Psoriasis

rubadub · 16-01-2014 2:09pm

wonga77 wrote: »

i somehow managed to scald my leg, just to the side of my shin. I hadnt noticed any hugely visable effects to my p. I was starting to wonder how effective the bulb was, well i got my answer.
I was messing around on the internet and lost track of time, overdid my time by 3 or so minutes.

The timer is essential, I often use 2 timers, my iphone has a countdown timer and last night it was running low and ran out of power, I spotted it, my old phone used to give a few final beeps when turning off but this just turned off and could easily have been missed. It had given a 10% warning so I was on the lookout for it. I would apply sudocrem and/or aloe vera gel to the spot, it might get worse in the coming days.

You need a timer that beeps, I used to watch tv with the teletext clock on the corner of the screen, but you could forget when you started and so not know when to stop, and if you are engrossed in a program you can forget altogether.

I had replied to this post below the other day but it somehow did not go through

wonga77 wrote: »

Tried it today and its really tempting to stay under it for a few minutes as you dont feel any sensation. So il start with 30 ish seconds at a time and see how I get on.

I was saying the bulbs are prescription only in the US, and should be best viewed as prescription drugs. You would not say "sure these pills are tiny, I'll have a few more". I fully agree it is tempting at first as you feel nothing and want to use the "new toy" more, or think the manufacturers/guides were being overly cautious.

You can see instructions here
http://www.beatacne.org/forms/dermalight80.pdf

My bulb has no cover so it could directly contact the skin, this can cause sunburning, not from the heat of the bulb, but you have a greater intensity of light on the skin than if its a few cm away.

Call Me Jimmy · 16-01-2014 2:55pm

So can someone with success with a UVB light recommend one to buy online? I know it could technically be made by myself but I'd rather buy all in one. I just want to be able to get a reputable one, or at least where the bulb is guaranteed uvb?

wonga77 · 16-01-2014 3:09pm

@ Jimmy
http://www.ebay.ie/itm/261275913795

This is the one i bought, i was going to make one up myself but was worried id end up with the wrong fittings, at least this way I knew it would all fit together. Incl postage I think it cost me about 80 yoyo's, so not too bad, I think the bulb on its own can be 30 to 40 euros on its own. I got the correct philips uv bulb that was mentioned earlier in the thread, they threw in a european adaptor plug too which was handy.

@rubadub, yeah I was so careful at the start, i have been using the timer on my iphone but really need something better, as you said its easy lose track of time. I sit at the computer while the lamp is woring away on my legs, i managed to forget myself and overdid the time. It didnt hurt at first but i woke in the middle of the night with a horrible itching sensation. Pretty much the same as your normal sunburn, not nice.
Lesson learned though

Call Me Jimmy · 16-01-2014 3:15pm

So are you saying I should order a bulb separately wonga? Cheers btw

wonga77 · 16-01-2014 5:33pm

no, i got the correct bulb with it, Rubadub linked to it (the correct bulb i mean) somewhere earlier in the thread. What i meant was that to buy a bulb on its own is 30 - 40 euros and finding another suitable lamp was costing me another 50 on top. By buying it through ebay in the link I showed, I got a suitable lamp with flexable arms, the correct bulb, goggles and postage for what I consider to be a good price. Im not sure you would do much better buying the bits and pieces seperately.
Rubadub made a great point earlier when i linked to another light I was looking at http://www.androv-medical.com/product/27/dermfix-1000mx-uv-b-lamp-for-psoriasis--vitiligo-or-eczema
Basically they just call these "medical lamps" and instantly add 100 to the price. Its made up of the same basic components that you can buy yourself for half the cost

rubadub · 16-01-2014 6:21pm

wonga77 wrote: »

Im not sure you would do much better buying the bits and pieces seperately.

Probably not, esp. as you might need to fork out for 3 postage costs.

I think philips are still the only ones making narrowband UVB bulbs. You will see UVB bulbs for reptiles which is not what you want! Some also sell another 9W philips bulb which is UVB but not narrowband, they work but narrowband was always recommended over it on every site & study I saw.

