Psoriasis

Gael23 · 04-03-2014 6:13pm

rubadub wrote: »

Dovobet is a powerful steroid cream which he had already ruled out.

Many wouldn't touch steroids because of this
http://www.medicines.ie/medicine/5495/SPC/Dovobet+Ointment/

Also some people with it on their scalp could have it partially on their face

The cynic in me still believes some unscrupulous dermatologists will have no bother prescribing steroids as it can mean a customer for life, who has to get prescriptions and suffer rebounds. esp. when I read about one dermatologist who allegedly claimed not to have heard of UVB treatment.

Dovonex is the similar sounding cream with no steroids.

I know Dovobet contains strong steroids but it works. That is why dermatologists and GPs prescribe it as it is one of the most effective treatments out there. When used correctly and very sparingly, it shouldnt have harmful effects. Also it must NEVER be applied to the face.
Dovonex can work without first getting the plaques down with Dovobet. The steroid is needed to reduce the inflammation and redness and after that has happened you then switch to dovonex for maintenence.

My current regime is to use Dovonex Monday to Friday and Dovobet at weekends, I just wish I was with my current GP 11 years ago when this started because all this was from him. Bfore I was just firefighting with Dovobet. I also use Protopic 0.1 on my face which is probably the most effective ointment I have ever used and contains no steroid.

rubadub · 04-03-2014 6:34pm

Any article just published today about the coal tar products
http://www.dailymail.co.uk/health/article-2572425/Coal-tar-shampoo-standby-psoriasis-eczema-So-HAS-trusted-skin-treatment-disappeared.html

Sandoz, which makes Carbo Dome, said its supplier had stopped producing coal tar, so the product would be unavailable until another supplier was found, and stressed there were no safety concerns.
It also claimed it was working with the MHRA on the product's licence, although a spokesperson for the agency said they had no issues with its licensing.
GlaxoSmithKline says changes to licensing and producing Polytar meant supply would not be restored until 2016.
Lack of information from pharmaceutical companies has caused real difficulties for patients, says Julia Schofield, consultant dermatologist at United Lincolnshire Hospitals NHS Trust.
'Communication has been poor, so often the first we will hear about it is a patient saying they can't get a product we have prescribed.'
She suggests another factor may be that coal tar products are less profitable than newer remedies - a skin cream called Dovobet, which contains steroids and vitamin D, costs the NHS £61.55 for 120g, compared to £16.38 for 100g of Carbo Dome. However, the manufacturers deny the price is a factor in the shortages.
In the meantime, Ray Jobling fears people may end up using stronger medication, such as topical steroid creams that have more side-effects, such as thinning the skin. 'Treatment options for psoriasis are not that good. When a treatment disappears, it really matters,' he says.

Read more: http://www.dailymail.co.uk/health/article-2572425/Coal-tar-shampoo-standby-psoriasis-eczema-So-HAS-trusted-skin-treatment-disappeared.html#ixzz2v14ypaES
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LottieP25 · 07-03-2014 11:18am

Can anyone recommend any good doctor or specialist that works for them? if ye could pm me that would be great, im not looking for medical advise just a suggestion of a doctor.

Im at my wits end at this stage, had to take the day off work as I can't move my arms today. It a constant battle between me and my doctor with the past 9 years, where i have been given every cream under the sun, it works for maybe two days, and then it gets sore, i try to manage it and then it gets infected and then im on anti biotics.

I've been on soooo many anti-biotics in the past year, i think todays lot will be about the tenth course. Surely there has to be another treatment other than cream, and anyone ive met thats the only suggestion they've given me.

It's getting to the point where im getting seriously depressed over it.

Sorry for the rant!

brevity · 07-03-2014 11:30am

EDIT: I'll send you a pm instead

Gael23 · 07-03-2014 12:57pm

LottieP25 wrote: »

Can anyone recommend any good doctor or specialist that works for them? if ye could pm me that would be great, im not looking for medical advise just a suggestion of a doctor.

Im at my wits end at this stage, had to take the day off work as I can't move my arms today. It a constant battle between me and my doctor with the past 9 years, where i have been given every cream under the sun, it works for maybe two days, and then it gets sore, i try to manage it and then it gets infected and then im on anti biotics.

I've been on soooo many anti-biotics in the past year, i think todays lot will be about the tenth course. Surely there has to be another treatment other than cream, and anyone ive met thats the only suggestion they've given me.

It's getting to the point where im getting seriously depressed over it.

Sorry for the rant!

