Psoriasis

fighterman · 19-11-2016 12:13pm

wonga77 wrote: »

I wish it were that simple, a strict no wheat gluten free diet for well over a year made zero difference to my psoriasis. You keep on beating that drum though...

Aware that it isn't going to work for 100% of people. The drum I'm beating is that when someone presents to a GP , the default response should be 1) please try an elimination diet for 3 weeks and/or 2) we will take a blood test and do Cyrex lab testing for gluten intolerance. If after 1) no improvement 2) negative then at least you can say well it isn't diet related.

But right now as a rule neither happens when someone presents to an irish gp. Instead the patient is given by and large useless topical creams and shampoos and the patient goes on a mini tour of irish hospitals and dermatology units without ever getting closer to a cure. .There's a huge amount of posts on this forum along those lines.

Jungle tribes don't suffer with seb derm, psoriasis, keratosis, vasculitis. They also have simple diets. 2+2=4. I don't believe in the majority of cases the issue is stress, weather, tiredness anything like that.

But dietary issues should be ruled out first of all. That's the drum I'm beating

wonga77 · 19-11-2016 1:01pm

But what about all the people (like myself) who have tried all the dietary issues with no improvement?
Your post finished with "This is a very curable condition and the cure is very simple!"
I just find that tone condescending as this thread is full of examples of people who have gone about changing their diet completely, staying off several foods which can be very difficult and expensive to do, but you just say ya change of diet cures all.

The only thing which has ever made any significant change for me, apart from dovenex and a few other topical ointments, is the sun. Unfortunately I havent been on a sun holiday for a few years now and our summers are very hit and miss

Gael23 · 19-11-2016 4:24pm

wonga77 wrote: »

The only thing which has ever made any significant change for me, apart from dovenex and a few other topical ointments, is the sun. Unfortunately I havent been on a sun holiday for a few years now and our summers are very hit and miss

I agree with this. Tried almost everything and paid a ridiculous amount of money for some things but only topical treatments and biologic medication which I'm on now have worked. Biologics have been a particularly good experience for me and I hope I can stay on them for a very long time.

Mountainsandh · 20-11-2016 2:01am

fighterman wrote: »

Aware that it isn't going to work for 100% of people. The drum I'm beating is that when someone presents to a GP , the default response should be 1) please try an elimination diet for 3 weeks and/or 2) we will take a blood test and do Cyrex lab testing for gluten intolerance. If after 1) no improvement 2) negative then at least you can say well it isn't diet related.

But right now as a rule neither happens when someone presents to an irish gp. Instead the patient is given by and large useless topical creams and shampoos and the patient goes on a mini tour of irish hospitals and dermatology units without ever getting closer to a cure. .There's a huge amount of posts on this forum along those lines.

Jungle tribes don't suffer with seb derm, psoriasis, keratosis, vasculitis. They also have simple diets. 2+2=4. I don't believe in the majority of cases the issue is stress, weather, tiredness anything like that.

But dietary issues should be ruled out first of all. That's the drum I'm beating

Do you have any links to studies about jungle tribes' health ? Not being difficult, I'd be genuinely interested, will do a search myself in a sec.

If we assume in a general manner that yes, a lot of tribes do not suffer from such ailments, then another point to consider is simply ... genetics.

Maybe we are just unlucky that our genetic pool is likely to be the cause of our caucasian ailments, just like other weaknesses in other nations can be traced to ancestors' DNA.

Shoneen · 28-11-2016 5:46pm

Well I finally got to see a dermatologist today and they agreed that I was well beyond topical steroids. They seem to be of the view that methotrexate is the way their going to go with me but I had to do a series of blood tests first to confirm I'm okay to go on that treatment.

Obviously the thing that stands out about using methotrexate is the no alcohol rule. I'm really not a big drinker - primarily because I have practically zero social life these days - but I do enjoy having a couple glasses of wine at the weekend when we finally get the kids to bed. I don't mind going without wine most of the time but I do mind the prospect of not having the option.

