Posted Sat 7 Jan 2017 10.28 by Cambrinus Sporadic scale psoriasis
Helen T. is absolutely right, except that you can, if you are really suffering long term or seriously, insist on seeing a consultant.
I am in the middle of a course of Acitretin, but was prescribed Enstilar just once, before my location (Leics.) meant that it could not be prescribed; it is, supposedly, under review and the hold up may be due to copyright restrictions.
Posted Sun 8 Jan 2017 18.05 by Peter W Plaque psoriasis (on and off) since mid 1970s
Hi Cambrinus, It won't be about copyright (or even patent) restrictions. It will be about money, or at least the perception of saving money. I contacted the Psoriasis Association about this unevenness of prescribing, and they were going to raise it as an issue.
1Posted Sun 8 Jan 2017 18.26 by Cambrinus Sporadic scale psoriasis
Patent; the word escaped me at the time. Thanks, Peter W.
However, can it be about money, purely and simply, if Enstilar hardly differs in price from Dovobet?
Posted Sun 8 Jan 2017 19.55 by Vivgreen80 (edited Sun 8 Jan 2017 19.59 by Vivgreen80)
Hi,
Quick update. I was prescribed enstilar for 4 weeks, it was amazing. When the 4 weeks was up I was told to take a break. Within 2 weeks my skin was worse than it was pre enstilar.
I'm now having phototherapy, due to me being pale and a red head I started at 15 seconds so it may take some time.
I've started up the enstilar along with phototherapy. Consultant said to use enstilar every day for first 2 weeks of phototherapy, Then drop down to every other day, then twice a week. Hopefully by the end of 6 weeks I should be clear again.
BUT then what? This frustrates me. I asked if it was possible to stay at phototherapy maybe once a week as a maintenance dose but they won't do it. (they do for eczema, not for psoriasis)
So I feel like I'm going through all this for nothing as I know the minute phototherapy is over and I'm weaned off steroids that it will break out again and I'll be back exactly where i started :/
The reluctance to prescribe is purely down to money I feel,people keep saying the price is the same as dovabet but personally a can of enstilar will last me a week using it everyday however dovabet ointment would last about 2 1/2 --- 3 weeks.At least double the price.
Posted Mon 9 Jan 2017 08.53 by Peter W Plaque psoriasis (on and off) since mid 1970s
Hi "Awaywithyou",
It's interesting what you say about the cost. Technically, I think the price of Dovobet and Enstilar is the same (on a £ per mass of active ingredient):
This is Dovobet: http://www.mims.co.uk/Drugs/skin/psoriasis-seborrhoea-ichthyosis/dovobet
This is Enstilar: http://www.mims.co.uk/drugs/skin/psoriasis-seborrhoea-ichthyosis/enstilar
They are both about £40 for 60g, at the same concentration of actives.
However, I do agree with you about how long each product lasts (it's my experience as well). I wonder whether Enstilar runs out more quickly because people actually use it! Dovobet ointment is such horrible sticky stuff to use, whereas Enstilar is much more "user-friendly".
N.B. If that effect is true, it's not the (only) reason that Enstilar is better, though, as the clinical trial for Enstilar vs. Dovobet controlled for that, but it might be an additional factor why people seems to have a lot of success with it. i.e. they actually use it.
Posted Mon 9 Jan 2017 11.37 by gingermonkey For several years...drives me mad but won't bring me down.
Hello, I've been using Enstilar for two 4 week periods. I've posted before about the effects. First few weeks saw dramatic shifting of patches and I now just have pale marks where the patches were. Whilst using it I've had some new small patches emerge that just don't respond to Enstilar at all which is really annoying given how effective it has been on other patches. Anyone any thoughts as to why? I don't think that you can build a resistance to this?
Posted Mon 9 Jan 2017 15.10 by Awaywithyou
Hello Peter.W
I have been thinking exactly the same regarding the use of dovobet or lack of it ,however I have had prolonged periods using db everyday in the past and there is no doubt it takes longer to see any progress and plaques return a lot quicker after I slow down the treatment.
Posted Mon 9 Jan 2017 17.09 by Helen T
Hi Peter
Totally agree. Dovobet is so horrible to apply I found I skipped using it especially when in a hurry. It also left greasy marks on bed linen, clothes and furniture. I don't think I used it as frequently as I should have so hence it lasting longer!
1Posted Fri 13 Jan 2017 21.55 by michelle373 I have had psoriasis for 24 years.
I've had psoriasis for 27 years and started using Enstilar last November Dr didn't want to give it to me it was a battle but I won I came away with 5! I told him how depressed I was getting and the unbearable itching was driving me mad.Best thing I've used and Ive tried a lot of treatments.Im almost clear and the itching has completely gone.I don't use it every day as I know steroids are not good for the skin.Its worth a try and don't take no for answer after all they don't have to live with this horrible condition.I feel so much better so much so I'm off to a spa day tomorrow something I would never of done before.Give it a try it just might help you too!