Im just going to tell you what I was told by my fantastic GP and also a dermatologist over the years.
By the sound of it you have quite severe psoriasis. The best way to effectively deal with this is through using steroid based ointments. People have reasons for not wanting to use them but when things are that out of control is there an alternative?
You need to use the Dovobet every day, religiously, for up to a month until you get it under control and maybe even twice a day if its that bad. About 10 years ago when mine went out of control quite badly and the Dermatologist told me that he said I should be using a full 120g tube in 2 weeks.
Dovobet should be used sparingly but in your case I think you need to use it more intensively for a while. I know i'm suggesting cream like other people have done for you but in my own experience, that is what works best but how you use it makes a massive difference.
If you want to know more PM me.

LottieP25 · 07-03-2014 1:06pm

That's the frustrating thing, I'm using it religiously for the past then years, I've such severe stretch marks in the area's I'm using it that my skin just breaks cause it's gone so thin.

I don't think I'm being unreasonable asking my doctor to least leave me try alternative treatment, as it doesn't matter if I use the cream or not in certain areas it just doesn't work. I've tried every cream out there, I've exhausted this option and I'm at my wits end .

Sorry if I sound angry!! Just upset today!

Gael23 · 07-03-2014 1:19pm

Well in that case if I was in your position, I would be looking to be referred to a Dermatologist for more expert advice on treatment options. I think that a GP will generally stick to the classic steroid based creams etc.
I dont have alot of time for alternative remedies to be honest. They cost an arm and a leg and I dont find they work that well.

brevity · 07-03-2014 1:28pm

Aside from the PM I sent Lottie, another alternative is to start looking at your diet.

Try cutting out sugar, alcohol (wine definitely), smoking, pork, and things that are over-processed.

I posted this a while ago:

brevity wrote: »

...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.

Could be worth a shot if you are at your wits end.

rubadub · 07-03-2014 2:02pm

ryanf1 wrote: »

People have reasons for not wanting to use them but when things are that out of control is there an alternative?

Yes, UVB light treatment. Many will only prescribe it to very severe cases, but this is since its expensive as the dermatologists typically require patients to go to hospital, so you are paying for doctors/nurses time. My friend had very severe psoriasis and did not get UVB until a few years after having it, had a huge improvement. With the better weather you can get UVB treatment for free, go out at noon from work if you can and catch some rays.

brevity wrote: »

Try cutting out sugar, alcohol (wine definitely), smoking, pork, and things that are over-processed. .

I have given up none of these, not to say it will not help, I think it will, esp. smoking & alcohol. I am still off potatoes & tomatoes which I believe are the main culprits, along with alcohol, these are called out in the PDF too. The only minor flares I get are after drinking heavily. I will not give up booze, I can find plenty of alternative things to eat rather than potatoes or tomatoes, alcohol is a bit different in that respect, I am not going to switch to drinking 12 pints of tea!

My second most recent patch has nearly disappeared completely. My scalp is still quite red but otherwise not flaky or "weeping". I am nearly 2 months off the potatoes & tomatoes now. I eat sweet potatoes which are meant to be beneficial, not simply a benign substitute.

I do believe in the past the effect was compounded as I would typically eat chips & ketchup along with all the drink.

Call Me Jimmy · 07-03-2014 2:34pm

I would agree diet should be looked at. But outside of that, I would just like to repeat that apple cider vinegar mixed with a small bit of water has kept mine under control more than any combination of creams / moisturizers in 5-10 years. I'm using a UV Lamp too because of the damage I've done to my skin in the past through harsh rubbing and putting all sorts of concoctions on it.

I really can't recommend apple cider vinegar enough, it's even better than manuka honey. I use apple cider vinegar 'with mother', which means it is basically the unfiltered or processed version.

Again, just wanted to repeat because I don't have to worry about itchiness at all anymore, and the redness is almost completely gone.

rubadub · 07-03-2014 6:36pm

I keep forgetting about the cider vinegar, I even have a bottle already so will try it out.

michael999999 · 07-03-2014 6:51pm

Call Me Jimmy wrote: »

I would agree diet should be looked at. But outside of that, I would just like to repeat that apple cider vinegar mixed with a small bit of water has kept mine under control more than any combination of creams / moisturizers in 5-10 years. I'm using a UV Lamp too because of the damage I've done to my skin in the past through harsh rubbing and putting all sorts of concoctions on it.

I really can't recommend apple cider vinegar enough, it's even better than manuka honey. I use apple cider vinegar 'with mother', which means it is basically the unfiltered or processed version.

Again, just wanted to repeat because I don't have to worry about itchiness at all anymore, and the redness is almost completely gone.

What do you do with it?

Call Me Jimmy · 07-03-2014 6:53pm

I just throw AVC into a small container with a bit of water and dab it with a cotton pad then rub it gently on problem areas (around my nose). As I said, redness hasn't completely disappeared but the texture is MUCH better and no itchiness, I rarely have to think about it even.

