Psoriasis

rubadub · 22-10-2020 6:59pm

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 · 25-10-2020 8:47pm

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

rubadub · 05-11-2020 6:06pm

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 · 14-11-2020 9:55pm

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 · 16-11-2020 12:11pm

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 · 16-11-2020 2:21pm

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 · 16-11-2020 2:35pm

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 · 16-11-2020 7:56pm

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 · 19-11-2020 12:02am

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 · 19-11-2020 12:21am

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 · 19-11-2020 12:22am

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 · 19-11-2020 12:29am

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 · 19-11-2020 11:12am

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 · 19-11-2020 4:00pm

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?

Chacha97 · 19-11-2020 4:06pm

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

Fionn · 20-11-2020 2:15am

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 · 30-11-2020 9:18pm

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 · 30-11-2020 10:07pm

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 · 07-12-2020 2:20am

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 · 07-12-2020 2:46am

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.

Misguided1 · 09-12-2020 5:10pm

Delldweller wrote: »

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

Good luck - hope it works for you!

eeloe · 10-12-2020 3:41pm

Delldweller wrote: »

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

Keep us updated, best of luck.

When the skin starts to clear it’s genuinely life changing.

Gael23 · 10-12-2020 4:22pm

Delldweller wrote: »

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

Be aware that Biologics are not a miracle and take time to work so you need to be patient. It will change your life though.

What one specifically are you going on?

Delldweller · 19-12-2020 2:16pm

Gael23 wrote: »

Be aware that Biologics are not a miracle and take time to work so you need to be patient. It will change your life though.

What one specifically are you going on?

It’s called Guselkumab. Two weeks now and I’m already seeing results
I always get a bad flare up at Christmas which I attributed to wine and chocolate
Interesting couple of weeks ahead
Thanks again Guys

senordingdong · 19-12-2020 3:13pm

Delldweller wrote: »

It’s called Guselkumab. Two weeks now and I’m already seeing results
I always get a bad flare up at Christmas which I attributed to wine and chocolates

So will the guselkumab help your body process the wine and chocolate?

brevity · 19-12-2020 4:06pm

Delldweller wrote: »

It’s called Guselkumab. Two weeks now and I’m already seeing results
I always get a bad flare up at Christmas which I attributed to wine and chocolate
Interesting couple of weeks ahead
Thanks again Guys

Tremfya?

I’m on that too. Taking a lot longer to clear my skin than other biologics I have been on.

Delldweller · 20-12-2020 8:24pm

senordingdong wrote: »

So will the guselkumab help your body process the wine and chocolate?

I don’t think so.
Normal body function will process them
And hopefully the biologic will just sort the psoriasis. I’m not a Doc
D

Delldweller · 20-12-2020 8:26pm

Delldweller wrote: »

I don’t think so.
Normal body function will process them
And hopefully the biologic will just sort the psoriasis. I’m not a Doc
D

Tremfya is the company name
D

eeloe · 22-12-2020 12:13am

Delldweller wrote: »

Tremfya is the company name
D

The company name is Janssen

They make Stelara also, which is the biologic I’m on.

Chacha97 · 30-12-2020 1:08pm

I seem to be having bit of an issue around my ear. It seems to be like where my ear joins my head! And along hairline above ear. At first I was thinking scalp psoriasis but seems to be a bit different? Granted I shouldn't be doing this but sometimes I pick to see and it seems like scalp psoriasis but then kinda oozes and sometimes so a bit at a loss. Should I just try capasal shampoo? Nizoral or dermalex

Sorry meant to add i do suffer from psoriasis. I have it on elbows, back, leg and scalp and a bit on forehead!

khalessi · 30-12-2020 1:14pm

Chacha97 wrote: »

I seem to be having bit of an issue around my ear. It seems to be like where my ear joins my head! And along hairline above ear. At first I was thinking scalp psoriasis but seems to be a bit different? Granted I shouldn't be doing this but sometimes I pick to see and it seems like scalp psoriasis but then kinda oozes and sometimes so a bit at a loss. Should I just try capasal shampoo? Nizoral or dermalex

Sorry meant to add i do suffer from psoriasis. I have it on elbows, back, leg and scalp and a bit on forehead!

Could try it along with cream. I sometimes put dollops of doube emollient on back of my ears when they are irritating me.

wonga77 · 30-12-2020 8:43pm

Chacha97 wrote: »

I seem to be having bit of an issue around my ear. It seems to be like where my ear joins my head! And along hairline above ear. At first I was thinking scalp psoriasis but seems to be a bit different? Granted I shouldn't be doing this but sometimes I pick to see and it seems like scalp psoriasis but then kinda oozes and sometimes so a bit at a loss. Should I just try capasal shampoo? Nizoral or dermalex

Sorry meant to add i do suffer from psoriasis. I have it on elbows, back, leg and scalp and a bit on forehead!