Anyway is anyone here on methotrexate and whats the experience been like (apart from sober)?

Gael23 · 28-11-2016 8:23pm

I personally wouldn't take methotrexate because of the potential side effects but that's just how I feel.

Hal1 · 28-11-2016 9:04pm

Omega3 fatty acids sorted it out for me.

fighterman · 28-11-2016 10:21pm

Shoneen wrote: »

Well I finally got to see a dermatologist today and they agreed that I was well beyond topical steroids. They seem to be of the view that methotrexate is the way their going to go with me but I had to do a series of blood tests first to confirm I'm okay to go on that treatment.

Obviously the thing that stands out about using methotrexate is the no alcohol rule. I'm really not a big drinker - primarily because I have practically zero social life these days - but I do enjoy having a couple glasses of wine at the weekend when we finally get the kids to bed. I don't mind going without wine most of the time but I do mind the prospect of not having the option.

Anyway is anyone here on methotrexate and whats the experience been like (apart from sober)?

Why no discussion of an elimination diet? I'm not going to waver from my view that this should be the default response for ALL skin conditions.

fighterman · 29-11-2016 1:11am

Mountainsandh wrote: »

Do you have any links to studies about jungle tribes' health ? Not being difficult, I'd be genuinely interested, will do a search myself in a sec.

If we assume in a general manner that yes, a lot of tribes do not suffer from such ailments, then another point to consider is simply ... genetics.

Maybe we are just unlucky that our genetic pool is likely to be the cause of our caucasian ailments, just like other weaknesses in other nations can be traced to ancestors' DNA.

A guy called Weston Price is your resource here.

Totally disagree on your gene pool assertion. We are suffering a health epidemic as a result of the consumption of a strain of wheat protein which should have never been deemed fit for human consumption.

In 30-40 years time, it's possible that that generation will look on us and our mass consumption of gluten in the same way we look back in pity at smoking in the 1950s and 1960s

witchgirl26 · 29-11-2016 11:01am

fighterman wrote: »

Why no discussion of an elimination diet? I'm not going to waver from my view that this should be the default response for ALL skin conditions.

I've done a complete elimination diet for other medical reasons and my psoriasis actually got worse during the time I was off most things and only stabilised when my diet returned to a semi-normal state - which did include gluten (although a lessor amount but that was due to my other medical condition).

Maybe it does work for some people but I wouldn't think it's the cure all for everyone.

Mountainsandh · 29-11-2016 9:49pm

fighterman wrote: »

A guy called Weston Price is your resource here.

Totally disagree on your gene pool assertion. We are suffering a health epidemic as a result of the consumption of a strain of wheat protein which should have never been deemed fit for human consumption.

In 30-40 years time, it's possible that that generation will look on us and our mass consumption of gluten in the same way we look back in pity at smoking in the 1950s and 1960s

The guy doesn't look very convincing to be honest.
Just one little quote amongst others on wiki :

Stephen Barrett, writing on the Quackwatch website, dismissed holistic dentistry and much of Price's research, writing "Price made a whirlwind tour of primitive areas, examined the natives superficially, and jumped to simplistic conclusions. While extolling their health, he ignored their short life expectancy and high rates of infant mortality, endemic diseases, and malnutrition. While praising their diets for not producing cavities, he ignored the fact that malnourished people don't usually get many cavities."

Interesting stuff about Auto immune diseases and genetics here. http://www.nature.com/jhg/journal/v60/n11/full/jhg201594a.html?cookies=accepted

wonga77 · 30-11-2016 12:29am

https://en.wikipedia.org/wiki/Weston_A._Price_Foundation

The foundation has been criticized by the U.S. Food and Drug Administration (FDA) for its advocacy of drinking raw milk and by Joel Fuhrman, MD for its advocacy of the health benefits of animal-based fats.

John Robbins has written a critique in which he reviews the history of the Weston Price Foundation and provides evidence that Weston Price had recommended a vegetarian and dairy diet to his own family members as the healthiest diet. The foundation has cited Price to the effect that he did not recommend a vegetarian diet. The anti-vegetarian and anti-soy views of the foundation have also been criticized as "myths" in several publications.