The cheapest bulb I see on ebay is from israel for $50 which includes postage

the same ebay linked seller also has a cheaper model, but I would prefer the previous one as the arm is longer and can be got into more positions

http://www.ebay.com/itm/UVB-Narrowband-311nm-9W-Lamp-arm25cm-VITILIGO-PSORIASIS-PHILIPS-PL-S-9W-01-2P-/261270033096?pt=US_Skin_Care&hash=item3cd4e852c8

my bulb was €50 from the UK, the shop is no longer selling them.

wonga77 wrote: »

Basically they just call these "medical lamps" and instantly add 100 to the price.

And they would be sold in lower volumes than office lights. Some have timers built in so it is turning off the bulb itself, so you are not relying on yourself to do it.

The medical tag is a definite factor though. Scholl, the feet people, sell sodium bicarbonate for deodourising shoes and charge a fortune, this is simple baking soda, go to the baking isle and get it for a fraction of the price. Same goes for antacids, some are just baking soda, or rennies are calcium carbonate, bags of foodgrade calcium carbonate can be got in wine making shops for a fraction of the price.

huskerdu · 17-01-2014 5:35pm

Also, medical devices are subject to very, very rigorous testing, regulatory compliance and certification requirements which seriously pushes up the cost for low volume products.

rubadub · 20-01-2014 11:38am

I have been trying to follow the Pagano diet for about a week and am seeing good improvements. As I said before his book is full of some odd things and I would really like to see the reasoning behind it.

I have been trying to be off anything containing tomato and potato. This rules out loads of stuff. I have not been off fried stuff which he recommends. I have also not given up drinking and drank a lot and had no real bad reaction. I have tried to cut down on wheat a lot too, eating lots of fruit & veg.

This is from the book

If I find early on in my course of treatment that a patient is unwilling to accept the fact that he or she must avoid hard liquor in any form hard liquor in any form, I have no qualms in advising against further treatment.

So if I had been his patient he would have advised against further treatment, even though it seems to be working :rolleyes: Its things like this that annoy me, and some other bits in the book seem very anecdotal.

He is not a dermatologist but a chiropracter which some regard as quacks. He recommends colonics which some also regard as "snake oil".

From reading the book it would seem the alcohol leads to "leaky gut syndrome", so basically irritates and weakens intestinal walls allowing toxins to get into the blood. It is not strongly inferred that alcohol is a toxin that causes psoriasis itself, rather it will weaken the walls. So if I keep drinking the walls maybe weak, but if no toxins are ingested there is nothing bad to transfer across. Now I do think alcohol is certainly not going to be good in anyway, but its stupid to just not try any of the rest. Usually while drinking I might well have gotten a big bag of chipper chips eaten with a load of ketchup, which would be a killer if the theory is to be believed. -extra weakened walls allowing the toxins through.

He has tomato as the number 1 nightshade to avoid, and includes peppers, bell & chilli peppers (black pepper is fine), and potatoes. But there is no quantity said, or relative potency. e.g. I have really strong chilli pepper, so if I add a tiny pinch is that just the same as a tiny pinch of potato flour -i.e. going to do very little but add a lot of taste. In fact he recommends laxative type foods and the hot chilli powder could even be of overall benefit.

brevity · 20-01-2014 12:27pm

rubadub, have you heard of Jason Vale? He's a fairly popular juicing personality who suffered from Psoriasis for a number of years and cleared it all up by juicing. IMO he gives some good reasoning behind the recipes and why you should eat one thing instead of another.

Here is a document on his clear skin programme:
http://c203605.r5.cf1.rackcdn.com/Clear_Skin_Programme.pdf

I've tried some of his juices and they are quite nice, I just need to be a bit stricter with the routine.

With regards to drink, I've found that wine, spirits and certain craft beers drive my skin crazy. Tiger Beer seems to be one of the few beers that doesn't affect it.

After a bad few weeks, I'm going to have cut back on a lot of things. My skin is destroyed from scratching

rubadub · 20-01-2014 2:25pm

brevity wrote: »

rubadub, have you heard of Jason Vale?

Saw his face before alright. Many would think of juicing as a bit of a dodgy science too, just saying eat the stuff.

