Psoriasis

rubadub

KwackerJack wrote: »

I am looking at getting one of the UVB lights myself but there is so many online its hard to know whats reliable and whats not.

All of the small narrowband UVB lights I have seen are using the same philips brand of bulb, so they are essentially all dishing out the same light. The differences then will be build quality, ergonomics (as you will be holding it for some time) and other features like timers or trackers.

Some are charging a fortune just by taking advantage of the "medical device" tag. I expect many have forked out too much thinking it must be better light its outputting since its more expensive.

I see someone on adverts is selling one
http://www.adverts.ie/healthcare/psoriasis-narrowband-uvb-lamp/4059534

Gael23

alie wrote: »

You can buy a big tub of this in the chemist. It's very greasy.

So should I be avoiding this stuff then? He said that it will help to repair the lipid layer in my skin that has been lost.
will go back to him in a few weeks anyway if I feel I need to.
aile I have never used fusibet myself but in what I have used I find ointments far better than creams. I find they cling to the skin better which seems to make them more effective.

huskerdu

ryanf1 wrote: »

So should I be avoiding this stuff then?
.

No, no need to avoid emulsifying ointment, its very good for deep moisturising.
Your doctor has advised you to use it.
For good reason, you should not be taking medical advise from the internet andf the comment about it being greasy was not, Im sure, meant as medical advice not to use something that your doctor has advised.

It is very greasy and it may take a bit of getting used to.

Gael23

huskerdu wrote: »

No, no need to avoid emulsifying ointment, its very good for deep moisturising.
Your doctor has advised you to use it.
For good reason, you should not be taking medical advise from the internet andf the comment about it being greasy was not, Im sure, meant as medical advice not to use something that your doctor has advised.

It is very greasy and it may take a bit of getting used to.

I will give it a try for a few weeks and go back if I can't handle it. He said to use it in the shower in place of body wash so maybe in that case it won't be quite so greasy

dobsdave

Ive had psoriasis for 30 years or so, good days and bad, usual stuff.

Last June I went to the US for two months, and it has improved greatly.
First I thought it was the warm weather, but it hasnt changed with the colder temps.
The only thing I can pinpoint is I stopped drinking coffee.
I didn't think coffee was connected?
Anyone heard of this before?

Call Me Jimmy

dobsdave wrote: »

Ive had psoriasis for 30 years or so, good days and bad, usual stuff.

Last June I went to the US for two months, and it has improved greatly.
First I thought it was the warm weather, but it hasnt changed with the colder temps.
The only thing I can pinpoint is I stopped drinking coffee.
I didn't think coffee was connected?
Anyone heard of this before?

I had not heard that no. It could be hydration? Also I can't imagine (even though I don't know) that caffeine will help with an overactive system.

huskerdu

ryanf1 wrote: »

I will give it a try for a few weeks and go back if I can't handle it. He said to use it in the shower in place of body wash so maybe in that case it won't be quite so greasy

I was advised to use it in the bath and your skin feels great afterwards.
It is great to use as a soap substitute

Gael23

huskerdu wrote: »

I was advised to use it in the bath and your skin feels great afterwards.
It is great to use as a soap substitute

Do you just put some into your hand and rub it into your skin or apply using a facecloth?
I picked up the prescription since my last post and I haven't used it yet but it is very thick. To me it bears resemblance to candle wax its so thick and greasy. Will be using it tomorrow so will see how it goes.

huskerdu

ryanf1 wrote: »

Do you just put some into your hand and rub it into your skin or apply using a facecloth?
I picked up the prescription since my last post and I haven't used it yet but it is very thick. To me it bears resemblance to candle wax its so thick and greasy. Will be using it tomorrow so will see how it goes.

When using it in a bath, you dissolve a lump in hot water ( straight from the kettle) and add this to the bath. I am not sure how best to use it in the shower.
I don't think it matters. Wing it and see what works.

michael999999

ryanf1 wrote: »

Do you just put some into your hand and rub it into your skin or apply using a facecloth?
I picked up the prescription since my last post and I haven't used it yet but it is very thick. To me it bears resemblance to candle wax its so thick and greasy. Will be using it tomorrow so will see how it goes.

