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Psoriasis

Sykk

Hey all,

So I have been to around 4 different doctors over a skin condition I've had for around a year. 2 didn't know and 2 said I have psoriasis. It's very annoying, looks bad, and has a chance of spreading...

I have it on some parts of my head and the doctor told me there is no cure for it, it's only containable.

I have done some looking up on the web about cures, and some people say it's not cureable, some say it is. I have yet to go to a dermatolisist (I've one booked) or a chinese herbalist.

Does anyone else have this skin problem? If so what are you taking for it? And does anyone know if it's actually cureable or not.

Thanks in advance.

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Gael23

brevity wrote: »

I'm not sure. I don't remember using on my body, I think it was something that I put on my scalp. I can't imagine there would be much of a problem using it elsewhere though.

I was given it by a consultant but I'm going to ask the pharmacist where I got it and if he's not sure then i'll go to see my GP.

Gael23

Im not getting great results with the coal tar. Does it take a while to work? I know theres going to be a rebound from withdrawal of Dovobet but I thought the coal tar would be working by now

Busi_Girl08

I've had my biggest breakthrough with the BioOil. The plaques on my stomach chest and boobs have gone waaaaay down. Redness is nearly gone, now it's just the pigmentation I have to deal with.

I've also started yoga and am exercising more which is helping with stress and anxiety.

huskerdu

ryanf1 wrote: »

Im not getting great results with the coal tar. Does it take a while to work? I know theres going to be a rebound from withdrawal of Dovobet but I thought the coal tar would be working by now

I found coal tar very slow but effective in the long run, if you want to avoid steroids. Its definitely not an quick fix.

brevity

ryanf1 wrote: »

Im not getting great results with the coal tar. Does it take a while to work? I know theres going to be a rebound from withdrawal of Dovobet but I thought the coal tar would be working by now

For me, all the coal tar does is help with the itching, which is great. It never really clears it up though.

Gael23

brevity wrote: »

For me, all the coal tar does is help with the itching, which is great. It never really clears it up though.

I am beginning to notice that, I haven't taken an antihistamine all week. In that case should I still use the Dovobet a few times a week?

brevity

ryanf1 wrote: »

I am beginning to notice that, I haven't taken an antihistamine all week. In that case should I still use the Dovobet a few times a week?

That's what I used to do alright. Chop and change between the two. Use some good moisturiser as well.

As I posted recently I had a really bad flare up so I've cut a lot out of my diet. Started drinking a lot of vegetables and fruits juiced up.
I use parafin gel and wrap my legs in cling film overnight. Seems to keep them moisturised. I've also stared using Dermalex, an over the counter product. This setup is working for me at the moment...not clearing anything mind, but the itching and soreness has gone right down.

Tilly32

Hi,
Just been doing a bit of googling on Psoriasis (nothing new there! ) ..... has anyone ever tried to cure their psoriasis through diet? Some sites say gluten free , some dairy free, .... i would try if i knew which to go for, or knew of someone who had seen positive results.
I'm not a bad eater but i do love my carbs......& wine!
Any thoughts?

brevity

Tilly32 wrote: »

Hi,
Just been doing a bit of googling on Psoriasis (nothing new there! ) ..... has anyone ever tried to cure their psoriasis through diet? Some sites say gluten free , some dairy free, .... i would try if i knew which to go for, or knew of someone who had seen positive results.
I'm not a bad eater but i do love my carbs......& wine!
Any thoughts?

That's what I'm working on at the moment. Have cut out sugar, gluten, pork most alcohol and it's helped with the itching and they soreness.

I've also started making juices (apples, cucumber, celery, brazil nuts, avocado all blended together) in an attempt to so sort it out.

I'm convinced this is an "inside" problem and no amount of lotions and potions is going to fix it properly.

rubadub

ryanf1 wrote: »

Im not getting great results with the coal tar. Does it take a while to work?

I sometimes use coal tar before my UVB light. It is said to be effective without the need to use UVB until you get to the light sunburning stage. There is a thing called the "Goeckerman regimen" which uses both.

I think there is still a world shortage of coal tar.

Tilly32 wrote: »

Just been doing a bit of googling on Psoriasis (nothing new there! ) ..... has anyone ever tried to cure their psoriasis through diet?