The guide seems suspiciously like the pagano diet, at first I just thought it was coincidence and just good advice, but one bit did make me think it was copied, this bit

Red Meat (Pork & Beef especially) [SOS]
This also includes all guises they come in, such as hot dogs, burgers, luncheon meat, patés, ham, bacon, etc. Lamb is the only red meat allowed occasionally

Pagano also allowed lamb and gave a few reasons, but I did think it seemed he was on the anti-sat-fat bandwagon -yet then goes on to recommend coconut oil and never mentioned its high sat fat value.

The only specific reason I see him (Vale) give for alcohol is dehydration, and strangely does not recommend drinking more water to counter this, which I do. I also drink baking soda solutions to counter the acidity. I am a heavy drinker and have friends who drink a lot, a few have problems with ulcers and another has psoriasis. I am thinking the leaky gut syndrome is believable, the "stomach ulcer guys" just get it in a different area. Of course the dehydration is another bad effect and can lead to very bad skin cracking.

The brazil nuts was interesting, I was wondering which nut was best, I will check the pagano book, I don't recall seeing the specifically mentioned as beneficial due to zinc & selenium, possibly did say zinc.

brevity · 20-01-2014 3:40pm

I'm beginning to think the same re leaky gut, just have to eat the right foods to help with that. No matter how many creams, moisturisers and ointments I use, I feel that this is definitely an "inside problem".

wonga77 · 20-01-2014 8:22pm

I never bother with the diet stuff,
Sure you cant eat a thing reading that list, tomatoes, potatoes, hot and spicy nightshade foods, Currants,Large Prunes,Plums,Strawberries,Oranges,Lemons,Limes,red meat, dairy, grains, wheat and yeast, crabs, lobsters, mussels, oysters, scallops etc or any smoked, pickled or fried fish,sweets, tobacco, alcohol, orange juice, coffee, carbonated drinks,

Dairy, grains and wheat cover a huge range of foods alone

Jeez there isnt much more to eat

Gael23 · 20-01-2014 8:30pm

Yeah I'm the same with diet, I don't eat crap but my diet is far from perfect. I got a pretty bad flare up over the weekend so I went to GP today and he put me back on strip onager ointment for a while and possibly wants me to see a dermatologist in the next few months because he wants to know more about the long term safety of protopic.

Call Me Jimmy · 20-01-2014 8:55pm

I'm going to order that UVB lamp tonight. Wonga hows it going for you? I shouldn't have the problem of timing or leaving it on too long because I would meditate while it's working away. I take it instructions come with it or do ye just read online?

My skin is actually doing well with hyaluronic acid and apple cider vinegar. I just feel the lamp will really add some extra consistency. I literally do not come in contact with direct sunlight so its bound to have some affect.

Will I Amnt · 20-01-2014 10:38pm

wonga77 wrote: »

I never bother with the diet stuff,
Sure you cant eat a thing reading that list, tomatoes, potatoes, hot and spicy nightshade foods, Currants,Large Prunes,Plums,Strawberries,Oranges,Lemons,Limes,red meat, dairy, grains, wheat and yeast, crabs, lobsters, mussels, oysters, scallops etc or any smoked, pickled or fried fish,sweets, tobacco, alcohol, orange juice, coffee, carbonated drinks,

Dairy, grains and wheat cover a huge range of foods alone

Jeez there isnt much more to eat

I stuck to the Pagano diet religiously for nearly 2 years. Looking back I honestly don't know how I did it. I used to study every label in the supermarket before it went in the trolley, even trace amounts of any "bad" ingredients and they wouldn't make it in.

I was more or less totally clear after a few months and stayed that way for the duration. I'm as sceptical as they come and I kept looking to attribute it to something else but it did work for me, well, to be honest I think it was just not drinking that did it. I started to drink again and it gradually came back, now I haven't been drinking in 4 months and it's gradually clearing up again.
I still avoid the nightshades but I don't think I could ever go through the whole thing so strictly again, I'm naturally slim but I was stick thin by the end of it.

I'd recommend anyone to try it for at least a few months and gradually introduce the things you find it hard to do without.
It does take a monumental effort to do it properly. I never knew I had that discipline in me tbh, I do love my food, although you wouldn't guess by looking at me :pac:

wonga77 · 21-01-2014 1:02am

Call Me Jimmy wrote: »

I'm going to order that UVB lamp tonight. Wonga hows it going for you? I shouldn't have the problem of timing or leaving it on too long because I would meditate while it's working away. I take it instructions come with it or do ye just read online?

