Psoriasis

hbhook

wonga77 wrote: »

Never heard of it before, sounds interesting, its a spray foam, is it not very messy to apply?

No it's not messy if you shake it for a few seconds as the instructions say and which I didn't follow at first! When I first heard of it I did a bit of research and what I found made me think I'd be going back for a new prescription within 3/4 weeks having read people's reviews. But actually, I'd say the can I have will be lasting for a long time yet and I have it a month.

fionny

hbhook wrote: »

No it's not messy if you shake it for a few seconds as the instructions say and which I didn't follow at first! When I first heard of it I did a bit of research and what I found made me think I'd be going back for a new prescription within 3/4 weeks having read people's reviews. But actually, I'd say the can I have will be lasting for a long time yet and I have it a month.

Just got my script filled... goes on nicely, feels like dry ice when you spread it :P

small bit felt like it went a long way. Dries in quicker then the gel / ointments too which is a big plus in my eyes.. will see if it works as quick,

Mountainsandh

Just curious to know if anyone here has renal/kidney disease associated with psoriasis ?

My last 2 blood tests show a "moderate" kidney impairment, and I was just reading online a few studies. Some show a possible link, explanation would be the state of inflammation leads to kidney impairment, others are not so conclusive. https://www.psoriasis.org/media/press-releases/kidney-disease-more-likely-moderate-severe-psoriasis
(have to add that everything else is normal, no diabetes, cholesterol all good... it's just the eGFR and creatinine levels that are "moderate" Stage 3 CKD as far as I can see).

I'm due to visit rheumatologist and this latest blood test was in a view to do that. Obviously now that I'm making the decision to go try and get a diagnosis for a normally pretty obvious psoriatic arthritis, I'm not flaring :rolleyes: Apart from a little bit of a knee problem and some usual hand joints discomforts, and still some lower back pain but that's never far away, psoriasis is doing very well, hands are very presentable and less swollen than usual.

Anyway about the kidney thing, just wondering if that was an issue for anyone here in getting treatment like methotrexate etc... ? The whole point of going to rheumy is to finally get treatment, after years of suffering it out and taking Nsaids, so if kidney function rules it out, I'd like to be prepared in my head, rather than be really disappointed.

If I get to be seen soon, would the fact that I'm not flaring be an issue for possible diagnosis ? (I could always binge on pizza and beer a week or so before appointment but would rather not ! )

Martina1991

Mountainsandh wrote: »

Anyway about the kidney thing, just wondering if that was an issue for anyone here in getting treatment like methotrexate etc... ? The whole point of going to rheumy is to finally get treatment, after years of suffering it out and taking Nsaids, so if kidney function rules it out, I'd like to be prepared in my head, rather than be really disappointed.

There are a number of published articles that highlight the risk of renal impairment in patients with psoriasis.
e.g.
http://www.sciencedirect.com/science/article/pii/S0923181115001127
http://www.bmj.com/content/347/bmj.f5961.long
http://onlinelibrary.wiley.com/doi/10.1111/bjd.13599/full

It may be due to the use of nephrotoxic drugs like Methotrexate that you've mentioned (i.e. drugs that cause kidney damage).

The key is to achieve the optimal therapeutic dose of medication for you that doesn't cause more damage.

Mountainsandh

Thanks Martina, I saw a few alright. I have never had any harder treatment than Nsaids, so really whatever affected my kidneys must have been ordinary painkillers or the inflammatory nature of psoriasis. I actually saw one study (New Zealand or Australia I think) which compared CKD in sufferers who had and had not received methotrexate and other pointed treatments, I think the conclusions were that severity of psoriasis or PA was more likely to lead to CKD than treatments.

So I was a bit worried about treatment when I wrote the post above, but now I think maybe if I had been encouraged into earlier treatment I might have had less chances of renal impairment.

I'll trust a rheumy to weigh out pros and cons for me if it comes to it, but I'm a bit annoyed at my gp now.

Call Me Jimmy

Does anyone know is ketaconazole cream available on prescription here? I've never tried it and im back out of options again, heard its good

rubadub

Call Me Jimmy wrote: »

Does anyone know is ketaconazole cream available on prescription here?

I see one on a UK site I have used. Might be available here too. You might be looking for stronger

http://www.expresschemist.co.uk/Daktarin-Intensiv-Cream-15g.html

Budawanny

Call Me Jimmy wrote: »

Does anyone know is ketaconazole cream available on prescription here? I've never tried it and im back out of options again, heard its good

its available as Nizoral Cream

brevity

https://twitter.com/talkhealth/status/928282609188331520

More info here:

Professor Anthony Chu, former senior consultant at Imperial Healthcare Trust, and Hammersmith and Ealing hospitals in London, said: ‘I have been hugely impressed by the results - in some cases the improvements were quite miraculous.

‘Nearly all the patients in our trial experienced some benefit, but 60 per cent of them experienced significant improvements of between than 50 and 100 per cent.

