacist and GP tell me not to take it for more than four weeks. Every dermatologist and dermatological nurse, however, has said "go hard, for as long as it takes".
Posted Wed 21 Jun 2023 20.38 by JordsDerby27
I’ve been using this since September 22, I’ve used it for so long now it’s stopped working but if I stop using it my skin gets serious withdrawals from it, just be careful when using. I’ve also put on a lot of weight for constantly using steroid creams x
Posted Fri 23 Jun 2023 10.16 by bargainlovingmum
Hiya I’ve found enstilar is the only topical steroid that works well for me. I’m not completely clear, but nearly.
I have mostly small P patches dotted about on my legs. I put enstilar on every night just on the patches. I then use a sensitive skin moisturiser like Child’s Farm every morning and my skin has not been dry. I’ve also started using daily Hanna Sillitoe multi strain biotic drink for 3 or 4 months and I’m wondering if that’s helping from the inside as my skin is the best it’s been for 11 years.
The times enstilar has pretty much cleared my skin I’ve tried moving to a slightly weaker steroid as I was worried about withdrawal. I didn’t want to go to nothing and a GP recommended I reduce steroid use gradually through less strong creams daily.
I must say, tho, the P comes back pretty quickly even on a less strong steroid.
I’ve noticed that even on enstilar my skin has been ok in the sun this year and that has helped it clear more. Other years my skin on other steroids has burnt easily and gone very patchy.
Posted Fri 30 Jun 2023 23.43 by Sickofpsoriasis
Thanks guys. I really appreciate your responses and experiences.
I have tried to get off it with weaker steroids / alternatives and it just doesn’t work. So probably going to attempt to get to twice a week only.
Does anyone have any tips for how to get it out of your hair easier. Drives me CRAZY
I have to wash my hair literally 10 times.. 5 first night and 5 the second to get it out across two whole days…..! Have tried leaving shampoo in dry, have tried putting baby powder in to soak it all up (that is ok that technique) but really struggle with the consistent slime.
Posted Tue 4 Jul 2023 18.32 by EbbyLady
I was diagnosed with scalp psoriasis several years ago but am extremely fortunate to only have it on my crown and left side of my head. I was eventually given Enstilar foam and although I only use it occasionally I can massively sympathise with the awful problem of washing it out. I came across a post (I think on here) a couple of years ago from someone who recommended L'Oreal Elvive Extraordinary Clay Masque 150ml, comes in a green pot. I'm in UK and it's available on Ebay, Amazon and I think also in larger High Street Chemists and Phamacies.
Apply it liberally to the scalp and hair in small sections, comb through as best you can and leave on for 15 minutes. I wouldn't advise answering the door at this point, it's green and kind of stiffens in you hair...
After 15 mins rinse really thoroughly then wash your hair with a good quality washing up liquid/dish soap. Make sure you get a good lather, if not use a bit more. Rinse thoroughly, if you can still feel a bit of greasiness then wash again with the dish soap.
I follow with another wash with Capasal shampoo which I have on prescription but available to buy here in UK. It's a bit harsh so follow up with a good conditioner.
Elvive also do a shampoo and conditioner in the same range as the Clay masque, haven't tried them so can't comment. Also, last time I ordered online I received Elseve clay masque. Exactly the same, just a different name in other countries.
I really hope this works for others too. I know it sound like a bit of a palaver but can't recommend it highly enough.
Posted Tue 4 Jul 2023 22.08 by Sickofpsoriasis
Thanks so much for your reply. I will have a look for those products. Definitely down for a clay masque. It didn’t flare up your head worse or anything using dish soap over shampoo? It has crossed my mind before too to try that
Posted Wed 5 Jul 2023 14.48 by EbbyLady
Very good point to raise. I personally had no bad reaction from dish soap. I think the clay works by absorbing all the grease so if you rinse the clay out really well you could maybe skip it and just wash well with your regular shampoo? Or maybe do a tiny patch test with the dish soap before you try the clay masque?
Posted Mon 10 Jul 2023 15.20 by Mick1970
I saw a dermatologist at the start of the year, when I had plaques on my legs and guttate on my torso. He said that because I had so many spots on my body I should just apply Enstilar in long stripes and rub it in all over. I was concerned by this advice since every other source seemed to say 'keep it off unaffected skin at all costs'. But the posts above on doctor vs derm advice seems to confirm the dermatologists' advice. I've been off it for a while - I had UVB treatment that ended in March that left me completely clear, and a sunny holiday in May that I think kept it at bay, but in the last two weeks it has got worse on legs and body. I've not been using anything as doctor wants to see me on Friday before re-prescribing Enstilar; when I get it I'll "go hard"...