I use epaderm on all affected areas before bed, and just shower it off in the morning.

When in the shower you can just put a lump of it on your face cloth and use it instead of body wash. It liquifies when wet and is easy to wash with!

Red Nissan

alie wrote: »

Hi all, I keep flaring up, the rash is now on my legs too, never had it here before. The doctor has me on Fusibet cream, one tube does not go far and at 20 euro its expensive, also on claritymicin. He wants me to try betnovate cream as opposed to the ointment , anybody on this and how effective is it, many thanks in advance.

Fusibet, I don't know.

Bernovate is pretty good, the cream is dry. It can be used on the face too so in this instance the cream is better.

Generally the ointments are more effective as already mentioned but they can stain clothes and they remain liquid and shine and get on things and some tend to leave whiter patches.

Betnovate is really pricy though, I've bought it on the drug scheme and in the last few year on a medical card.

alie

ryanf1 wrote: »

I will give it a try for a few weeks and go back if I can't handle it. He said to use it in the shower in place of body wash so maybe in that case it won't be quite so greasy

I use it all the time , sometimes its easier to melt it gently in a cup and then pour it in to your bath as I don't have really hot baths and it tends to float otherwise. I will get the chemist to give me the ointment instead, thanks,

Gael23

I used the emulsifying ointment in the shower today and I firstly wet my skin before I applied the ointment as I thought it might help soften it, which it did. I've just read an article which said to apply it to dry skin as a soap substitute so maybe I didn't do the right thing

michael999999

ryanf1 wrote: »

I used the emulsifying ointment in the shower today and I firstly wet my skin before I applied the ointment as I thought it might help soften it, which it did. I've just read an article which said to apply it to dry skin as a soap substitute so maybe I didn't do the right thing

You can apply it straight on to your skin, leave it for a few hours before you go for your shower then just wash it off.

I use it at work and before going to bed.

Red Nissan

ryanf1 wrote: »

I used the emulsifying ointment in the shower today and I firstly wet my skin before I applied the ointment as I thought it might help soften it, which it did. I've just read an article which said to apply it to dry skin as a soap substitute so maybe I didn't do the right thing

There are many different ways to use it, it's all good.

I used to make up a mixture which I swore by, a cup of emulsifying ointment, one serving spoon of Dermovate and one Spoon of Coal Tar Oil ~ best of all worlds IMO.

You can mix the emulsifying ointment with almost anything, this ointment is mild and can be left on for a good bit, but I no longer agree with the long treatment times as I [for me] find it will soak to its maximum relatively quickly. Instead I've adopted shorter more frequent 'short' soaks.

wonga77

What are peoples thoughts on uvb treatment. A cousin of mine suffered very badly, i would say 60% coverage, went for uvb treatment and 2 years later has never looked back, no outbreaks and just 1 visit a year for a few mins and he's sorted.
I have tried every single cream out there and no good. I asked for the docter to refer me to a specialist but there is a huge waiting list.
So to cut a long story short ive been looking at http://www.androv-medical.com/product/217/androv-3000-narrowband-uv-b-lamp-for-psoriasis--vitiligo-or-eczema and so on. Obviously I know the risks and would use carefully
Thoughts anyone?

Mountainsandh

It's brilliant, and every plaque simply goes... but it comes back. For me, pretty quickly (2/3 months back to a bad enough coverage, 6 months to initial coverage).
I doubt one visit a few minutes a year would be enough to keep it in check. And imo a few minutes without the build up to it, in one visit, would burn you pretty bad.*
More like several visits of one minute, and that's another treatment on top of the initial one.

I'm weary enough of it tbh, since for me it doesn't last long enough to pile up the treatments.

But I understand how one could be tempted to do it, and again, and again...

Have never done the home treatment.

