@Sharon and rapture. I started using Estilar about 18 months ago. It worked but I think I got excited and went overboard with it, slapping it on twice a day. I got rid of the P but really destroyed my skin so be careful with it Sharon...only once a day and no more than two weeks before reducing it significantly. I stopped using Estilar 8 weeks ago when I went on the blueberries. As for continuing the blueberries. My 'cunning plan' is to try to find a balance between the berries and the Estilar, increasing and decreasing both to see what happens.
Posted Mon 24 Aug 2020 17.37 by SharonG
@ Pladecalvo & rapture
Will do thanks - maybe it's the combination of both?
Something is working as mine has eased up but do think it could be the cooler weather here too. Nothing ventured nothing gained - willing to try anything before having to take the medication.
I will be careful :) My prescription is coming via Echo so maybe a couple of days. I will post once I have tried it. I think I am getting excited for it now Lol
Cheers
Posted Wed 26 Aug 2020 18.39 by SharonG
@Pladecalvo rapture83
So the Enstilar has arrived :) But.........................I read the side effects and it says:
Enstilar® is contraindicated in erythrodermic and pustular psoriasis. Due to the content of calcipotriol, Enstilar® is contraindicated in patients with known disorders of calcium metabolism.
Mine is Plantar Pustular Psoriasis on my feet only :(
But the dermatologist said I could use it - any thoughts?
I think I will start another thread - don't want to get into trouble here on the BB forum.
Thanks in advance.
Yeah sorry BB guys, last post on this....
Sharon don’t worry, just use it but don’t go crazy on it, just use it once a day (I put it on in the morning after my outdoor run / shower) and that’s me for the day, repeat that for a week and you’ll start seeing changes then after that use it maybe twice a week, it’ll go away then you can just use it when you see a small patch coming back, that’s what I do, cheers
Hi everyone,
I notice this thread has not had a reply in a while, although the discussion on Enstilar prompted me to respond with my experience (as with the experience of many others).
Enstilar is a wonder and works so much better than Daivobet (I think it's called Dovobet in the UK). However, it is only treating psoriasis at surface level. Once you start on Enstilar, your body will become so reliant on the steroid it will be almost impossible to get off when your skin is clear. On top of that, it causes your skin to thin which cuts easily and bruises even easier (similar to the analogy used above about it being similar to a butterflies wings). Skin thinning is irreversible. Using it once/twice a week in an attempt for the skin to 'recover' is false and misleading. Your skin will not recover and it is not for long term use. Enstilar is also only meant to be used on <30% of the body's surface and many GPs/Dermatologists neglect this and advise patients that it's fine to use on greater than 30% of the body's surface area.
No matter what you do to stop the 'rebound effect' nothing will work. On one hand your skin may be clear. However, on the other hand you are causing irreversible damage to the skin and setting yourself up for long term use when this is not what Enstilar is intended for.
For me personally, I used Enstilar at the start of the year once a day for roughly 4 weeks on less than <30% of the body's surface. I gradually cut this down over a period of another 4 weeks as advised by my derm so as to not stop cold turkey. My skin was cleared and remained clear for approx. 2-3 weeks and the psoriasis returned with a vengeance, with spots and plaques appearing in places I never had psoriasis before. There was no way to control the flare up and nothing worked. My derm advised to use Enstilar again but I was against this. It has now been 6 months and I have only just seen myself get on top of the flare up. There have been many others that have also had a similar experience.
I don't want to be spreading negativity because it does work wonders but I wish I had never used it.
Posted Mon 28 Sep 2020 13.41 by Pladecalvo (edited Mon 28 Sep 2020 13.42 by Pladecalvo)
@GfromAus
I used Estilar every day for two weeks and as I said above, my skin was like butterfly wings. The slightest knock would cause a huge bruise and the slightest scratch ripped the skin. I disagree with you regarding the skin not recovering. Once my psoriasis was almost gone from using Estilar, I reduced the use to once a week and now I don't appear to have any serious problem with bruising or tearing. Yes, it still happens of course but I think that now, the skin is nowhere near as delicate as it was. It requires a really hard knock to get a bruise now. Using it once a week appears to be keeping the PS away to the extent that I'm going to try using it just once every two weeks. BTW. There is a thread dedicated to Estilar here.