Posted Wed 12 Jul 2023 03.16 by Sickofpsoriasis
Interesting. Well I’ve been “going hard” on my scalp since I started this thread and the slime on my head is so annoying but I’ve managed to avoid full blown having to scrape out scales daily. Seems like I’ll have to get a new script at the doc soon too so I don’t run out/end up back at scraping out thick scales consistently. I really tried to get off the steroids as it’s been a very long time for me but it doesn’t seem possible
Posted Tue 18 Jul 2023 13.33 by rapture83 (edited Tue 18 Jul 2023 13.40 by rapture83)
Hi there,
I've been using Enstillar for a few years now, it does help to reduce some patches but it's a very short temp fix, you have to use it on the one area for 2 days max, sometimes more if needed and you will see your patches almost vanish, well not vanish but it will not be red and as visible but once you stop your P will almost instantly come back a few days later so bare in mind once you start using Enstillar you are more or less with it forever as if you stop cold turkey you will most likely have what is called a rebound effect where other patches will develop. This happened to me and I ended up with patches in many places, I only use it once/twice a week to try and keep on top of things but really only on my forearms and legs, never anywhere else even tho I have a spot/patch almost everywhere bar my face, neck and hands.
I have started UVB light treatment as of yesterday with my 2nd session booked in tomorrow, I'll be doing it 3 times a week for 6-8 weeks to see how it goes, when I asked about Enstillar they advised I should continue using it as it helps the patches after UVB treatment but to limit the usage to once per week.
If you want my advice I would say to avoid it as once you start you are in that zone of a potential rebound effect, don't get me wrong tho, if you do decide to use it you will be amazed at how good it is, your P will almost be gone but must stress again it's a very VERY short term fix, like putting a plaster on an open wound.
That's my personal experience with it but others may be different, others may not have as much as I do and it may keep them free from P.
Good luck!
Posted Tue 18 Jul 2023 13.56 by rapture83
@sickofpsorisis for your scalp I fully recommend you ask for Diprosalic Scalp Application, I've been using that for years and it's kept my scalp completely clear, I'm now at the point I don't use it until I can see a small flaky patch on my scalp, well not see it but if I say scratch my scalp and see some flakes I'll know I need to apply it so I'm pretty much doing it once a week. The application is more or less like a waterbase solution that smells like a hospital if you know what I mean, when first applied you will smell that but vanishes after 10 mins or so. I either just apply it an hour before my bed and the hair dries before I go to my bed or I do it when I come out of the shower then dry my hair with a hairdryer and as it's almost like water you don't need loads as you can apply it to a few parts of your scalp and then rub it all over. It's honestly a life saver as I've been down the road years ago applying stuff that makes my hair completely greasy and a nightmare to wash out and stinking of tar! Cheers
Posted Tue 18 Jul 2023 19.27 by mt382
For what it's worth:
I have psoriasis extremely resistant to topical and uvb. Topical, both dovobet and enstilar, thin my plaques a bit for a day or two but that's about it. They're still flaking by lunchtime if I apply the night before.
HOWEVER:
I applied it to my legs before bed one night and then wrapped clingfilm tightly around to go to sleep. The next day it was weird and peeling around the outside of the plaque, so I did it again, and then with a day In-between I did this alternate days for about a week and a half.
My legs were absolutely covered in red, itchy psoriasis, but by the week and a half it was so faint j could hardly see it. I took a break for a couple of weeks after that but its completely clear now. I know it'll coke back but I don't think an application with cling film every other night for a few days is a big price to pay for a few weeks of clear skin? Give it a go!
1
Posted Wed 19 Jul 2023 09.13 by Sickofpsoriasis
Thanks for your advice everyone!
Rapture83 I haven’t been offered that before! Non greasy sounds so good. Did derm or gp prescribe ?
Posted Wed 19 Jul 2023 12.45 by rapture83 (edited Wed 19 Jul 2023 12.51 by rapture83)
I get a repeat prescription for it from my GP, all I do is call them up and tell them when I need a new one and it’s ready to be collected the next day at my local pharmacy, same with my Enstillar. In order to get it tho they will most likely need you to see your GP so just get an appointment booked as it will probably need to be signed off by your GP, it might be worth calling tho and asking the reception to ping your GP to ask if you can be prescribed that, it might only need your GP to reply to them saying yes rather than you having to do a face to face appointment, worth a try!
My whole scalp was covered in P, I used T-Gel Extra Strength which kept it clear but they discounted that in the UK, only US now so tried everything under the sun until my GP suggested that to try! It will sting when you first apply it for about a minute as that’s it soaking in then will stop! Apply it once a day for a bit then once you see results you can bring it down to a few times a week right down to where I am now at once a week! It’s honestly the best and easiest form of scalp treatment I’ve ever had considering it’s like water, not greasy and doesn’t smell like tar!
Let me know how you get on :-)
Posted Fri 21 Jul 2023 01.05 by Sickofpsoriasis
Thank you sooo much!! I will definitely ask to see if I can get it :)
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