* just realized I was thinking of UVA in PUVA. My first treatment was UVBs though, and I think again the hospital treatment was pretty gradual building up to minutes, not bluntly starting with that.

Call Me Jimmy

What are people's experiences with home treatment? I've found a pretty good natural regime which largely keeps it at bay but do get flare ups the odd time.

Is it a case of buying a light and...?

Mountainsandh

I have to say long term, I am still enjoying the benefits of a week long course of oral steroids before the summer !
I never realized they could be that effective, and really, my hands have been the clearest (not fully clear but I can actually see my veins !) they have been in 20 years since the oral steroids. And legs better too.
It seems to have somewhat reprogrammed/reset my immune system, at least that's how it feels to me, that it's not going as much into overdrive.

If the lights were more affordable though, I would probably get one to give it a kick here and there.

Call Me Jimmy

Is the oral steroids those metal-based ones? (No idea what I mean, just someone mentioned something like that).

Can you just ask your GP for them to try?

Gael23

I've only heard good things about it but i'm just not in a position to sign up to a course of treatment at the moment. It really does work and gets a good few months of relief. I would defintely consider it in the near future though

KwackerJack

Mountainsandh wrote: »

I have to say long term, I am still enjoying the benefits of a week long course of oral steroids before the summer !
I never realized they could be that effective, and really, my hands have been the clearest (not fully clear but I can actually see my veins !) they have been in 20 years since the oral steroids. And legs better too.
It seems to have somewhat reprogrammed/reset my immune system, at least that's how it feels to me, that it's not going as much into overdrive.

If the lights were more affordable though, I would probably get one to give it a kick here and there.

Is there not a possibility of a more severe rebound by using oral steroids?

Mountainsandh

Oh God please don't say that :eek::D
I haven't had a rebound yet and that was at the end of May so fingers crossed.

Call me Jimmy I don't know, I'm not very good at taking note of names or composition. I've no idea what it was, but it was steroids, I had to take I don't know, maybe 6 at once the first few days, then towards the end of treatment the dose went down.

They weren't intended to clear the skin psoriasis, that was a happy side effect in the long term though, I asked for a treatment for what I think is psoriatic arthritis, I get plantar fasciitis, back and neck pains, and sometimes knee pain. So before my holidays the plantar was so bad I really had difficulty functioning, and asked the GP if there was anything to be done so I could walk and exercise a bit, and enjoy my hols pain free.
He did warn me that the effect of the steroids on the arthritic pains would be very punctual (last for the length of treatment only), and that proved 100% true, it was lovely while it lasted !
But I did get that extra bonus that (probably helped with the punctual holiday sun), the skin pso cleared considerably (hands are the most spectacular), and as I said, the effect of this is still being felt now, even in winter.

I'm very very tempted to ask for another shot at that quick treatment some time.

edit : I have to say though, that most sites I've read online about PArthritis treatment do not establish it as a fact that PA treatment reduces skin psoriasis. They say it's not at all guaranteed to happen.

sligoface

wonga77 wrote: »

What are peoples thoughts on uvb treatment. A cousin of mine suffered very badly, i would say 60% coverage, went for uvb treatment and 2 years later has never looked back, no outbreaks and just 1 visit a year for a few mins and he's sorted.
I have tried every single cream out there and no good. I asked for the docter to refer me to a specialist but there is a huge waiting list.
So to cut a long story short ive been looking at http://www.androv-medical.com/product/217/androv-3000-narrowband-uv-b-lamp-for-psoriasis--vitiligo-or-eczema and so on. Obviously I know the risks and would use carefully
Thoughts anyone?

I have the dermfix 2000 from that company, i've been on the waiting list for a dermatologist for over two years, so while it is expensive i must say it works really well at diminishing plaques, looks a bit easier to hold than the one you posted. Im guessing that one is more powerful as it says 3000 but imo 2000 is enough, ive burnt myself slightly with just a minute and half with the 2000. The good thing is the burnt skin always cleared the plaques up, did not make them worse as i feared, but you should use short regular exposures and should not need to burn to see results. The unit comes with a timer and a plan and diary to keep track of your exposures and tells you how to find the right exposure for your skin type. Problem for me is finding the time to do it. But twice a week i take a bath with dead sea salts which are a great treatment for my plaques also, and when i dry off i use the uvb lamp. It really clear things up but as another poster said, they always come back.

