Psoriasis

madma

DonFred wrote: »

Just had to share this with psoriasis suffers but Kim Kardashian also suffers!!!! And also LeAnn Rimmes suffers too! It just goes to show they not perfect......

yeah i seen on another forum a video smeone posted of her goin mad and balming her mam for it!

ad liam gallagher to that list.

Mountainsandh

Hey everyone, doing a course of PUVA right now, the course I had done before was the light therapy without medication (UVBs ?) so PUVA new to me.

Just wondering how rigourous were those of you who did it in wearing the sunglasses all day ?

I hate wearing sunglasses, have been wearing them most of the day, but just have to take breaks from them if I'm inside for example (I pull the curtains and no lights). Are computer screens or tellys also harmful UVA wise ? Had 3rd treatment so a good few to go, and don't want to be taking chances either, like the nurse said I'm too young to be getting cataract.

edit : apologies if I posted that in the wrong spot, thought this was a general thread on psoriasis.

twistedsoul

long time psoriasis sufferer here there is an Irish and international groups on facebook for people to chat with il add links belwow peace out :cool:

http://www.facebook.com/groups/223570877662762/ - psoriasis ireland

http://www.facebook.com/groups/2204404890/ psoriasis international

Brightest Star

I'm currently getting UVB treatment for my psoriasis, but if it doesn't work, the dermatologist wants to put me on Humira. I'm reluctant to start on this, though, because he says that even if the psoriasis clears fully, once I start taking it I'll probably have to start taking it for the rest of my life. Any experiences from anyone else who's used Humira? Particularly if you were able to go on it short-term and stop using it but still remain clear?

By the way, in earlier posts on this thread, I was trying out the Pagano diet. Just an update ... my psoriasis got much, much worse on it (but I wouldn't necessarily blame the diet - other factors such as stress were in play at the time.) At the moment, I'm following a Paleo diet rather than the Pagano one. It's definitely much easier to follow (basically high-fat low-carb rather than low-fat low-carb), and I've read a few accounts online of it helping with psoriasis. However I started the diet around the same time as I started the UVB therapy, so while my skin has improved somewhat, it's hard to say if the diet has helped at all.

twistedsoul

hey im on humira nearly 2 years only a few patches here and there its the best treatment i have ever got for p i only still get psoriasis on my face every now and again ive read if you stop taking humira psoriasis will come back gradually but you have to remember psoriasis is a condition like diabetes you have to learn to live with it so lets hope they keep coming up with new treatments :pac:

eilo1

twistedsoul wrote: »

hey im on humira nearly 2 years only a few patches here and there its the best treatment i have ever got for p i only still get psoriasis on my face every now and again ive read if you stop taking humira psoriasis will come back gradually but you have to remember psoriasis is a condition like diabetes you have to learn to live with it so lets hope they keep coming up with new treatments :pac:

Oh are you a diabetic with psoriasis?!!?

twistedsoul

no im not diabetic i was just comparing them as they are both conditions like there is no cure for them yet you can find the right treatment to manage the condition :pac:

Sykk

For anyone who hasn't successfully found something that works for them - I started using a cream called:

Dermovate Ointment 0.05%
Clobetasol Propionate

(Being specific as there's a few different ones)

My psoriasis is almost completely gone. I need to use the cream once a week but it works

-Nigel

SunnyLucy

Hi Nigel,

Is this by prescription or can it be bought over the counter? Also how much did you pay for it?

Thanks!

VW 1

lastresort wrote: »

I'm desperate.



Anyone have any experience of this? Does this actually happen in Ireland? Just how bad would you have to get hospitalised? Because the way my skin is now, I can't see how I wouldn't qualify.

Yep I have been hospitalised with psoriasis. I'm 22 now and originally got it when I was 7. It progressed to a stage where at 8 years old I couldnt move without cracking/bleeding/pain etc and was in hospital for 6 weeks. The treatment I received really helped and made things a whole lot better, but when I got out i still was on steroid creams which could only be applied to affected areas, it took almost an hour a night to apply with lollipop sticks (my mother had the patience of a saint) and then I had to put on full body bandages to stop it spreading to non-affected areas and for protection of the bedsheets! I can still smell that absolutely disgusting tar-pomade I had to sleep with in my hair every night for a year. I dont think that will ever go away!