There will be an odd sensation for a few seconds but then completely fine.

rubadub · 07-03-2014 6:55pm

he replied before, some also drink it. I have heard drinking vinegar will make the body more alkaline, you might have thought the opposite.

ryanf1 wrote: »

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

Call Me Jimmy wrote: »

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.

Edit -beaten to it!

Call Me Jimmy · 07-03-2014 6:58pm

From what I've read rubadub you're correct re: alkalising effect.

For me I drink ACV and freshly squeezed lemon juice in a glass of water every morning and it has a great effect on my body, especially my digestive system. If I don't drink it for a couple of days I have noticed myself feeling slower overall and more bloated for want of a better word.

rubadub · 07-03-2014 7:03pm

I was drinking it before, I sort of did it like a tequila, I would lash down a shot glass and instead of lemon I would just drink water right after it to wash off any taste. Though its not really that bad tasting.

LottieP25 · 07-03-2014 7:38pm

Thanks for all the replies folks.

I've been referred to a specialist as of today , and he put me on steroid tablets in the meantime as he said it's bad enough to warrent them atm.

Will definitely try the vinegar. Thanks so much.

Call Me Jimmy · 07-03-2014 7:39pm

Let us know how ye get on with the steroid tablets, was always interested to hear if they actually worked.

LottieP25 · 07-03-2014 7:41pm

Will do

michael999999 · 07-03-2014 8:05pm

Call Me Jimmy wrote: »

Let us know how ye get on with the steroid tablets, was always interested to hear if they actually worked.

They always cleared mine. But I'd just be worried about using them every time there was a flare up.

sneakysimon · 07-03-2014 8:09pm

steroids creams do work but for a while ie. dovabet dovanex the only way I found to clear it up 100% is light treatment at saint james hos in dublin. You can buy the uvb lights off the internet but if you are going to do this be very carefull with them as if you leave them on you 10 seconds to much the will give you really bad burns

sligoface · 07-03-2014 9:02pm

I sincerely believe stress and diet are the two main culprits. Mine goes crazy if I drink, which sucks because I love beer. Also goes bad if I am stressed or not sleeping enough.

I really think the diet outlined in Dr. Pagano's book will cure most cases but most people just can't stick to it. Usually only when it becomes utterly unbearable and you get truly desperate for relief will you be willing to cut out pizza, beer, sugar, fried foods,etc. It is hard because you feel like you can't enjoy your life the way you want and the way others can. Also it takes a bit more time and money to eat healthier. But you can't enjoy life when your skin is red, sore, itchy and flaking off so I think it is worth it. Even if you can't stick to it completely his book is well worth a read. Someone earlier was asking what the reasoning is behind te dietary restrictions, in a nutshell it is about avoiding foods which cause an acid reaction im your body and keeping toxins out of your system which is compromised by leaky gut, thinned intestinal walls.

As posted earlier, I find baths with epsom salts and dead sea salts to give great relief from flare ups, and I have a home UVB lamp I paid a lot of money for but people on here have posted much cheaper ways to put one together. Between that and the diet I had cleared it up considerably. Of course then I went back to old habits and it came back. Alcohol really flares it up and it can be very hard to avoid in Ireland especially. When my skin finally looks and feels good I want to go out and socialize and then I end up in a bad way again, it's like your skin gets a hangover that lasts for ages!

Back on the diet and a sober Paddy's for me!

michael999999 · 07-03-2014 9:24pm

rubadub wrote: »

I keep forgetting about the cider vinegar, I even have a bottle already so will try it out.

Stupid question here, but would cider vinegar do. Or does it have to be apple cider vinegar?

Gael23 · 07-03-2014 9:27pm

Steroid Tablets are only a very short term solution but for you I think it is appropriate. After that you should be able to tackle it with the Dovobet.
The uv therapy does work but it's 3 sessions a week and I'm not in a position to do that at the moment.
Been using dovobet and dovonex combined for close to a year now with great results.

LottieP25 · 07-03-2014 11:02pm

Yeah I wouldnt like to take them long term anyways, due to side effects and what not, but its definitely warranted at the moment. Im on them for the next two weeks, so will see how it is after that.

rubadub · 08-03-2014 12:26pm

sneakysimon wrote: »

You can buy the uvb lights off the internet but if you are going to do this be very carefull with them as if you leave them on you 10 seconds to much the will give you really bad burns

Timers are essential, some one posted before about getting burned in the hospital too. In the beginning you have to be very careful. I am up to 5mins on one patch I have, so 10 seconds more would not be much more % wise. In the beginning you are treating for 20 or 30seconds, so 10seconds more is indeed a huge amount more.

sligoface wrote: »

Someone earlier was asking what the reasoning is behind te dietary restrictions, in a nutshell it is about avoiding foods which cause an acid reaction im your body and keeping toxins out of your system which is compromised by leaky gut, thinned intestinal walls.