My skin is actually doing well with hyaluronic acid and apple cider vinegar. I just feel the lamp will really add some extra consistency. I literally do not come in contact with direct sunlight so its bound to have some affect.

Not going to lie, it's not working as well as I'd hoped, il post a more detailed response in the morning

Amazingfun · 21-01-2014 10:17am

Just an update:

I have psoriasis on my elbows mainly, and scalp. The elbows have completely cleared up since I've been doing the "AIP", and the scalp has calmed as well. Now, as we all know too well, they may return, but for now this is a good result for the protocol. May be worth a shot to some here struggling.

http://www.thepaleomom.com/2012/04/modifying-paleo-to-treat-psoriasis.html

** I am on Day 21

Amazingfun · 21-01-2014 10:24am

By the way, for people saying there isn't much you can eat, I'm afraid that is bollox. I love food, and have weight to lose, but I am almost a stone down in 21 days, although that isn't the point of the protocol, the point is to "heal your gut", etc.

I eat roast chicken, fish, beef, pork, bone broth soups, apples, raspberries, bananas, plantains, a ton of vegetables including gorgeous sweet potatoes, I even make treats with coconut cream, etc. You will never go hungry, it's just getting used to dropping some of the former habitual foods, which for me included a lot of crap, lol.

Anyways, good luck in whatever road you choose.

wonga77 · 21-01-2014 11:36am

Right on the uvb lamp, 21 days in, I think ive missed about 4 nights max due to being out and about. Now im not expecting miracles but I did expect to be making better progress. The p has thinned out but im also using a cream which has worked well for me in the past (magicream, saw someone mention it earlier)
I do each area for 3 minutes max, I dont think its too safe to go much more and i do not want to overdo it, especially after burning myself, which took a good few days to heal. Interestingly the piece of my leg that I burnt has now more or less totally cleared but its not safe and I definately wont be doing that again.
I may try to cut out some foods, I also like my drink so il try give that a skip for a few weeks and see how I go.
I would still recommend the uv light, every person will get different results and you will never know until you give it a try. Like I said earlier, my cousin had a few sessions in a uvb sunbed and it cleared him up completely and he was covered in it.

Btw, there are no instructions with the type I bought, so for me it was a bit trial and error to start with, I did a bit of research on it and found that most recommend to start off slow and find out how your skin reacts as you progress. I started at 30 seconds and was up to 3 minutes in a short time. I wouldnt say Im a pale skin shade though which would probably burn easier, my skin would be used to the sun (whenever we get it)

deadeye187 · 21-01-2014 11:46am

I have plaque psoriasis, its in all the places you would expect to find it. I have tried so many things but what works for me is moisturising twice a day with paraffin gel and using the special cream my dermatologist gave me, I only use this when I need it as I find the Paraffin gel keeps it under control for the most of it.

As I said this works for me and would not work for others, but once I have a drink it will come back super aggressive, leading me to live the quite life! Not a bad compromise.

rubadub · 21-01-2014 11:53am

wonga77 wrote: »

I never bother with the diet stuff,
Sure you cant eat a thing reading that list, tomatoes, potatoes, hot and spicy nightshade foods, Currants,Large Prunes,Plums,Strawberries,Oranges,Lemons,Limes,red meat, dairy, grains, wheat and yeast, crabs, lobsters, mussels, oysters, scallops etc or any smoked, pickled or fried fish,sweets, tobacco, alcohol, orange juice, coffee, carbonated drinks

The juice/Vale diet said no citrus, Pagano allows it -it had some odd rule though, like not mixing it with grains. Pagano does allow some of things in your list.

As I said before the logic/reasoning of some of the things is not spelled out. Some seems nonsense to me, as in makes no logical sense.

The main ones are tomato & potatoes & alcohol. I am off tomato & potato. I am eating sweet potato chips done in an airfryer, I cannot understand his logic against frying when baking is so similar, I wonder what he would make of the airfryer! I have swopped garlic sauce for ketchup. I ate mackerel for the first time in decades and actually liked it, must have been forced fed it once as a kid and hated it, it was tin of teryaki mackerel.