Joel Fuhrman has written a series of articles entitled "The truth about the Weston Price Foundation" in which he argues the Foundation is a purveyor of "nutritional myths", largely because they have failed to update their recommendations in light of contradictory evidence.

Quackwatch describes the Foundation as promoting "questionable dietary strategies" and Price's core assumptions as contrary to contemporary medical understanding.

fighterman · 01-12-2016 10:31pm

wonga77 wrote: »

https://en.wikipedia.org/wiki/Weston_A._Price_Foundation

The foundation has been criticized by the U.S. Food and Drug Administration (FDA) for its advocacy of drinking raw milk and by Joel Fuhrman, MD for its advocacy of the health benefits of animal-based fats.

John Robbins has written a critique in which he reviews the history of the Weston Price Foundation and provides evidence that Weston Price had recommended a vegetarian and dairy diet to his own family members as the healthiest diet. The foundation has cited Price to the effect that he did not recommend a vegetarian diet. The anti-vegetarian and anti-soy views of the foundation have also been criticized as "myths" in several publications.

Joel Fuhrman has written a series of articles entitled "The truth about the Weston Price Foundation" in which he argues the Foundation is a purveyor of "nutritional myths", largely because they have failed to update their recommendations in light of contradictory evidence.

Quackwatch describes the Foundation as promoting "questionable dietary strategies" and Price's core assumptions as contrary to contemporary medical understanding.

What point are you making wonga77? Surely the US FDA isn't in a position to be too critical , given that it was responsible for the Low Fat mantra which dominated food thinking until recent times, but which is now thankfully fading out.

Modernisers like Gary Taubes, Andreas Eenfeldt, William Davis, Tim Noakes would be far closer to the Weston Price approach than the US FDA and its dietary advice which is strongly influenced by the food industry.

Have a read of dietdoctor.com if you believe Weston Price is old hat .

A modern and sensible approach to health

ibarelycare · 02-12-2016 10:13am

fighterman just because something worked for you, it doesn't mean it will work for others. That's one of the many unfortunate things about psoriasis...everyone reacts differently to different treatments.

Shoneen wrote: »

Anyway is anyone here on methotrexate and whats the experience been like (apart from sober)?

Gael23 wrote: »

I personally wouldn't take methotrexate because of the potential side effects but that's just how I feel.

I've been on methotrexate for about 8 years and the positives far outweigh the negatives IME. My doctor told me if I drink at weekends, then take it in the middle of the week. So I've always taken it on a Tuesday/Wednesday. I still have a perfectly normal social life and drink once or twice a week. I'm more susceptible to colds, and have had the flu twice in the last few years (having never had it before in my life). My eyesight has also disimproved, which I feel could a side effect (I've read that it can be) but my doctor thinks not. I wear glasses anyway so it's not a big deal.

I suffer from psoriatic arthritis and my psoriasis is completely under control 90% of the time as a result of my medication (I'm on Humira as well). When I do get flare ups they're very mild.

You have to be very careful not to get pregnant if you're on methotrexate as it can cause birth defects. Luckily I don't want to have children, but if I did I'd be very torn on what to do. You have to be off methotrexate for 6 months before even trying to get pregnant, and obviously cannot go back on it until after you have given birth. Two years off methotrexate would likely leave me unable to walk/work etc. I'd have no quality of life.

Shoneen · 04-12-2016 7:11pm

ibarelycare wrote: »

fighterman just because something worked for you, it doesn't mean it will work for others. That's one of the many unfortunate things about psoriasis...everyone reacts differently to different treatments.

I've been on methotrexate for about 8 years and the positives far outweigh the negatives IME. My doctor told me if I drink at weekends, then take it in the middle of the week. So I've always taken it on a Tuesday/Wednesday. I still have a perfectly normal social life and drink once or twice a week. I'm more susceptible to colds, and have had the flu twice in the last few years (having never had it before in my life). My eyesight has also disimproved, which I feel could a side effect (I've read that it can be) but my doctor thinks not. I wear glasses anyway so it's not a big deal.