This may have been me, but I was trying to understand the reasoning behind his guidelines. He is totally against frying, but allows baking, no chemical or physical explanation is given. If he is against browning then you could be frying very gently, or baking until it is gone totally brown, so by not giving the true reasoning people might be inadvertently doing it wrong (i.e. overbrowning in an oven), or could be unnecessarily changing their cooking habits, e.g very gentle heat frying could be fine.

michael999999 wrote: »

Stupid question here, but would cider vinegar do. Or does it have to be apple cider vinegar?

Cider will be made from apples unless otherwise stated, so any cider vinegar you typically get will be apple cider vinegar. Technically you can make ciders made from other fruits, but it would say it, I don't think I have ever seen it. Dunno if normal vinegar would work, it is basically acetic acid at the end of the day, dunno what extra effect the apple gives, smells nicer than chipper vinegar anyway!

Mountainsandh · 08-03-2014 1:01pm

LottieP25 wrote: »

Yeah I wouldnt like to take them long term anyways, due to side effects and what not, but its definitely warranted at the moment. Im on them for the next two weeks, so will see how it is after that.

Lucky you, I'd love to do another course of oral steroids, apart from puvatherapy and Uvbs without tablets, they are the single most effective treatment I have ever had for the psoriasis. (haven't tried methotrexate and don't really want to)

I was prescribed them for psoriatic arthritis symptoms, but they had great effect on the skin pso too. And it was only 2 weeks treatment too !
The clearing of skin (not total of course, but great great improvement) lasted longer than with light therapy too, but strangely, it doesn't seem to be the case that it automatically clears skin for everyone either.

I suppose mine is just that intimately linked to inflammation.

Skin pso is bad enough at the moment (usual winter serious flare) to warrant something being done, but I am saving myself for treatment if and when arthritic symptoms flare up too, they're not too bad luckily right now.

Going to get apple cider vinegar today if I can find some, that'll be nice for scalp for a change from tar (so hard to find now).

It would be nice if it could tame down inflammation on hands, they're just killing me right now, this is the time of year when my skin is so vulnerable the least wind, cold, dry air, slight bumping or even brushing against anything (wall, furniture, objects) makes me bleed or breaks the skin into painful crevasses.

LottieP25 · 08-03-2014 5:33pm

Yeah in noticing the difference already, I can lift my arms today with less pain. So was able to go to work which is a bonus.

Colour wise it's no longer an very very vey angry red colour, it more an angry pink colour.

Tbh I'm beginning to think that maybe stress does play a huge factor, cause I was so stressed all week about it and calmed down after visiting the doctor yesterday when I got the tablets. So maybe there's a connection - I doubt the tablets can be this fast working

Gael23 · 08-03-2014 7:37pm

Stress does without doubt make it worse but those steroids should work quickly. When you finish them I would give the creams another go to keep it down as much as possible.

Mountainsandh · 09-03-2014 12:04am

I don't believe in the stress link very much. Hardly, in fact.
I think maybe the connection might be that if you're more stressed out, you might be more prone to inflammation ? don't know.

It's the steroids working already imo, when my kids had asthma attacks previously, I was told by the gp, and I was able to see for myself, how quick the effects were. Within a few hours there was a significant improvement.

Don't know if any of you read the Inspire site ?
It is a discussion forum exclusively for psoriasis sufferers and family, but it does branch out into other things too.
It's American initially, so a lot of very heavy meds, very extreme diets and hyperbolic miracle cures, etc... but I keep an eye on it, to keep up to date with possible trials and solutions.

I was reading this discussion tonight, this fellow reckons pso is connected to the production/reaction to antioxidants. Don't really understand the ins and outs of it, but he advocates a three pronged approach :
~black seed oil
~5-Loxin (Boswellia)
~ Heparin

I would be a bit weary of the heparin, which is an anti-coagulant, but it is available over the counter for vein problems, hematomas, etc... so I would chance it, sparingly, for my part.

I think I'm going to try this. Black seed oil is a bit expensive, so I have to wait a bit to start, but I think it's worth giving it a go.

Interestingly too, I think one person in the discussion, or someone in one of the links, recommends the use of apple cider vinegar too.

http://www.inspire.com/groups/talk-psoriasis/discussion/three-pronged-approach-to-ridding-yourself-of-psoriasis-forever/?reply_sort=asc&page=3#replies

Anyone tried that 3 pronged approach before ?

Psoriasis

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