I gave up foods in the nightshade family. The main ones being regular potatoes (not sweet potatoes), tomatoes in all forms (lots of off the shelf sauce has tomato in it, currys, BBQ etc). Chillis are in the family but since they are so potent I am not eating a lot of them. Bell peppers too, which includes paprika.

I had given them up at the start of the year. I ate a pizza a few weeks ago and had a bad outbreak, but I was drinking a lot too and dehydrated so it might have been it, but I do believe it did have a negative effect. Alcohol is certainly a big factor, and the deyhdration that goes with it.

Gael23

rubadub wrote: »

I sometimes use coal tar before my UVB light. It is said to be effective without the need to use UVB until you get to the light sunburning stage. There is a thing called the "Goeckerman regimen" which uses both.

I think there is still a world shortage of coal tar.
.

I'm on a waiting list for PUVA and using this in the mean time.

brevity wrote: »

That's what I used to do alright. Chop and change between the two. Use some good moisturiser as well.

As I posted recently I had a really bad flare up so I've cut a lot out of my diet. Started drinking a lot of vegetables and fruits juiced up.
I use parafin gel and wrap my legs in cling film overnight. Seems to keep them moisturised. I've also stared using Dermalex, an over the counter product. This setup is working for me at the moment...not clearing anything mind, but the itching and soreness has gone right down.

I've had a few days where I hadn't time to shower in the morning so used the Dovobet those nights. Someone mentioned Dermlex quite recently here, I don't have much belief in those things myself but I suppose anything is worth trying. In my experience they are all very expensive and don't help very much.

colly10

I was recently diagnosed with psoriasis and i started dovabet once a day a month ago. The symtoms disappeared after around 10 days in 2 of the 3 areas.

I dont want to continue using it in those areas when the symtoms have disappeared so after another week of using it in those areas i cut it to every second day and it feels fine. So now it's every second day on 2 areas and every day on one area.

I was wondering when it would be ok to switch to every third day, would now normally be ok or too soon, i dont want to rush cause it has a steroid but im also afraid to over do treatment on an area that shows no symtoms?

Gael23

colly10 wrote: »

I was recently diagnosed with psoriasis and i started dovabet once a day a month ago. The symtoms disappeared after around 10 days in 2 of the 3 areas.

I dont want to continue using it in those areas when the symtoms have disappeared so after another week of using it in those areas i cut it to every second day and it feels fine. So now it's every second day on 2 areas and every day on one area.

I was wondering when it would be ok to switch to every third day, would now normally be ok or too soon, i dont want to rush cause it has a steroid but im also afraid to over do treatment on an area that shows no symtoms?

What you've done so far is fine. I would wait until you feel its as clear as its going to get before reducing further. Its one of those things where you know your own body and when you feel it appears clear or isn't clearing and more than its time to begin a maintenance phase.

Call Me Jimmy

I ruined my skin again the other day but yesterday used coconut oil on it. Oddly it feels a bit stingy (cause I aggravated it), the patches where it's present are redder than usual, but oddly it looks more 'contained' to those and they look a bit smaller. Directly around those areas looks better.

Anyone any experience with coconut oil?

Gael23

Call Me Jimmy wrote: »

Anyone any experience with coconut oil?

The Dermatologist I was with a few weeks ago put me on an ointment called Cocois. The main ingredient is coal tar but amongst other things it contains Coconut oil. No idea how much though. I cant say I find it great either but its still early days.
Its actually a scalp ointment but he gave it to me for my body.

wonga77

I used cocois long time ago, smell was awful and i never took to it if im honest

Gael23

wonga77 wrote: »

I used cocois long time ago, smell was awful and i never took to it if im honest

Im not overjoyed with it either but its only until I start PUVA therapy. The smell isn't nice put I can put up with it.

Amazingfun

http://www.irishhealth.com/article.html?id=24146

Effects of psoriasis 'underestimated'

[Posted: Thu 30/10/2014 by Deborah Condon www.irishhealth.com]

The skin condition psoriasis can have a major impact on the lives of those affected, however most healthcare professionals, including dermatologists, underestimate the effects on their patients, a leading doctor has said.