The shampoos you mention dry my scalp out terribly. I found just using hot water for a while helped a lot. I also stopped eating white bread and for some reason my scalp cleared completely, stayed everywhere else mind...

Looptheloop30 · 31-12-2020 2:55pm

Are those on biologics able to get 'the jab'?

Gael23 · 31-12-2020 5:24pm

Looptheloop30 wrote: »

Are those on biologics able to get 'the jab'?

Yes you can and should

eeloe · 02-01-2021 9:42pm

Looptheloop30 wrote: »

Are those on biologics able to get 'the jab'?

Once it’s not a live version of a vaccine you should be fine.

dahat · 24-02-2021 4:50pm

Are we classed as being immune compromised in terms of COVID vaccination?

Gael23 · 24-02-2021 4:51pm

dahat wrote: »

Are we classed as being immune compromised in terms of COVID vaccination?

It depends what medication you are on really

dahat · 24-02-2021 5:09pm

Gael23 wrote: »

It depends what medication you are on really

Enbrel & MTX combo?

Gael23 · 24-02-2021 6:58pm

dahat wrote: »

Enbrel & MTX combo?

Yeah then your in group 7.

dahat · 24-02-2021 7:01pm

Gael23 wrote: »

Yeah then your in group 7.

Thanks.

The DayDream · 24-02-2021 7:15pm

I've suffered with psoriasis for over 20 years now, it's migrated around different parts of my body, the worst is that i get inverse p in my groin and crack when it's very flared.

I've cut out alcohol and sugar which helped a lot but can't do the entire pagano diet it's just too restrictive and would require quite an increase in both cost and time (and I want to eat pizza sometimes, dangit!)

I've been on dovonex and dovobet for years which barely does anything, I dont like using steroid creams in the latter unless it's a bad flare. Currently have plaques up and down my arms and legs, back, elbows and small ones on hands. I find dead sea baths the best job, also have a UVB light i spent a fortune on, from Germany. It's too tedious to use and I burnt myself a few times so i only use it on my hands which dont burn easily and is the only area not covered usually.

I was on the public derm list for so long I was eventually told after 2 years if I couldn't take a bus to Dublin from Donegal they couldn't help me. I couldn't afford that at the time especially knowing it would take multiple trips and Id need to book somewhere to stay.

By some miracle I got a job last September in the middle of all, but the added stress has cause my psoriasis to flare up, mostly I have more plaques.

I was wondering what the cost is to go private now I'm working I could maybe afford it. They haven't taken my medical card yet so I can still get medication with it but I've heard the biologics arent covered. Then I heard the consultation isnt but you can get the meds.

I'll be getting the jab soon as I'm technically a healthcare worker (working in an opticians) and work with the public. I was wondering if anyone could recommend a good derm who will point me in the direction of a good biologics since I've tried literally everything else, and if they can give me an idea what to expect price wise.

Gael23 · 24-02-2021 7:21pm

The DayDream wrote: »

I was on the public derm list for so long I was eventually told after 2 years if I couldn't take a bus to Dublin from Donegal they couldn't help me. I couldn't afford that at the time especially knowing it would take multiple trips and Id need to book somewhere to stay.

By some miracle I got a job last September in the middle of all, but the added stress has cause my psoriasis to flare up, mostly I have more plaques.

I was wondering what the cost is to go private now I'm working I could maybe afford it. They haven't taken my medical card yet so I can still get medication with it but I've heard the biologics arent covered. Then I heard the consultation isnt but you can get the meds.

I'll be getting the jab soon as I'm technically a healthcare worker (working in an opticians) and work with the public. I was wondering if anyone could recommend a good derm who will point me in the direction of a good biologics since I've tried literally everything else, and if they can give me an idea what to expect price wise.

My advice is to go private for the first consultation and then if needed go public. I paid €250 6 years ago but think of it as getting your life back. Biologics are covered by the medical card but you won’t get them straight off. They will try uV therapy next probably tablets first. Then if none of those work you go onto biologics. They are extremely expensive so tend to be given as a last resort rather than first option.

brevity · 02-03-2021 8:05pm

So I have been on Tremfya for about a year now. I was put on it because Stelara stopped working and the dermatologist and rheumatologist felt that Tremfya would kill two birds with one stone. It has helped with my psoriatic arthritis but my psoriasis is not improving.

Today I found out that I am being put on rinvoq.
https://www.rinvoq.com/ a tablet a day for the forceable future...