Posted Fri 13 Jan 2017 22.10 by Peter W Plaque psoriasis (on and off) since mid 1970s
Glad it's working for you, Michelle. :-)
Posted Thu 19 Jan 2017 03.28 by Lscott
Had psoriasis for33 years tried every cream ointment soap Chinese herbs been to hospital on many occasions for light treatment which works brilliantly for me but still returns after a few month so started using enstilar last week after 3 or 4 goes it's nearly cleared my psoriasis after one go the backs of my hands were smooth as a babies bum and they never clear up so this is the best thing since sliced bread to me hope it works as well on everybody else
Posted Sun 22 Jan 2017 12.03 by Lizzie
i have been using Enstilar for about 4 weeks and it is definitely more effective than most other topical treatments. When I need to take the break I am not sure what to do! I was using a beeswax cream that was very good but not mixed with Enstilar.
I assume everyone moisturises when not using Enstilar? I don't know what to use. any recommendations?
also has anyone used the home light treatments that are available? I am tempted as it is difficult to go to the hospital 3 times a week when working!
This weekend I had a bath (rather than shower) every evening using a large amount of dead sea salt and a bfew drops of Lavender oil and found that this had a really good effect so I will try bathing every night to see if it helps.
Posted Sun 22 Jan 2017 15.03 by Peter W Plaque psoriasis (on and off) since mid 1970s
Hi Lizzie,
Yes, always moisturise with and without Enstilar. Diprobase, and Zerobase are both good moisturisers, and not too messy. Work with Enstilar as well - just let the Enstilar "soak in" for 5-10 mins before using.
Another (better) moisturiser is Hydromol. It looks a bit like lard, and is quite messy (leaves skin a bit oily), but really good. I've used it under cotton gloves at night when my hands are really dry - but beware of risk of catching fire - no naked flames!
There's also a Hydromol bath emollient that you add to the water when bathing. I would suspect it's better than sea salt+lavender oil, but I've not tried the latter.
Hope that helps.
Posted Sun 22 Jan 2017 16.49 by Lizzie
thank you this is really helpful I will give this a go. try the saltwater bath as I always love it.
Peter W thank you for your advice about the Hydromol, I have only been using it for 3 days and my skins feels and looks so much better! I used the emollient in the shower and the moisturiser afterwards. I will try the emollient in the bath with the dead sea salt and see how i go.
Lizzie
Posted Thu 9 Feb 2017 19.49 by Cg17
Hello! I'm into the 3rd week of enstilar (and I've had the most amazing results) for those who have used this - am I to stop using it completely after 4 weeks are up or do I have to wean myself off? And also to those who have had success with the foam did PS come back once stopped using it?
Posted Fri 10 Feb 2017 16.24 by Toodlesoodles
Sarah, I've not had any side effects that you've described and can't see how any of them would be related to the Enstilar (but hey, I'm no expert) but you are only supposed to use the Enstilar once a day.
Cg17, just like with any other steroid treatment, the psoriasis in most cases will come back after you stop using it. I too though am confused as to what to do after the 4 weeks is up. If you are to just stop using it or even wean yourself off it and the psoriasis comes right back, what's the point? I was first prescribed Enstilar in November. Used it for the 4 weeks and saw great results and then got a second can (wasn't as easy as the first and I'm unsure whether I'll be able to get a 3rd) which I was using every 2 or 3 days. I stopped using it altogether for almost 2 weeks and now with the psoriasis coming back I've started using it again since yesterday.
Really not sure what's expected of us because, again, if the psoriasis comes right back when you stop using then what's the point at all?
Posted Fri 10 Feb 2017 16.58 by Lizzie
I met the consultant dermatologist who said that after the 4 weeks you can use for another 4 week - however you should only use on the areas of the body affected by the ps plaques. he recommended that if it comes back you use an alternative that has also worked previously. In my case I will try Exorex. the consultant was pleased with the results though.
I have had really good results but will be coming off the treatment this week. In the meantime i have had irritation on my hands - red and sore and i was advised that this might be because the Vitamin D thing in it cab=n do that. I will not try to solve that with more Enstilar. I have also noticed that I may have scalp ps - something I have not had in many many years - so not good.
Posted Fri 10 Feb 2017 17.40 by Peter W Plaque psoriasis (on and off) since mid 1970s
Hi Lizzie,
Great to hear that the Hydromol was giving you some relief. it's messy, but good when things are bad!
Interesting to hear what your consultant said. I've just finished 10 weeks phototherapy, which has virtually cleared everything (whoop, whoop!), and am using the occasional blast of Enstilar on the few tiny plaques left.
P.
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Posted Sat 7 Jan 2017 10.28 by Cambrinus