Psoriasis

Haven't posted here in a while but doing really well. Got let go from my job a month ago so the stress of that didn't help but got through it.
Was back with Prof Kirby recently too and that went fine, dont have to go back for 6 months now which is the longest ever.

Yes Enstallar is the same active drug as Dovobet, never used it myself though. I find Protopic brilliant, my face has never been so clear.

Is protopic prescription only? Never used it

On the dovobet about a month now, 99% better. Starting to cut down to every 2nd or 3rd day and avoiding spots that have dissapeared 100%.

Still have it in my scalp however (the only place i havent used the dovobet,obviously ) ive been on the elave shampoo for over a year, no change. Feels like little lumps/cuts on the head and anytime i scratch or remove a tshirt/hoody im covered in flakes.

Starting to irritate me as i get a bit self concious sometimes, can anyone recommend me something over the counter that might help?

When i was getting the dovobet i asked the gp about the scalp and he pretty much said keep using the elave... I should have questioned more but i was just happy to get the dovobet as i knew it worked for my skin in the past so left it...

Ive also used betamouse (sp?) In the past with no success. I keep my hair short, shaved back and sides and there is a noticable rash all around the head.

Any recommendations would be appreciated

Thanks

Anyone tried the new delivery method of Dovobet called Enstilar (http://enstilar.com/) same ingredient... but apparently soaks better and need less..
My doc just gave me a script for it to try.

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

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 ! )

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 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

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

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

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.

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.

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

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 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 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.

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 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.