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Psoriasis

Sykk

Hey all,

So I have been to around 4 different doctors over a skin condition I've had for around a year. 2 didn't know and 2 said I have psoriasis. It's very annoying, looks bad, and has a chance of spreading...

I have it on some parts of my head and the doctor told me there is no cure for it, it's only containable.

I have done some looking up on the web about cures, and some people say it's not cureable, some say it is. I have yet to go to a dermatolisist (I've one booked) or a chinese herbalist.

Does anyone else have this skin problem? If so what are you taking for it? And does anyone know if it's actually cureable or not.

Thanks in advance.

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uli84

Anyone using Enstilar here?

Gael23

uli84 wrote: »

Anyone using Enstilar here?

It’s the same drug as Dovibet

Shoneen

So as a follow on to my earlier post (I went off Humira because of Covid and history of bad lungs) - I've now been off all prescriptions for about 4 weeks and trying to manage through diet (sauerkraut, kombucha, turmeric, vitamin D etc.) and non-prescription creams. I'd love to say that its worked for me, but at the moment my psoriasis is off the charts and only getting worse.

I normally see a HSE dermatologist a few times a year, but at the moment I haven't got any confirmation on when I might be able to get another appointment. The way things are, I decided I'd better go private, but I rang a couple of dermatologists' private clinics and they were both late December for an available appointment. One of the secretaries told me all the dermatology clinics are booked up.

Does anyone know of any private dermatologists in the Dublin/Kildare area that might have appointment slots in the next month?

Misguided1

Shoneen wrote: »

So as a follow on to my earlier post (I went off Humira because of Covid and history of bad lungs) - I've now been off all prescriptions for about 4 weeks and trying to manage through diet (sauerkraut, kombucha, turmeric, vitamin D etc.) and non-prescription creams. I'd love to say that its worked for me, but at the moment my psoriasis is off the charts and only getting worse.

I normally see a HSE dermatologist a few times a year, but at the moment I haven't got any confirmation on when I might be able to get another appointment. The way things are, I decided I'd better go private, but I rang a couple of dermatologists' private clinics and they were both late December for an available appointment. One of the secretaries told me all the dermatology clinics are booked up.

Does anyone know of any private dermatologists in the Dublin/Kildare area that might have appointment slots in the next month?

Try these guys

https://www.beaconhospital.ie/our-services/dermatology/

I have been there for an appointment unrelated to Psoriasis but they were brilliant and I got an appointment within a couple of weeks. If you live near Dublin, tell them you can be available at short notice if there is a cancellation. They don't like empty appointment slots

Shoneen

Misguided1 wrote: »

Try these guys

https://www.beaconhospital.ie/our-services/dermatology/

I have been there for an appointment unrelated to Psoriasis but they were brilliant and I got an appointment within a couple of weeks. If you live near Dublin, tell them you can be available at short notice if there is a cancellation. They don't like empty appointment slots

Cheers, thanks for that Misguided - I haven't even had a response from the last couple of Dermatologists I've phoned regarding appointments so I'll definitely give them a go. It seems there's a lot of people out there with skin problems!

echo beach

Gael23 wrote: »

It’s the same drug as Dovibet

Enstilar is the same drug as Dovobet but the formulation does seem to give better results for many patients.
It would need to at the price which isn’t helped by having to pay VAT on any medicines not taken by mouth.

rubadub

uli84 wrote: »

Anyone using Enstilar here?

I was prescribed it but did not get it as I did not want to go on steroids without trying other options first

rubadub wrote: »

I was prescribed steroids but did not get them, I was at the GP for a different reason and he gave me a script. Also for the price of 2 tubes of steroids I was able to buy 2x36W UVB bulbs and the reflector to go with them (still have to get the reflector)

I still have to get that reflector, it cleared up so much I was in no rush, it is getting a bit worse now though, diet & drinking is worse and lack of sun I guess.

Still glad I never went on the enstilar

brevity

uli84 wrote: »

Anyone using Enstilar here?

The cold spray is a great relief. It works really well for a bit but then it the psoriasis just gets used to it. Kinda like the borg.

Amzie

rubadub wrote: »

I was prescribed it but did not get it as I did not want to go on steroids without trying other options first

I still have to get that reflector, it cleared up so much I was in no rush, it is getting a bit worse now though, diet & drinking is worse and lack of sun I guess.