‘In terms of well-being, almost half said their quality of life had improved by between 76 and 100 per cent, and we recorded no negative side-effects.

‘So to have a topical treatment that works in patients for whom other topicals have failed is absolutely fantastic. In some cases, patients who had been suffering from psoriasis for years, symptoms went away almost completely.

‘This is something that has not been there before, and for patients who have not had positive experiences with the usual drugs it offers new hope.’

Professor Chu has no financial interest in Soratinex.

Psoriasis is an immune condition that speeds up the skin replacement process, meaning cells that normally take 21 to 28 days to replace are actually produced in a few days. This build-up of cells results in raised ‘plaques’ which can become inflamed, flaky and painful . It can occur on all parts of the body. Almost 2 million people in the UK suffer from the condition.

Most sufferers are treated with topical creams containing steroids. Over time, these can damage the skin and in some cases are absorbed into the body, causing side effects such as changes in blood pressure and decreased growth in children.

Dr Benedetta Brazzini, who conducted the trial with Professor Chu, described the results as ‘amazing’.

She added: ‘To begin with I was a bit sceptical and thought Soratinex was something that would either not work, or at best would simply have the effect of being a good moisturiser.

‘We were pleasantly surprised, especially when you consider that in this and previous trials there has been no record of any significant side effects. The patients were very grateful and very happy with the results.’

Soratinex, distributed in Europe by the Czech-based company FRANKL Pharma, is available in Australia, New Zealand, Germany, the Czech Republic, Slovakia, Poland and Hungary, is being introduced to the UK to co-incide with Psoriasis Awareness Week.

The treatment is designated a ‘Medical Device’ under EU legislation and can be bought online at https://www.franklpharma.co.uk without a prescription. Sets, expected to last patients with mild to moderate symptoms between one and three months, retail at £76.50 for small and £121.05 for large.

Http://www.talkhealthpartnership.com/talkpsoriasis/articles/soratinex.php

wonga77

Interesting, seems expensive but Id have no issue paying for something that works. Might read up a little more on it. Wonder if the effects are long or short term

Call Me Jimmy

I will be trying it despite skepticism (based on the fact that the ingredients don't seem anything unusual) but im a bit desperate at the moment for something. Will report back

echo beach

What makes me skeptical, in addition to the hearty price tag for apparently fairly simple ingredients, is why it is licensed as a medical device rather than as a medicine.

rizzee

How's everyone's skin with the change in weather? 18 months after my last light treatment and still over 95% clear.

I have gotten a full arm tattoo 6 months ago are there are all blemishes of psoriasis that come and go on it but nothing major. Using a dab of dovobet on it every couple of days.

hbhook

Good for you.
I got a bit of a flare-up on the face last week but I've treated it since then. I'm not sure it was the weather though.

Mountainsandh

Call Me Jimmy wrote: »

I will be trying it despite skepticism (based on the fact that the ingredients don't seem anything unusual) but im a bit desperate at the moment for something. Will report back

The cream looks like they put the usual salycilic acid, paraffin, and zinc, and then they carefully added a little bit of jojoba oil, a dash of almond oil, and then they went : "ah sure what the heck, just fire it all in !" and emptied an old herbalist stash into the witches' cauldron.

rubadub

Mountainsandh wrote: »

The cream looks like they put the usual salycilic acid, paraffin, and zinc, and then they carefully added a little bit of jojoba oil, a dash of almond oil, and then they went : "ah sure what the heck, just fire it all in !" and emptied an old herbalist stash into the witches' cauldron.

hahaha, exactly what I thought. Make it look like a crazily complicated mixture that real thought has gone into.

Alarm bells rang when I saw the first too in the first product listed.

SORATINEX Skin Care Gel

Ingredients

Alcohol, Sodium Lauryl Sulfate, Cocamidopropyl Betaine, Triethanolamine, TEA Lauryl Sulfate, Salicylic acid, Carbomer, Glycolic acid, Cocamide DEA, Citric acid, Tetrasodium EDTA, Methylchloroisothiazolinone and Methylisothiazolinone, Aqua purificata.

wonga77

What do you think rubadub? You are one of the most clued-in contributors here, worth a shot or another expensive marketing gimmick?

Mountainsandh

Well the alcohol is definitely a big put off for me anyway, especially in the winter when I've got lots of little weals on my hands courtesy of the plaques.
Maybe in summer.

hbhook

Does anyone here have any experience with protopic?. I'm using 0.03. I think it's causing me to have mini break-outs. I'm pretty sure it's not any facewash or moisturiser I'm using.

wonga77

Call Me Jimmy wrote: »

I will be trying it despite skepticism (based on the fact that the ingredients don't seem anything unusual) but im a bit desperate at the moment for something. Will report back

Did you ever try it?

