New and losing hope

Sorry to hear you're going through a bad time with this. Did you know Enstillar can be used as a shampoo? If it works elsewhere for you it might work on your scalp. I'm lucky with Enstillar in that it clears things up really quickly for me. Last week my arms and shoulders were absolutely covered in fine scale. Two days of Enstillar and they were completely clear. Check with your consultant but if it works for you you can keep using it long term. I've heard that GPs and community dermatology advise that it's used for a short time and that you then taper off it slowly but that's not necessary. I'm probably using it for two or three days a fortnight on localised patches of scale. As to shampoo I've heard good things about ones containing tea tree or hemp but everyone's different. For moisturising I use Cetraben three times a day on hands and feet. Also wash with it. Occasionally if I get a thick plaque I'll use Epimax ointment which does a good job of softening it and lifting it off gently. Because I'm mostly dealing with hand and foot psoriasis I apply moisturizer and then wear gloves and socks. Putting ointment on at night seems to work well. Sunlight can definitely improve things - after all Enstillar is just Vitamin D and a steroid combined. Best of luck. There's a lot of trial and error with finding what works for you. Just remember that most things will take a few days at least to have an effect so be systematic about it - try it for a week and keep an eye on your symptoms.. It might be a good idea to keep a diary.

Completely agree with Kiloran. I respond to Enstilar in a similar way with similar use. One technique is to choose a spot (arms or legs), spray with enstillar and wrap with cling film over night. I don't know your personal circumstances, but other lifestyle factors which seem to help according to decent research are: maintaining a healthy weight (adipose tissue releases inflammatory chemicals which just fans the fire of psoriasis), not smoking, not drinking.

Oh bless you, it's very much a learning journey of what works best for you. Good tips from the others. You say you struggle to keep your psoriasis calm when you reduce enstilar?! Do you mean your skin gets worse?! I would have the most dreadful painful rebound reaction whenever I tapered off enstilar, unlike the others, and mine was fiery, burning painful red skin & my psoriasis would spread a lot.... I just want to say what works for one doesn't work for another! I hope someone has some hair advice for you too! Take great care....

I forgot to say I used to use the search field on this site a lot, to find people more similar to my specific issues, e.g type shampoo & it gives you the choice of reading things from the site or from the forum too....

Pulse therapy (as I and kiloran describe), which is more a mega application twice a week which tends to clear us, shouldn't cause rebound. That's more when you use it continuously and stop or even taper. It will come back either way, probably, because you have psoriasis, and the steroid doesn't cure you. The cling film thing is backed by research btw. Dramatically increases absorption to the skin. Steroid creams are only a short term treatment sadly, psoriasis tends to appear in two ways: Random outbreaks that resolve (and faster with steroid) or a progressive chronic flare which most likely will require escalation of treatment down the line (me, sadly). Although there's no one lifestyle measure that will "cure" it, the usual rules of health apply: low weight, moderate exercise, lots and lots of plants and healthy fats, reduced stress, etc. For most severe sufferers, the above alone is unlikely to bring down a massive flare, but you'll certainly have less psoriasis than you would if you were stressed, overweight, binge drinking, smoking, eating fast food etc. Good luck. Its an adjustment having a new long term condition, but forums like this always offer help.

Thank you for your replies! I think I really just need basic information so hearing things about the cling film is helpful. Do you think it would work with Dobovet gel as well? I’ve seen lots of people discuss epimax, is this shop bought or prescribed? I’ve tried all sorts of emollients as part of my day and night time moisturing - E45, epiderm, doublebase and Diprobase, none of them have been particularly amazing. What seems to be the best that people have tried? The hair is just so depressing! Seems impossible to touch. When you say using Enstilar as a shampoo, do you mean during the shower or applying afterwards and not washing it out?

Dovobet and Enstillar shouldn't be used under clingfilm (or any other occlusion) unless requested by a consultant as it's very powerful stuff. If you do try it without approval make sure you only do it for a couple of hours at first. Because I have hand a feet psoriasis I also used manicure/pedicure gloves and socks - easier to keep those in place than using clingfilm in those areas. Emollients are really down to trial and error. In theory the various classes are similar and just vary on the amount of paraffin. Lotion like Cetraben is around 12% whereas Epimax is over 40%. It's also possible to get non-paraffin based emollients which work better for some people. These use oatmeal or castor oil. You definitely can get your GP to prescribe and if they do it's cost effective to get an NHS prepayment certificate as almost certainly you'll be getting more than two prescriptions a month. There's a NICE guideline on prescription pathways for emollients, if your GP needs convincing. I have Cetraben prescribed and could get Epimax too if needed. I haven't used Enstillar as a shampoo myself but there are instructions for how to do it on the patient safety leaflet. It's pretty oily stuff so I imagine it's apply before shower and rinse through.

Kiloran gives fair advice. Occlusion does increase systemic absorption considerably. HOWEVER - there's a weigh up of "how much of you is covered, how much do you need to apply daily, is trying to clear it with a couple of occlusive methods a week going to long term lower your exposure". As with all advice (both medical and alternative) seek a professional (medic) opinion. Generally, every GP I've encountered is much more worried about steroid exposure than consultants (I've had 3 in a row tell me its fine to apply to large areas of skin, daily and indefinitely because the alternative is active psoriasis which is worse than mild steroid absorption). For what it's worth, I think if you're having to do either daily or twice weekly application for months at a time without clearance then that's a sign that the treatment plan needs to change.

Yeah, there's this general over reaction to topical steroids from GPs and the public, to the point that the British Association of Dermatologists has run educational campaigns to explain they're safe in most areas (just try to avoid flexures, genitals, and the face, particularly around the eyes)

It probably comes, as well, from the poor availability of dermatology services, the financial limitations placed on treatments (systemics vs biologics), and so people end up on steroids with little guidance (they may keep returning to GP, but GP may have never studied dermatology and be unaware of "hacks"), and then are frustrated when it doesn't work, they rebound etc. If it was the gut affected (Crohn's etc.) medicine would jump on it. For psoriasis, there's a sort of "let's just see" attitude. However, I'm biased by my own experience which is that mine just gets worse consistently if not treated aggressively. I have progressed to biologics now, but aside from brief success with my first and second NB-UVB course, nothing has really worked so far (which is why occlusion therapy amazed me as I'd long since given up on topicals)