https://www.psoriasis-association.org.uk/forums/topic.aspx?ID=3617
Hi everyone, I randomly found this page and interested to see how my body reacts to this blueberries cure. I recently started on Sunday. I have psoriasis on my face, eye lid, eyebrows and scalp. Currently on day 3. I intake 40 blueberries a day. Since my blueberries are small, I intake a lot more. Wish me luck...Last week, I started the psolace program for psoriasis which is detoxing the body by taking 3 powders in the morning, capsules when I eat lunch and dinner. Following a very strict no gluten, night shades, diary, process food, etc. I miss having junk food, candy, chocolate, etc. I hope this blueberries cure works. I notice some people on here are eating bad while on the blueberries cure and there skin is still cure from psoriasis
Posted Tue 6 Oct 2020 23.00 by Pladecalvo
@g3. Good luck with the blueberries. They didn't work for me but everyone's different and there are plenty of folks here that have had success. I tried about 200 grams a day for about 8 or 9 weeks and if anything my psoriasis got worse. Perhaps I was allergic to them. I'm back on Estilar cream once a week and I'm as good as clear. Few small spot but no redness, no flaking and no itching. I found my scalp cleared with Betnovate solution. Let us know how you get on with the blueberries. Hope they work for you.
Posted Wed 7 Oct 2020 08.35 by SharonG
@g3
Welcome :)
I too am still having BB - my PPP seems to be ok at the moment after an awful flare up over the summer - it calmed down when the cooler weather arrived (I am in the UK) So far so good - just not sure if it's the BB's though - good at the moment and all I am using is Avon hand cream and any mosturiser that soaks in! I like the BB's so I will continue - I eat about 10 per day - I also use dermovate about twice a week - I have it on my feet - I do have Enstilar (@Pladecalvo) but have not tried it yet as I am coping ok :)
Hope the BB's help :)
Hi all, been a while since I've been on so wanted to just give you an update, it's not all good news in terms of BB's or Enstillar Foam but getting slightly better!
So first of all it's been about 6-7 months of eating around 10-20 BB's per day except a Sat & Sun and I have not seen one bit of improvement in any of my P, maybe it's just not working for me or doesn't work as well with Guttate P? I'll continue to eat them, not in hope that it will cure my P as I am beyond hoping for that now but just because I like eating them as a snack.
Enstillar - So after all my praise for this miracle foam I thought I should let you know about the rebound I had from it when I reduced my usage. I was praising this foam when I first started using it, it was hard not to as it basically cleared my P, it was a massive weight off my shoulders being able to wear T-shirts and Shorts without the worry of people seeing loads of tiny red spots!! I stopped using it every other day to once a week (as I could see my skin getting damaged plus it's colder now in the UK so no T-Shirts & Shorts) and sadly the red spots came back and not only that I had the rebound effect and more new spots appeared all over my legs and arms. I used enstilar years ago and all I had was one large P patch on my thigh, Enstilar cleared that but months later I came out in more tiny spots and I think this is what caused my P to get to that stage, I never thought of that at the time when I last used Enstilar, I never researched it, I just took it as my doctor gave me it and when I seen results I just assumed I was clear and also due to the fact the rebound was months later but this time it was almost instantly, it's not hundreds of new spots but it's certainly a good few more than I had before so with what happened last time and now this time it's obv not good for me in the long run so I have stopped using it. Anyway as I say I have stopped using it now and I'm just having 2 salt baths per week, using a prescribed moisturiser and using chinese herbal cream twice a week on each spot which is a tireless task as I have so many spots but this seems to have calmed things down a bit with the new spots that arrived, the spots are still there but kinda pinkish so I'll just continue with this for a bit. The chinese herbal cream I use says it's natural but I'm sure it'll be a steroid, I've used it for years on my face and chest and it ALWAYS removes the spots/rash so I've always just used it as anything my doctor has gave me has never worked, it tends to happen when I drink alcohol at the weekend, not every weekend tho!
Apologies for spamming the BB with Enstillar chat again but I felt it was important to let people know as I was showering it with praise not so long ago especially to @Sharon who now has it from her doctor, I just didn't want things getting worse for you after me telling you to use it. It DOES however work but it's just a short fix for some, like putting a plaster over a deep wound, for some people it can cure them with no effects but others like me you can easily have a rebound effect which only makes things worse down the line, this is just a heads for people who are planning to use it.
Lastly from me, people who do a complete detox diet to cure/keep their P under control, I salute you all, it sounds like a horrible way to live your life with no pleasures, I couldn't do it, my view is now starting to go the way of that you only have one life, so you may as well enjoy it with P or without, it is what it is! I'm sure I'll come across something some day that will cure me without any side effects, that's what I believe anyway.