According to Prof Brian Kirby, a consultant dermatologist at St Vincent's University Hospital in Dublin, psoriasis ‘has an impact on sufferers that is frequently underestimated or unrecognised'.

Gael23

Amazingfun wrote: »

http://www.irishhealth.com/article.html?id=24146

I was with him 2 weeks ago and he is right. My treatment was just treating the symptoms but he's going to try and confront it head on with light therapy.
He's brilliant but theres a wait to see him, even privately, and he's very expensive. Having said that he listens and gives you all the time you need.

Mountainsandh

Hope your therapy goes well ryanf1, it is so great to clear even partially, but if you can finish the treatment imagine, you could be all clear ! Hope yours stays away then, you seem a lot more assiduous than I in your daily care routines, so you're in with a good chance of long term progress.

Mountainsandh

You know what's interesting ? Now that my hands are a million miles better, I gloat inside about it all day, I love feeling the smooth skin, looking at my veins ... I know it's silly, but after several years of wearing psoriasis gloves it's a big deal for me.
Well, what's interesting is that in my job, where I meet lots of the same people daily (say, minimum 60/70 in close quarters), nobody has noticed. They all noticed when my hands were red and sore, usually people think I got seriously burnt, but it goes to show how short people memory is, that now my hands are nearly normal, not one has asked about them (they're mostly kids so they do ask

)

Call Me Jimmy

Very happy for you Mountain: me ---->

I can't remember wat you said has helped yours get better, juicing was it? And what in terms of skincare products (or lack thereof)

Gael23

Mountainsandh wrote: »

Hope your therapy goes well ryanf1, it is so great to clear even partially, but if you can finish the treatment imagine, you could be all clear ! Hope yours stays away then, you seem a lot more assiduous than I in your daily care routines, so you're in with a good chance of long term progress.

I had a GP that was fantastic to me and he got me to tackle it head on and stop flare ups from ever happening rather than do what I did for years which was basically fight fire with Dovobet when I got a flare. Im not with him any more, won't get into that but I mentioned it before, was a bit of a messy situation. Despite that I still use what he taught me every day along with recent changes made by Prof Kirby.
I agree with what you said about the smoothness of your hands, but I feel like that about my face. Its now soft and smooth with no red, lumpy patches on it.

bucketybuck

ryanf1 wrote: »

he got me to tackle it head on and stop flare ups from ever happening

Any recommendations on how to do that?

Gael23

bucketybuck wrote: »

Any recommendations on how to do that?

During a flare up you apply Dovobet daily but when things are under control you still apply it once or twice a week to try and keep it that way, whereas most people will just stop when its calm. I was on Dovonex for a year on the days where I wasn't using Dovobet but that stopped working for me. Im off Dovobet for a trial now too so we'll see how that goes.

NEDDURC

ryanf1 wrote: »

I had a GP that was fantastic to me and he got me to tackle it head on and stop flare ups from ever happening rather than do what I did for years which was basically fight fire with Dovobet when I got a flare. Im not with him any more, won't get into that but I mentioned it before, was a bit of a messy situation. Despite that I still use what he taught me every day along with recent changes made by Prof Kirby.
I agree with what you said about the smoothness of your hands, but I feel like that about my face. Its now soft and smooth with no red, lumpy patches on it.

Sorry, what do you use on your face now? How did you get the red away. That's my main issue now.

Gael23

NEDDURC wrote: »

Sorry, what do you use on your face now? How did you get the red away. That's my main issue now.

I still use Protopic on my face. I usually use it twice a week but the dermatologist has written on my prescription to use daily so need to check that with my GP.
Don't expect the redness to clear overnight, it can take a few weeks. The protopic clears the raised lumpy patches first and works a little slower on the redness but it will work eventually.

NEDDURC

ryanf1 wrote: »

I still use Protopic on my face. I usually use it twice a week but the dermatologist has written on my prescription to use daily so need to check that with my GP.
Don't expect the redness to clear overnight, it can take a few weeks. The protopic clears the raised lumpy patches first and works a little slower on the redness but it will work eventually.

Thanks for the reply. I've never tried Protopic. Is it a steriod cream? Is it only prescription?