Gael23

hbhook wrote: »

Does anyone here have any experience with protopic?. I'm using 0.03. I think it's causing me to have mini break-outs. I'm pretty sure it's not any facewash or moisturiser I'm using.

I use the stronger 0.1% and find it great. My GP tried to switch me to the 0.03 but it didn’t work. Im on injections now but I’ll always have a tube of Protopic to hand for my face.

Call Me Jimmy

wonga77 wrote: »

Did you ever try it?

Yup, I knew I was being stupid but I tried it, not for long mind, maybe a week. Don't waste money

wonga77

Call Me Jimmy wrote: »

Yup, I knew I was being stupid but I tried it, not for long mind, maybe a week. Don't waste money

That's a pity, always hoping there's some miracle cure around the corner. Did it make any impact at all?

hbhook

Gael23 wrote: »

I use the stronger 0.1% and find it great. My GP tried to switch me to the 0.03 but it didn’t work. Im on injections now but I’ll always have a tube of Protopic to hand for my face.

Are you topping up with it or do you use it regularly? I might try the 0.1. Cheers.

Mind you, I might just be getting used to the colder weather as a previous poster mentioned as well as trying to figure out a routine. I'd certainly look worse without the protopic. I guess the doc prescribed the 0.03 as it's primarily for eczema.

Gael23

hbhook wrote: »

Are you topping up with it or do you use it regularly? I might try the 0.1. Cheers.

Mind you, I might just be getting used to the colder weather as a previous poster mentioned as well as trying to figure out a routine. I'd certainly look worse without the protopic. I guess the doc prescribed the 0.03 as it's primarily for eczema.

When I was prescribed it first I used it regularly to keep my face clear but now I’m on Enbrel I only use it as a top up for stubborn bits. Before that I used it twice a week and it made a huge difference.

siblers

https://www.express.co.uk/life-style/health/888786/Psoriasis-cure-Childs-Farm-moisturiser

Basically a guy who had severe psoriasis used this moisturiser and it worked quite well for him

I wonder is this just a marketing gimmick, you can get Child's Farm moisturiser in Boots for around €6.00

I may pick up a bottle for the craic but I don't see how it will help

brevity

I’ve used it and it did nothing for me.

I’ve always believed that psoriasis can only really be managed from the inside out. Lotions and potions are a temporary relief. I do think probiotics have a great chance of working and will be trying them out

Due to a number of reasons I let my Humira injections lapse and I’ve a large patch developing on my left leg so I’ve gone back to the dermatologist. Had to get blood tests done before I can go back on the Humira which is frustrating but entirely my own fault. I won’t be making the same mistake again.

Gael23

brevity wrote: »

I’ve used it and it did nothing for me.

I’ve always believed that psoriasis can only really be managed from the inside out. Lotions and potions are a temporary relief. I do think probiotics have a great chance of working and will be trying them out

Due to a number of reasons I let my Humira injections lapse and I’ve a large patch developing on my left leg so I’ve gone back to the dermatologist. Had to get blood tests done before I can go back on the Humira which is frustrating but entirely my own fault. I won’t be making the same mistake again.

You started Humira around the same time as I started Enbrel. I remember one of the first things you said to me is that once you go on biologics there is no going back and there really isn't. Do what you need to do to get back on it, you know what it will do for you.

brevity

Gael23 wrote: »

You started Humira around the same time as I started Enbrel. I remember one of the first things you said to me is that once you go on biologics there is no going back and there really isn't. Do what you need to do to get back on it, you know what it will do for you.

Yea. I suppose at the time the 140€ every month was tough to maintain. Was trying to buy a house too so every penny counted.

It's a bit daunting being on the drug too. The dermatologist's words when referring to Humira were "It's not cornflakes" and then proceeded to up the dose to every week as the patch on my leg wasn't shifting. I had to go to south doc one time and the doctor asked me was I on any medication. I mentioned the dose of Humira and I could tell it stunned her quite a bit.

That being said I couldn't go back to the way I was. It was torture.

rubadub

While searching sauerkraut and psoriasis I found this interesting old journal from 1956

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1979927/?page=1

The first section says they had patients drinking 10% lactic acid which cleared their psoriasis, but it came back but a way around it was to eat foods high in lactates (e.g. sauerkraut) to keep it ongoing.

The theory you usually read is that its the probiotics in these foods that helps with psoriasis and the immune system etc. Many making these will do a long ferment to create more probiotics, but coincidentally that usually results in a lot more lactic acid too. I had been making my own yogurt and left it 24hrs and it was far more acidic than if done for say 6 hours, I like the tartness. So maybe it is more to do with the lactic acid in them, or could well be a combination.

Lactic acid is used in winemaking so you can easily get bottles of foodgrade stuff online, amazon have 80% stuff that I am going to try, obviously this needs to be diluted down. It is also used as a chemical peel type thing for skin, in searches for lactic acid and psoriasis you will see people treating skin topically with lactic acid, more than you will find people drinking it.