I suffer from psoriatic arthritis and my psoriasis is completely under control 90% of the time as a result of my medication (I'm on Humira as well). When I do get flare ups they're very mild.

You have to be very careful not to get pregnant if you're on methotrexate as it can cause birth defects. Luckily I don't want to have children, but if I did I'd be very torn on what to do. You have to be off methotrexate for 6 months before even trying to get pregnant, and obviously cannot go back on it until after you have given birth. Two years off methotrexate would likely leave me unable to walk/work etc. I'd have no quality of life.

Thanks for that iBarelycare - it's interesting what you say about getting the flu. I read that it reduces the white blood cell count and wondered how likely it was to have an impact. I've never had the flu either and it's over twenty years since I even had a fever - so I'm quite lucky in that respect. I don't relish the idea of losing my good immune system but at least that was good news on the alcohol. Cheers, S

mayobumblebee · 02-01-2017 11:30pm

After an amazing 4 year clear spell I'm now dealing with psoriasis again . No changes in life other than a bit more stress. Just wanted to post where someone might understand the frustration. Starting to receive all sorts of helpful advice on what I'm doing wrong and all the magical cures that worked for some distant friend that someone kinda knows. ðŸ˜§ðŸ˜§ðŸ˜’ðŸ˜‘

Audioslaven · 02-01-2017 11:48pm

fionny wrote: »

Which?

Dithrocream has been VERY effective for me personally, and its cheap and perscription free if got from the UK.

Coal Tar worked in the past for me but is messy, stains (dithrocream can too but I havent found it bad) and some people cant abide the smell.

Dithrocream - This worked for me as well and sorted it for me on both occasions I got it

Gael23 · 02-01-2017 11:49pm

mayobumblebee wrote: »

After an amazing 4 year clear spell I'm now dealing with psoriasis again . No changes in life other than a bit more stress. Just wanted to post where someone might understand the frustration. Starting to receive all sorts of helpful advice on what I'm doing wrong and all the magical cures that worked for some distant friend that someone kinda knows. ðŸ˜§ðŸ˜§ðŸ˜’ðŸ˜‘

I don't believe in those "magical cures". They are often expensive and simply don't work. I know how you feel but 4 years without treatment is an impressive clear spell, 6 months is the longest I ever got. I think you should see your GP and go from there. You might just need a steroid for a while to calm it down. There is a solution, it's not magic but it's just about getting the right treatment and that took me 12 years.

rubadub · 03-01-2017 12:32am

Audioslaven wrote: »

Dithrocream - This worked for me as well and sorted it for me on both occasions I got it

working for me again too, found a cheaper source, shame it's prescription only here, don't think posting sources is allowed. People could go up north to a chemist get it.

Gael23 wrote: »

I don't believe in those "magical cures". They are often expensive and simply don't work.

some of the "miracle cures" have been found to contain steroid creams. Fair enough trying some "miracle cure" if it is simply saying castor oil works which can be got in a chemist, but if you are sending off to a specific place I would be wary.

wonga77 · 03-01-2017 12:44am

Where would one find dithrocream *cough cough*

adocholiday · 03-01-2017 6:22pm

Can dithrocream be used on the scalp? I can't get any polytar shampoo anymore and the Nizoral shampoo I find is better with the tar shampoo than on it's own

rubadub · 03-01-2017 7:30pm

adocholiday wrote: »

Can dithrocream be used on the scalp? I can't get any polytar shampoo anymore and the Nizoral shampoo I find is better with the tar shampoo than on it's own

Yes, I found dithrocream worked very well on my scalp, far better than polytar ,-which was of some benefit. I found nizoral had very little effect.

Polytar is back out after its shortage.

one place I used before has it but only in 150ml bottles, so it seems there might still be a shortage.

