Psoriasis

Anyone using Enstilar here?

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 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!

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

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..

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.

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

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?

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 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 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!

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

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

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