These treatments do not get to the root of the problem obviously and are only palliativenand worknas long as the treatments are followed. Many docs will say diet has nothing to do with it, in my experience it does, as a change in diet has done wonders for me in just one month. I believe i have an issue that is internal, leaky gut and thinning of the intestinal walls and am trying to follow the diet outlined by dr. Pagano in his book Healing Psoriasis Naturally.

In this diet, you have to eliminate fried foods, red meat, alcohol, eat mostly fruit and veg except nightshades like tomatoes, and also avoid carbs like pasta and bread (brown rice is ok). Drink herbal teas, only one cup of coffee per day if you need it (i do!). Limit cows milk as much as possible, i just have one drop of lacose free in the coffee, i eat goats cheese with my salmon and avocado salads to get my cheese fix (i love cheese) along with natural omega3. Limit sugar as much as possible.

This seems to help with keeping the plaques from coming back. When my psoriasis was at its worst i was drinking pints and getting takeaways all the time. I also worked 12 hr nights so i didnt get enough sleep which i needed to heal. I lost my job because i couldnt do the 12 hr nights any more due to the psoriasis, so i decided to use this time off to heal it once and for all before i do anything else. Simply by cooking at home with only the allowed ingredients and not having the pints and takeaways (that i can't afford any more anyway), i've seen significant improvements in plaque size and thickness, some have disappeared completely (the newer ones) and they are overall less itchy and painful and it has only been one month.

This book says you must be patient and disciplined (which is hard, i love beer and pizza, two worst things for a psoriasis sufferer) and that you will see significant improvments after three months. I also started taking a few spoonfuls of lechithin granules and flaxseed oil and slippery elm bark capsules which the book recommended daily (actually recommends to make a tea from the slippery elm but i didn't like the tea.) Also, i eat much smaller portions as i am using organic ingredients which are more expensive (though not as expensive as steroid creams!) but they don't put so much strain on my digestive system, and overeating is also a no-no on the pagano program.

Steroid creams made my psoriasis much worse in the long run. One time i got a small patch of psoriasis on my face which stressed me out because i had a job interview coming up and my face had always been clear which was the only thing keeping me from totally avoiding socializing, dating, working, etc. I read the pamphlet for dovobet which said not to use on my face so i asked my dr. for an alternative, but she said it was okay to use the dovobet. I ended up with perioral dermatitis, due to steroid cream use, which covered my entire face with red bumps. It took ages to clear up and caused me a lot of embarrassment, and it was uncomfortable as well, and very noticeable because i had to be clean shaven at work and shaving made the bumps even angrier. I haven't used steroid creams at all in over a year and the uv light, dead sea salt, aveeno creams and vaseline are all i use. I really think that if i continue to improve my diet i can get better, and hopefully start exercising again, which i havent been able to do because of psoriasis on my legs, feet and bum, which are all clearing up. Once i get clear and fit i think my confidence will be back and hopefully i will be able for work again (though i will probably have to leave sligo to find one).

rubadub

^^great post there.

sligoface wrote: »

Im guessing that one is more powerful as it says 3000 but imo 2000 is enough,

The 3000 has 2 x PLL36 Watt UVB 311nm tubes fitted as standard (72 Watts total output)

The 2000 is Fitted with 2 x 9 Watt UVB 311nm tubes as standard.

Almost all of these UVB devices are using the same phillips range of bulbs, some charge stupid prices, androv has decent prices. I actually made my own, the smallest you get is the 9W, so the 2000 is just like having 2 of these. I am considering getting another 9W to use alongside my other, so cut treatment time in half.