I went to Prof Kirby too about 2 years ago. Was also sent for light treatment. Which did help but the psoriasis has gadually returned and more to my face than anything. Where I didn't have many issues with my face before.

I was told to use a weak steriod on my face (can't think of name now), but I actually stopped recently as I find it only works for a short period and then the psoriasis returns and often worse. I've been trying to just manage it with moisturisers again recently.
The most useful I've found are La Roche-Posay - Cicaplast Baume B5 - seems to take the redness away but can leave the skin dry. Therefore, I've tried Dermalogica's calming balm stuff which is ok or Eucerin sometimes.

Anyone else recommend a good face cream or moistuiriser that works?

Gael23

NEDDURC wrote: »

Thanks for the reply. I've never tried Protopic. Is it a steriod cream? Is it only prescription?

I went to Prof Kirby too about 2 years ago. Was also sent for light treatment. Which did help but the psoriasis has gadually returned and more to my face than anything. Where I didn't have many issues with my face before.

I was told to use a weak steriod on my face (can't think of name now), but I actually stopped recently as I find it only works for a short period and then the psoriasis returns and often worse. I've been trying to just manage it with moisturisers again recently.
The most useful I've found are La Roche-Posay - Cicaplast Baume B5 - seems to take the redness away but can leave the skin dry. Therefore, I've tried Dermalogica's calming balm stuff which is ok or Eucerin sometimes.

Anyone else recommend a good face cream or moistuiriser that works?

Protopic is prescription only, its an immune suppressant but has no steroid which makes it safe to use it on the face, its an ointment too which I find much easier to use.
I think the cream Prof Kirby gave you may have been Daktacort, green and white box? That can be used on the face but I only use it on genital areas myself. The trick with whatever you use is maintenance because if you stop once your skin appears clear,it will creep back .I use Protopic on my face twice daily during flares ( which hardly ever happen now) then twice a week all the time, no matter how good I am ,to stop it coming back.
When I was with Dr Kirby I didn't know a lot about light treatment but have since done some research. I do think its going to come back eventually as I don't believe anything will ever get me totally clear but maybe its just a case of going back to home after 6 months or so and seeing how things are. Do you remember if you had UVA or UVB?
Ive never heard of that La Roche Posay cream you mention although people swear by their products. Before I started on Protopic, I used E45 cream and la roche posey XY home anti-redness balm but Protopic works way better.

Mountainsandh

Call Me Jimmy wrote: »

Very happy for you Mountain: me ----> I can't remember wat you said has helped yours get better, juicing was it? And what in terms of skincare products (or lack thereof)

Yes, juicing for me, normal fruits, nothing fancy (I get the whole family to drink it and kids spotted/tasted the celery and cucumbers a mile away so it's all apple, oranges, pineapple, etc... now), once daily, or every second day or so.
Don't have a clue how it works, but it does. Arthritis much better too, basically inflammation is down a great bit.

Skincare : I have a Uriage pump bottle of moisturising milk for psoriatic/eczema prone skin, that I bought in France, so at the moment I use that on face, arms, hands.
Other than that, ointments, sometimes organic/herbal types, have also tried all sorts of pharmacist ones. I try to avoid anything with an obvious high alcohol/methyl content, but I do find a lot of very good hand creams with paraffin/keratin.

No medicated creams, only a tiny dab of dovonet/daktacor the very odd time on face, I'm lucky I just get small drops there once in a while, and they come and go. I'm very superstitious about applying anything medicated to the face, I've never been too bad so I really really don't want a big bounce back flare up.

Legs, I do nothing. Sometimes moisturise. Using Dovonet/Dovobet was simply too expensive, and time consuming. I have both bigger patches at times and drops, and to apply 2/3 times a day would simply take ages.

I still have lots of drops on legs, but the thick patches on knees have greatly reduced with the juicing

edit : I meant to say as well, that I have not changed the rest of my diet at all.
I eat bread, pasta, potatoes, tomatoes, anything and everything. So the juicing has worked so far for me without having to give up gluten, sugaR, yeast, nightshades, anything. It's just a top up of something that somehow seems to do the trick for me.
(not vitamins, had done the supplement thing)