P.S - That was not a dig at the detox people, I admire you, I just couldn't do it myself, I'm too weak, I love my weekend beers and pizza haha!
Good luck people!
Posted Wed 7 Oct 2020 10.37 by SharonG
@rapture83
Aww thanks for all of that - I totally understand and thank you for your input. I am like you -not sure the BB's are doing the trick - but now I like them too :)
As my 'PPP' is on my feet I am very careful about any steroid ointment/cream and FOAM - this is why I have not yet tried the Enstilar - if? and I know it's really a when rather than an if - my 'PPP' flares as it has this summer then I will give Enstilar a try but............I will take good care thanks to you and others sharing your experiences - I will keep popping by here to see how everyone is doing - like I say I am managing mine 'for now' but over the summer I found it so painful to walk even :( as the skin was cracking splitting and bleeding - the cycle was relentless as soon as I thought it was healing BANG another part would start!! Grim grim grim - just for now I am enjoying being able to just 'walk' without pain - Lockdown was easy for me as I didn't want to go anywhere anyway!! :(
So - everyone look after your 'P' as best you can but above all 'Stay Safe' and live not a little live a LOT - life is too short isn't it?
Good Luck everyone with BB's - the antioxidants contained in them really can't be a bad thing unless you really don't like them.
Happy Autumn and Hello cooler weather - I have so missed you :) x
Posted Wed 14 Oct 2020 08.41 by AdamB
Hi all, after being told I have psorias a couple of months ago, I have thankfully found this site and this particular thread.
I was initially put on to Enstillar but after each 10 days of trying it my skin was angrier than ever, so I'm now on dermovate but hopefully more importantly I have just started on the blueberries each day and I'm also now off to buy some Lush Dream Cream which was recommended on here.
One question, do you think frozen supermarket berries are good enough or do I need to source something different and if so what do you think is best? At this point I am willing to try just about anything?
Thanks
Posted Wed 14 Oct 2020 08.56 by SharonG
Welcome @AdamB
Hi
I would say NO to frozen!! They are not nice Lol But they are handy - I think they both have the same goodness but I couldn't eat them - personal choice? I have about 10 per day - that's all. I don't know if they are working as my PPP is quite good at them moment - it was awful over the summer so I am putting it down to the fact cooler is best for me - it is all trial and error I feel.
If you find something that soothes or helps then go with it
I use dermovate when mine flares - I have Enstillar but it has calmed down so much all I am doing is 'creaming up' with anything that soaks in - emollients (vaseline etc) seem to just sit on the surface - so anything that soaks in works for me. There are LOADS to try.
Good luck - enjoy the blueberries - they are good for you anyway.
Posted Wed 14 Oct 2020 09.16 by AdamB
Hi Sharon
Thanks for the response, It's nice that there is a bit of community here. Up to now if I showed my rashes to anyone I just get looks of some sympathy but frankly, mainly horror.
I'll keep on with frozen to begin with as I just bought two bags of the stuff - I think I might grow to like them!
Posted Wed 14 Oct 2020 10.00 by SharonG
Hi AdamB
Your are welcome - most people will reply - this forum is really good if you have time to browse :) Lots of lovely people all suffering the same :(
I totally understand how you feel about showing people - some folk are a little ignorant to be honest - but...................remember.............that's their problem not yours ;)
All blueberries help (I think?) so stick with them and have the fresh when you can get them - I have the dried ones too - I prefer them to frozen when I can't get fresh. They are a bit sweet though a bit like currants. Like I say I am not sure if it's the blueberries or the cooler weather but either way it is better than the medication that I was offered (Acitretin or methotrexate which may work for some?! - I didn't even want to try it! Horrific side effects)
Good luck - go with what works for you and I hope you get some relief soon :) But most of all 'Stay Safe'
Keep coming back there is always someone who finds something that helps - and it's good to chat to folk who understand too. :)
Posted Wed 14 Oct 2020 16.06 by Pladecalvo
@AdamB
Hello Adam. 10 days seem a bit long for applying Estilar. Is that what was recommended for you?
Posted Wed 14 Oct 2020 17.53 by AdamB
I was given 4 big bottles of the stuff and was told to use it for up to 6 weeks..
I presume that's not good,
As it happens the GP who gave me prescription has just retired so I can't go and ask him.
One other question, I am seeing this thread with the oldest post first, is there anyway of changing that? Thanks
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