The smaller units are good as they are handheld and can treat specific spots, mine is mainly on my scalp. I am up to 2-3mins on my scalp in 9 areas on the scalp, i.e. I shine it say in front of my 2 ears, behind 2 ears, further back behind 2 ears, central back, top of my head both sides, totting up to 9. So it takes about 25mins in all. The small ones can be held very close to the skin in awkward places like behind the ears.

The 3000 is pretty big Dimensions: 480mm x 340mm x 70mm (H x W x D) this is more suited to widespread areas. it is 72W vs my 9W, so 8 times the power but probably gives off 10 times the UVB light, since flourescent bulbs usually get more efficient as they go up.

Though androv have good prices, the items are still expensive for what they are. e.g. androv sell 2 bulbs for £130 http://www.androv-medical.com/product/248/2-x-pll36w-narrowband-311nm-bulbs

the unit with them is £358.80 so you are really paying €228.80 for a light fitting and glasses and timer. They would be made in low volumes so would cost more. I posted before about an office lamp which could take a single 9W bulb, it was one which could be moved about so you could position it and not have to hold it, and just read a book or watch tv while its working. Timer is essential of course, I got burned once or twice, but even a recent poster here got burnt in hospital which sounded more severe than my minor ones.

wonga77

Great posts guys, thanks for the feedback. My main problem is most of my lower back (which doesnt bother me hugely) and my legs, front and back and shins which are bad and I am paranoid about them. I play alot of sport and usually have my socks pulled up to my knees (gaa) to cover it all. I was playing basketball last week in a crowded enough area with alot of people watching and I was extremely paranoid, on the way out of the court I passed a person who was quite obviously probably unintentionally staring at my psoriasis. I just felt bad, ive tried every single cream out there with zero results and like I said, my cousin had similar problems and uvb were the only thing that worked for him. If i only had one spot here and there i would try something like you sugested Rubadub. But I have it on my legs, front and back, knees, lower back, chest, shoulders and scalp which is why i feel i need something a bit bigger covering a larger area.
Ideally i would love to try http://www.androv-medical.com/product/214/androv-8000-full-body-uv-b-panel or something similar but financially thats out of my range. I wonder is it possible to put something together cheaper? Like you mentioned the bulbs can be got reasonable, your just paying for fitting frame and glasses and timer.

@ sligoface, re the diet, like yourself I find it so hard to cut out the foods you have mentioned. I do try and I do eat reasonably healthy but its almost impossible, i took an allergy test and took some things out of my diet, gradually i went back on some but cut out dairy for the most part, I use lactose free milk any time i need to, not sure if it helps me but ive got used to it. Dairy gave me other health problems anyway. I just love my beer and pizza though!

Docs always told me stress was a huge factor in psoriasis, I never felt overly stressed but my skin has got 10 times worse in the last 2 years. On the flipside in that timeframe ive never felt so stressfree, got a steady job, built a house mostly from finances from a past job when I was self employed so I have a very managable mortgage and no huge financial stress. Have 2 young smashing kids and a great wife to be. Life is good but yet my psoriasis is steadily getting worse so i often wonder where the stress theory comes from

Gael23

Stress is without doubt a factor for me anyway. I've got exams next week and i'm already back on the steroid cream daily rather than the usual twice weekly.
wonga77, do you use dovobet or any type of ointment? These are really only going to treat the symptoms but it will help you in the short term. I know you can get phototherapy done through hospital so maybe look at that as you shouldn't have to pay.

wonga77

Yeah I tried dovobet before, (not for a while i must admit) I just feel that i become immune to creams and ointments after a short term. Maybe i am stressed without knowing it but i honestly dont feel its a factor at the moment. I would wait for the hospital but there is a huge waiting list, 9 months or something silly, also im 50 miles from the nearest general hospital so its not an option to drive that far for a minute or two treatment every few days

Gael23

I have been using the dovobet for nearly 10 years now and don't feel im developing any immunity to it. The way you use it is a factor too. I use it twice weekly for maintenance and then if I get a flare up I would use it daily.
Its only going to treat the symptoms but it does work.

wonga77

I might just try that again. It cant hurt anyway