This is a new place I have used and would recommend, you can see they have several polytars listed but only the 150ml is available to buy
http://www.expresschemist.co.uk/polytar.html

Gael23 · 03-01-2017 10:03pm

Professor Kirby told me not to use Nizoral. Dithrocream is supposed to be good but I rarely use topical shows anymore since I went on Biologics.

rubadub · 03-01-2017 10:09pm

Gael23 wrote: »

Professor Kirby told me not to use Nizoral.

Did he give a reason? I would presume since it contains a form of sodium lauryl sulphate, I find it bizarre that stuff like this still contains a widely recognised irritant.

Gael23 · 03-01-2017 10:20pm

rubadub wrote: »

Did he give a reason? I would presume since it contains a form of sodium lauryl sulphate, I find it bizarre that stuff like this still contains a widely recognised irritant.

He said it will make me worse but he didn't elaborate on it.

Mountainsandh · 03-01-2017 10:57pm

mayobumblebee wrote: »

Starting to receive all sorts of helpful advice on what I'm doing wrong and all the magical cures that worked for some distant friend that someone kinda knows. ðŸ˜§ðŸ˜§ðŸ˜’ðŸ˜‘

I've become an expert at smiling and saying : "oh right ? yeah ? right, yeah... I might try that some day".

or else I have less patience and I just tell them that I have tried more remedies they can think of at this stage (I'm 43, psoriasis first appeared at 16/17 years of age, has never completely disappeared since except for once after UVB treatment I had only one drop on the wrist for 2/3 months or so, then it built itself up again).

I'm not complaining mind you, I have had a brilliant year. No explanation, not less stress, no change in diet, but I had a clearing a bit everywhere, and not half as many pains in joints. It's still there but it's so much lighter it's great !

It is such a mysterious ailment.

Might try that dithrocream if I can locate it, I hate the other scalp treatments, they leave my hair much too dry.

mayobumblebee · 05-01-2017 12:46am

"No explanation, not less stress, no change in diet, but I had a clearing a bit everywhere, and not half as many pains in joints. It's still there but it's so much lighter it's great !

It is such a mysterious ailment. "

It it such a mysterious one alright. No real change in lifestyle but effects can be so different all the time.

My own stupid joke is...
this leopard can change its spots ðŸ˜‰
Hope your clear spell lasts

kyeev · 06-01-2017 5:39pm

Speaking of mysterious ways of psoriasis...
Was using dovobet on my arms for a few months, about a year ago, to no effect. Gave up.
Meanwhile a nasty itchy patch flared on my lower back in the past few months. Tried a few steroid creams, but ended up using Vaseline to sooth it. Two days ago, thought I'd try the dovobet, cleared it up completely in two days!
Huh? Anyone explain that one?!

wonga77 · 06-01-2017 5:55pm

I have something similar, sometimes the dovobet takes immediate effect and other times it's a complete wasted effort

rubadub · 06-01-2017 6:04pm

kyeev wrote: »

Huh? Anyone explain that one?!

I think the vaseline, or other creams can prepare the skin and make it more readily absorb other creams. I have never used dovobet so cannot really comment on it, could be peculiar to it.

But I had been mixing dithrocream with various other creams. One I use is Lidls SOS hand cream, intended for very dry hands with tough skin. When I put this on bad areas (on its own with no dithrocream) I could feel a tingly sensation, like it was really going to work moisturising the area.

I tried straight 1% dithrocream for the first time ever on a small area last night and it did not appear to have done much, and is not discoloured (I did not wash it off). I have actaully seen more impressive overnight results with the cream diluted down quite a bit.

Studies showed dithrocream worked well with urea based creams, which are also powerful mositurisers, you get them for chapped dry heels of your feet. I have a feeling this is since it really absorbs in so well due to being combined with a potent moisturiser.

Before applying of the more expensive creams I want them to get a good effect and try and get any flakes out of they way, otherwise I feel it is like applying cream on top of a band aid plaster which is going to come off soon. If I have used vaseline I often find I do not really get flakes coming off, but in the shower it can just rub off, leaving very smooth skin underneath. I also found coal tar worked better on smooth exposed skin like that.

Psoriasis

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