A lot of the diet stuff is good for general health and weight loss so doesn't bother me too much.

The other way of looking at saying "look at the list, theres nothing left to eat" is "jaysus, nearly all the food I eat is on that list, no wonder I am bad". If it is a true hypothesis.

Call Me Jimmy wrote: »

I take it instructions come with it or do ye just read online?

These are instructions for the dermalight which is using the exact same 9W bulb. It has a comb built in which the instructions reference, most of the instructions are otherwise applicable.

http://www.beatacne.org/forms/dermalight80.pdf

its says in it
Use sun lotion with a high sun block factor (≥15) on your forehead.
I use zinc oxide based creams as a sun block if needed, like sudocrem or other white nappy rash creams.

I read my boots nappy rash cream again and its made of zinc oxide, castor oil & peanut oil. Both these oils are recommended in the Pagano book, he says castor is too thick to use on the scalp. I have a shaved head so find it great. This is the stuff http://www.boots.ie/en/Boots-Baby-Zinc-Castor-Oil-Cream-1-x-250ml_924158/

Call Me Jimmy · 21-01-2014 7:01pm

I'm going to spend the bit of extra cash on a lamp with extremely positive reviews on amazon. If I'm buying one I want to make sure it's a once of and I amn't left wondering 'have i bought something that won't do the job'.

So I'm going to pay 200 for one with 25 5 star reviews out of 26.

Wonga I think the fact that it cleared up after the burn probably means if you stick with it it will clear up!

Gael23 · 21-01-2014 7:42pm

Jimmy do you put the apple cider vinegar all over your body?

Call Me Jimmy · 21-01-2014 8:04pm

Well not at the moment, I put a bit mixed with water in a tub and the rub it on my face and scalp with a cotton pad. I haven't had any problems with it, I also use the hyaluronic acid just rubbed into skin on around my nose. I've managed to keep it under control like this. Years of rubbing and ruining that part my of my face left it pretty damaged so I think the lamp will hopefully be the final cog.

Gael23 · 21-01-2014 8:07pm

You have to be so careful what you use on your face. Some of the creams specifically say do not use on the face. When I have my face under control with protopic, I sometimes use E45 moisturiser to keep it good for longer.
Have you plaques on other areas besides your face?

Call Me Jimmy · 21-01-2014 8:26pm

Nothing really mentionable no. I did have a small circular patch on my leg but that has disappear as i've been doing a lot of leg-based yoga. The fear of showering and aggravating my skin means my skin has not been as clean as it could be but I'm getting over that I think with the recent stability. I actually will try the apple cider vinegar on my upper arms as well, they've always been a bit blotchy.

Gael23 · 21-01-2014 9:25pm

Never tried this but once a doctor told me to use emulsifying ointment as body wash. He said that you want to build up the lipid layer on your skin that is damaged my psoriasis.

wonga77 · 22-01-2014 12:37am

Call Me Jimmy wrote: »

I'm going to spend the bit of extra cash on a lamp with extremely positive reviews on amazon. If I'm buying one I want to make sure it's a once of and I amn't left wondering 'have i bought something that won't do the job'.

So I'm going to pay 200 for one with 25 5 star reviews out of 26.

Wonga I think the fact that it cleared up after the burn probably means if you stick with it it will clear up!

Cool, keep us updated

rubadub · 22-01-2014 10:37am

Call Me Jimmy wrote: »

So I'm going to pay 200 for one with 25 5 star reviews out of 26.

Have you a link to this? have you heard of www.flubit.com ?

You can enter in the amazon link and it will try and get you a better price, on a high markup item like these lamps it can offer good reductions. But it has got to be sent via parcel motel as the flubit offers are only to the UK.

Call Me Jimmy wrote: »

Years of rubbing and ruining that part my of my face left it pretty damaged so I think the lamp will hopefully be the final cog.

I have seen many warnings about uvb on the face, especially the eye protection, closing your eyes is not enough.

Call Me Jimmy · 22-01-2014 11:05am

Was not aware of this, would sunglasses work? Or goggles (or do the goggles do nothing :pac:)

Psoriasis

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