I remained as an outpatient at Temple Street for a further 4 years after this. The thing I found most effective was UVB treatment received as an outpatient at Beaumount. I go back every 2 years, when it becomes unmanageable with creams, to the doctor to get a referral to the specialist to get reccomended for treatment with UVB light which takes around 6 months to get seen to. After that its 6 months of psoriasis free(ish) bliss until the next round of treatment.

But I would never ever want to go back through that hospitalisation again. Maybe it was so traumatic for me because I was so young but I have only horrible memories of it.

Sykk

SunnyLucy wrote: »

Hi Nigel,

Is this by prescription or can it be bought over the counter? Also how much did you pay for it?

Thanks!

It's prescription only!

I'm not sure what the price is. I get it from my mum who has a monthly prescription, she told me to try it as she has a different skin condition but it done the trick for me

Let me know if it works for you, should you decide to give it a try!

eilo1

Okay Im just gona try and find some positives about psoriasis. So I will confess that I do love picking those really big flakes that I get!

rubadub

eilo1 wrote: »

I do love picking those really big flakes that I get!

same here, I only have it on the scalp really so cannot see them and am always checking them out. Reminds me of peeling strips of sunburn off as a kid.

I have been using coconut oil as a moisturiser lately which is working OK, doesn't go as sticky as veg oil.

Dermovate Ointment 0.05%

she told me to try it as she has a different skin condition but it done the trick for m

That dermovate is very powerful stuff, you should talk to your doctor, esp. if using somebody elses prescription

http://en.wikipedia.org/wiki/Clobetasol_propionate

Clobetasol belongs to US Class I (Europe: class IV) of the corticosteroids, making it one of the most potent available. It comes in shampoo, mousse, ointment and emollient cream presentations. It has very high potency and typically should not be used with occlusive dressings, or for extended continuous use (beyond two weeks)

I think you have to be extra careful of using it on the face as I think it might permanently redden and/or thin skin. I had it for contact dermatitis on my feet, cured them almost overnight, doctor warned me to wash my hands after using it, and not touch my face.

Mountainsandh

A nugget of information I learned off the nurse yesterday at UVA treatment, it was news to me and I've had my psoriasis 20 years : smokers are more likely to get persistent psoriasis on their feet and inside the hands.
I have it on both, and was asking her about the feet since they don't get as much light during treatment, and she asked me if I was a smoker. I quit a year ago, but I guess it's just lingering.

For those thinking quitting might help though, I have to say I was fairly disappointed as regards the psoriasis, I guess I was hoping for a miracle : my hands were entirely covered the last few years, and got very sore in winter time. When I quit smoking (in summer, but hands were still covered), it did really help for 2 weeks, the inflammation went down big time, no smoke to irritate fingers I suppose. But after 2 weeks, inflammation just came and went as usual.

On feet and inside of hand I get little "bubbles" rather than flakes, and these did not receed at all when I quit. Neither did the plaques and guttate on other parts of the body.

PUVA is great though, it's a 120km return trip for me twice a week for a long time, but worth it. Fingers crossed it won't come back too quickly.

madma

anyone know if there re any prescription neeeded creams that you get over the counter in spain as going there soon?

i know stuff like inhalers can be bought but wondering about stuff like silkis, proptopic etc.. anything for the face

Lordofweld

Keep active too. I developed psoriasis on my face and scalp a few years ago and gave up the gym and football out of embarrassment really, Been using creams and shampoo,s for a while which were kinda keeping it at bay, (Remember that psoriasis can only really be controlled not cured) but since i have started back running and gyming i not only feel a lot better my psoriasis has never been as small, Sweating a bit does no harm.

cailineile

To the op re Dermovate, be very very careful, prolonged use will make your skin like paper. I've used it on and off, when my P gets very bad and it does the job for a big event, but come back 3 times as bad, but I do this knowing that will happen


Dermovate has been known to cause excessive hair growth (hypertrichosis).(like other cortisones)

I use it as I know it works but only 5 days at a time, its fairly toxic stuff( I used to actually make it).