Still glad I never went on the enstilar

How does the reflector work can i ask? I'm using enstilar and it's not working. Also tried dovobet..

hbhook

Ya Enstilar up to a point on problem areas. But it still works on minor breakouts.

rubadub

Amzie wrote: »

How does the reflector work can i ask?

I should have really said the light fitting, its for narrowband UVB bulbs. You can buy the philips bulbs but then need a unit to fit them into. The ones I found were big reflectors that were on websites for hydroponic growing (most likely sold to cannabis growers!)

For the smaller philips bulb you can get particular office lamps which have the correct fitting and electrical ballast in them. Like most long flourescent bulbs would need a ballast, the twist in energy saving lightbulbs have the ballast built into the base.

You can buy ready kitted out UVB bulbs in correct fittings but they usually cost a lot more. They can have timers built in.

This is the one I was after

you can see a more expensive commercial unit here which comes with the correct bulbs.
http://medycznelampy.pl/index.php?p=1_69_7.-72W-UVB-LAMP-VITILIGO-ECZEMA-PSORIASIS-ANCE-VITAMIN-D-TESTER-MED-379-EUR

Not everybody repsonds to UVB and you should be asking your doctor if thinking about it, there are very strict guidelines to using these, people even end up with severe sunburn when its being done in hospitals. I find it really odd that doctors do not give the small units out to people to try, to see if they respond, they seem to just send you for the full on hospital treatment. I got the small bulb so knew it works for me. Even when I get the large unit working the small one would be handy for certain spots.

dahat

Any users of methotrexate & enbrel have any issues with green tea?

rubadub

rubadub wrote: »

I have a new light on the way, 2x36W UVB narrowbands were €147.05 including delivery for the pair, they are philips brand and I would stick with them instead of generics. Then a very basic light fitting that takes the 2 bulbs was €63.95 including delivery. So bang on €211 for the lot which I was very pleased with.

finally got around to ordering that light fitting again, the first place let me down.

www.amazon.es had it

EUR 63,94
delivery EUR 9,76
total EUR 73,70

https://www.amazon.es/Mammoth-Neon-Reflector-2x36W/dp/B00KVJYTJI

BohsCeltic

I am waiting over 2 years to see a dermatologist. Have it pretty much under control, my feet being the worst but i try walk as much as possible which helps. Use Dovobet and Paraffin gel.

Johnny Derpp

I just finished paganos book and have decided to try to restrictive diet, but there is so much to cut out.

Can anybody recommend a good quality allergy test in the dublin area so I can get a head start?

Fionn

Whats involved in the restrictive diet?

I've been on an Intermittent Fasting diet (including Low Carb/High Fat) since Christmas last and while it has had great benefits for my general health (Diabetes) it hasn't had any impact good or bad on my psoriasis. I'm on whats called OMAD one meal a day, I've read that some people's skin conditions cleared up, but not for me.

Misguided1

Johnny Derpp wrote: »

I just finished paganos book and have decided to try to restrictive diet, but there is so much to cut out.

Can anybody recommend a good quality allergy test in the dublin area so I can get a head start?

Try the Fitzwilliam Food Test https://www.fitzwilliamfoodtest.com/

It's pricey though. I tried it a few years ago and virtually every food was eliminated:D I didn't have the will power to stick with it in the end.

Johnny Derpp

Fionn wrote: »

Whats involved in the restrictive diet?

Basically pagano identifies alot of foods that can potentially cause inflammation. It's so wide ranging that you would end up eating nothing.

rubadub

rubadub wrote: »

https://www.amazon.es/Mammoth-Neon-Reflector-2x36W/dp/B00KVJYTJI

I am very happy with that light fitting, I was worried it might be a bit dodgy & cheaply made, the ballast section is very good build quality, it takes a standard PC monitor type cable. The reflector bit is flimsy but fits well and is lightweight so does the job. It can stand upright on a table and would be easy to modify if you are handy at diy type stuff.

I am always unsure if we have many "lurkers" on here who may not ask questions. I was using a smaller light before (and still will) and so well aware that this new one would be more powerful and more importantly that it would be so large that areas usually untreated would now be exposed to the light.

When you start first you start off very low times and build up time, so I was aware of this and just did 2mins on my arm and got very light sunburn on the areas which are usually not treated. You are usually aiming to get this very light reddening, a total newcomer would certainly not do 2mins. The areas I would usually treat for up to 10mins with the smaller bulb were pure white as the 2min did nothing. So it is like starting afresh again with the large light.

Fionn wrote: »

I've been on an Intermittent Fasting diet (including Low Carb/High Fat) since Christmas last and while it has had great benefits for my general health (Diabetes) it hasn't had any impact good or bad on my psoriasis.

have you tried full fasts like 24-48+hrs, I am going to try them again, I got great results earlier this year but am not sure what was most beneficial. A poster in this thread years ago got great results from fasting, he reckoned it was related to candida and eliminating sugar would help.

Fionn

Yes I've done 48 hour fasts a few times, it's not as difficult as it seems, you just have to be in the right frame of mind!
Every day I do a 24 hour fast as I only eat once a day, one meal every 24 hours so only water in between.
It's done wonders for my health but unfortunately not my psoriasis, on the food thing, I'm on a low carb diet but still have some food that has grain in it, so might try cutting that and see if theres any improvement.

I'm also interested in the light therapy, during the Summer I got very tanned where the P wasn't but the sunlight had improved it somewhat.

Gael23

Fionn wrote: »

Yes I've done 48 hour fasts a few times, it's not as difficult as it seems, you just have to be in the right frame of mind!
Every day I do a 24 hour fast as I only eat once a day, one meal every 24 hours so only water in between.
It's done wonders for my health but unfortunately not my psoriasis, on the food thing, I'm on a low carb diet but still have some food that has grain in it, so might try cutting that and see if theres any improvement.

I'm also interested in the light therapy, during the Summer I got very tanned where the P wasn't but the sunlight had improved it somewhat.

It’s a temporary improvement though. Did you get any digestive issues after the fast?

Fionn

Initially yea,
but i've been doing it since last Christmas, so the system has adjusted, there is some problems with certain foods like some greens, cabbage, broccoli, sprouts and the like they tend to ferment in the gut that can produce amounts of gas that need to be vented outdoors if possible

rubadub

Fionn wrote: »

Initially yea,
but i've been doing it since last Christmas, so the system has adjusted, there is some problems with certain foods like some greens, cabbage, broccoli, sprouts and the like they tend to ferment in the gut that can produce amounts of gas that need to be vented outdoors if possible

You can ferment them first yourself! Earlier this year I got huge improvements, I did too many things at once so cannot figure out which was the most beneficial or if it had to be a combination.

I cut down on overall calories, cut down on bread and sugar to some degree, was doing some fasting, eating sauerkraut, using the UVB light and various creams (no steroids) and drinking a lot less alcohol.

It has steadily got worse as I gave up most some of the things I was doing, or not doing to the same extent. I could see myself keeping them up again though, while there is not a hope in hell of me sticking to the Pagano rules!

Gael23

Fionn wrote: »

Initially yea,
but i've been doing it since last Christmas, so the system has adjusted, there is some problems with certain foods like some greens, cabbage, broccoli, sprouts and the like they tend to ferment in the gut that can produce amounts of gas that need to be vented outdoors if possible

Did you get loose motions or anything?

[Deleted User]

Has anyone tried cerave psoriasis facial cleanser? Just seen it online and wonder should I give it a try

Fionn

Gael23 wrote: »

Did you get loose motions or anything?

I didn't transition overnight, did it on a gradual basis (few months) so there wasn't any unpleasant side effects!

rubadub

That pharmacy in Donegal has a sale again, ending tonight dovonex 20.82, free delivery if over 38euro

https://www.inishpharmacy.com/p/dovonex-psoriasis-ointment-60gm/a18725

cocois is 16.99
https://www.inishpharmacy.com/p/dovonex-psoriasis-ointment-60gm/a18725

wonga77

They have very good prices on most things to be fair, you can get mach 3 blades for 6 quid or something, far cheaper than I've ever seen them in store

Delldweller

Just need to say a big thank you to the people who post here
Advice was invaluable
After years of this psoriasis and lots of different treatments I’m starting on a biologic tomorrow
Advice from posters here was the nudge in right direction
I’ll post how it goes.
Thanks again

Peppsi

Chacha97 wrote: »

Has anyone tried cerave psoriasis facial cleanser? Just seen it online and wonder should I give it a try

Since using the normal cerave moisturiser (in the pot) and their hydrating cleanser, they both seem to be working for me. They can be picked up in Boots.