Cailineile

eilo1

Right guys, I was back with my doctor yesterday and she prescribed dovobet and cocois. I know one of the side affects of dovobet can be blood sugar swings in diabetics.

So any other diabetics out there that have used this?!

ronan45

Mountainsandh wrote: »

A nugget of information I learned off the nurse yesterday at UVA treatment, it was news to me and I've had my psoriasis 20 years : smokers are more likely to get persistent psoriasis on their feet and inside the hands.
I have it on both, and was asking her about the feet since they don't get as much light during treatment, and she asked me if I was a smoker. I quit a year ago, but I guess it's just lingering.

For those thinking quitting might help though, I have to say I was fairly disappointed as regards the psoriasis, I guess I was hoping for a miracle : my hands were entirely covered the last few years, and got very sore in winter time. When I quit smoking (in summer, but hands were still covered), it did really help for 2 weeks, the inflammation went down big time, no smoke to irritate fingers I suppose. But after 2 weeks, inflammation just came and went as usual.

On feet and inside of hand I get little "bubbles" rather than flakes, and these did not receed at all when I quit. Neither did the plaques and guttate on other parts of the body.

PUVA is great though, it's a 120km return trip for me twice a week for a long time, but worth it. Fingers crossed it won't come back too quickly.

Hey Mountain, How are you getting on with the light treatment, Your a few weeks in now. Hoping your seeing some results now :) Keep us up to date

DonFred

Has anyone tried any new products ie shampoo, lotions etc that you think might work with psoriasis and work trying? Pass on any tips. Cheers.

Brightest Star

DonFred wrote: »

Has anyone tried any new products ie shampoo, lotions etc that you think might work with psoriasis and work trying? Pass on any tips. Cheers.

Betamousse is great for instant results with scalp psoriasis. It just melts it away immediately!

Hydrocortisol ointment does similar for small patches on your face.

Biggest improvement I've gotten was from using Ovells Emulsifying Ointment as soap substitute / moisturiser. Very cheap (otc) and a million times better than silcocks base, aqueous cream, etc. Less smelly too!

I'm currently taking vitamin d3 and milk thistle supplements, along with a multivitamin, and plenty of olive oil and flaxseed. I've also almost completely cut out nightshades, and am doing my best to avoid gluten.

Very hard to know what works, but I do know my psoriasis is better now than it has been in a long time (it was pretty horrific there for a while.) However, while its not really "active" right now, I've been left with heavy scarring/staining all over my body (recently had uvb treatment.) Looks like bruising. Anyone know if this is likely to fade?

mayobumblebee

hey all have had psoriasis from the age of three. i try not to use anything to serious. currently using eurcerin shower gel and shampoo, a bees wax cream and for the scalp i sometimes use cocois. i find its the dry heat of indoors during winter that gets me. although i get it from head to toe the knuckles is a fairly new addition and the nails also as of yet i am going through a good phase but its slowly getting worse like the weather.

anyone find a SAD light of any help. the sunbeds dont do me any favors.

Hippo

I posted on this subject on a similar thread not long ago. I had chronic psoriasis for over 30 years, every conventional treatment bounced off it; years of creams, special shampoos, steroids, all utterly useless. 2 sessions of acupuncture cured it and it has never returned. I'm no advocate of alternative therapies and I remain sceptical about acupuncture's efficacy in any other area, but it worked almost overnight. That was nearly 20 years ago, and I've still no idea how or why it worked.

brightkane

I have to ecco Hippos findings.

I have had Psoriasis and asthma since the age of 7. I am 32 now.

During my teens was covered head to tow, asthma was so bad I needed my own nebuliser.

Friends wife was doing acupuncture and needed some practice, so myself and my mate went for it. This was nealy 3 years ago.

I started off going every 2 weeks, and then going longer and longer. I havent had it in about 5 months now.

The improvement was immediate. I dont honesly know when i last put creams on and my asthma is so good now i dont even carry an inhaler with me any more.

I would say to if you havent tried it, do. It might work it might not, everyones different. I had no faith in it and went as a favour and found it to be fantastic.

Oh and I always use aloe vera on any dry skin. Even the vasaline one, and aloe vera shower gel, always found it fantastic.

fro9etb8j5qsl2

Has anyone tried using dovobet on the scalp or on the little blistery patches on the palms? I got a tube of it today to try and clear the patches under my chest and I'm tempted to try a tiny bit of it on my scalp and hands. I'm already using nizoral shampoo and its bringing some relief but not clearing the problem completely.

Also, can anybody tell me if there is a definite link between damp/mould in the environment and psoriasis? Mine used to be so light it wasn't a problem but since I moved into this damp mouldy old house, it has really flared up Moving next week thank god so hoping it might clear up quickly once I get outta here

Gael23

No I have never put dovobet on my scalp, I use bettamousse for that. It should be fine for the hands though.
I have started to get a few patches on my face and in behind my ears and started to use E45 cream on them and the results are amazing. I will be trying it on some other areas once they are less flared up. I tend to use nothing at all when its under control but im hoping by using this stuff it will be easier to keep under comtrol.

MerryLegs

Sykk wrote: »

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.

Ive had it all my life with 90% of my body covered. Im only 18 and its so hard even when my friends are all going out I didnt want to, covering up, not being able to wear dresses etc..always long sleeves and trousers I tried every cream and herbal care in the books but nothin really worked..my doctor prescribed me steriod creams such as elecon, diprosalic, dovobet, dovonex, which are good than I moved to sunbeds which are great! Then cyclosporin tablets, which were originally used for transplant patients but they noticed patients with psoriasis were clearing up and started prescribing it. Its hard to get and your must be severe as the goverment have to approve it because its not licensed in Europe, this website http://www.dermacinz.com/page11.html is great the first special value pack is great and reviews from people on the spray are calling it a miracle. The shampoo in my opinion is fantastic! Im after finsihing my cyclosporin and I only have it now on my elbows and small spots on my lower legs, although its staring to come back. But hey I'm taking it to the grave right? Unless someone finds a cure, unlikely! But best of luck and I hope i helped

MerryLegs

DonFred wrote: »

Has anyone tried any new products ie shampoo, lotions etc that you think might work with psoriasis and work trying? Pass on any tips. Cheers.

These are fantastic! Honestly i tried EVERYTHING! These are great
http://www.dermacinz.com/page11.html

Will I Amnt

MerryLegs wrote: »

DonFred wrote: »

Has anyone tried any new products ie shampoo, lotions etc that you think might work with psoriasis and work trying? Pass on any tips. Cheers.

These are fantastic! Honestly i tried EVERYTHING! These are great
http://www.dermacinz.com/page11.html

That has got to be the worst designed website I ever had the misfortune to use

Is there any way of paying by any other means than cheque???
They state they accept credit card and paypal but there's no option at checkout.

I clicked on the pay by cheque on the off chance it led to other payment options and now it has placed an order by cheque without the usual confirmation steps most other websites have.

A total mess of a website.
I would still like to try the product but I don't use cheques at all.

LegacyUser

cambo2008 wrote: »

That has got to be the worst designed website I ever had the misfortune to use

Is there any way of paying by any other means than cheque???
They state they accept credit card and paypal but there's no option at checkout.

I clicked on the pay by cheque on the off chance it led to other payment options and now it has placed an order by cheque without the usual confirmation steps most other websites have.

A total mess of a website.
I would still like to try the product but I don't use cheques at all.

I tried Dermocinz several years ago, website was the exact same.

It had no effect whatsoever on me. And if the website has not changed at all in all these years, it really doesn't imply that business is going well ...