What’s a bit concerning is that this stuff seems specifically for arthritis rather that psoriasis. It does seem to be a biologic so perhaps it will target the skin too. It of course has its laundry list of dodgy side effects.

I sometimes wish I had the discipline to try and sort all this with diet. Even though diet isn’t necessarily a sliver bullet, it seems like a healthier approach.

senordingdong · 02-03-2021 9:52pm

brevity wrote: »

I sometimes wish I had the discipline to try and sort all this with diet. Even though diet isn’t necessarily a sliver bullet, it seems like a healthier approach.

No it isn't (a silver bullet) let me tell you. I'm two months into an elimination diet and it's a serious pain in the neck. Practically everything is a trigger for inflammation.

Gael23 · 02-03-2021 10:11pm

brevity wrote: »

So I have been on Tremfya for about a year now. I was put on it because Stelara stopped working and the dermatologist and rheumatologist felt that Tremfya would kill two birds with one stone. It has helped with my psoriatic arthritis but my psoriasis is not improving.

Today I found out that I am being put on rinvoq.
https://www.rinvoq.com/ a tablet a day for the forceable future...

What’s a bit concerning is that this stuff seems specifically for arthritis rather that psoriasis. It does seem to be a biologic so perhaps it will target the skin too. It of course has its laundry list of dodgy side effects.

I sometimes wish I had the discipline to try and sort all this with diet. Even though diet isn’t necessarily a sliver bullet, it seems like a healthier approach.

I wouldn’t be concerned about it being an RA drug, many autoimmune drugs are interchangeable, I’ve never heard of that medication though

The DayDream · 02-03-2021 10:16pm

Gael23 wrote: »

My advice is to go private for the first consultation and then if needed go public. I paid €250 6 years ago but think of it as getting your life back. Biologics are covered by the medical card but you won’t get them straight off. They will try uV therapy next probably tablets first. Then if none of those work you go onto biologics. They are extremely expensive so tend to be given as a last resort rather than first option.

Thanks. This is part of why I avoided going to one. Pay a bomb for a bunch of tedious time wasting (i don't drive and my work is considered essential so it will be hard to organize appointments) and given things I've already tried (I have a UV lamp, it takes forever to clear plaques that way and they come back as soon as you stop, plus you can get burned).

250 is crazy money, too. considering they and I know there is no cure!

I wish I could stick to the diets too. When I stock up on fruit and veg half of it goes off before I have had the chance to eat it. Meals get more expensive and less tasty, too when you have to cut out most bread, pasta, pizza, tomato sauce, potatoes, fried foods, spicy stuff, red meat, all fizzy drinks, sugar, alcohol. Can't remember if dairy is allowed, I think small amounts on the Pagano diet but he says to drink black coffee/tea (blech) but most anti inflammation diets say to cut it out as anything high in fat can make you inflamed.

senordingdong · 02-03-2021 10:26pm

The DayDream wrote: »

but most anti inflammation diets say to cut it out as anything high in fat can make you inflamed.

My hope with my elimination diet is to reduce to a blank canvas and then reintroduce each allergen one at a time to see if I can pinpoint a trigger(s).
Allergy testing is unbelievably expensive.

brevity · 03-03-2021 12:55am

Gael23 wrote: »

I wouldn’t be concerned about it being an RA drug, many autoimmune drugs are interchangeable, I’ve never heard of that medication though

Yea, it seems to be quite new. I thought I was going to be on another injection. Talz or Cosentex maybe..

Will give it a go anyways.

eeloe · 03-03-2021 5:22am

The DayDream wrote: »

Thanks. This is part of why I avoided going to one. Pay a bomb for a bunch of tedious time wasting (i don't drive and my work is considered essential so it will be hard to organize appointments) and given things I've already tried (I have a UV lamp, it takes forever to clear plaques that way and they come back as soon as you stop, plus you can get burned).

250 is crazy money, too. considering they and I know there is no cure!

I wish I could stick to the diets too. When I stock up on fruit and veg half of it goes off before I have had the chance to eat it. Meals get more expensive and less tasty, too when you have to cut out most bread, pasta, pizza, tomato sauce, potatoes, fried foods, spicy stuff, red meat, all fizzy drinks, sugar, alcohol. Can't remember if dairy is allowed, I think small amounts on the Pagano diet but he says to drink black coffee/tea (blech) but most anti inflammation diets say to cut it out as anything high in fat can make you inflamed.

It was the best €250 I’ve ever spent. I’m 99% psoriasis free, compared to 80% body coverage.

There may not be a cure, but they can certainly give you your life back.

makeorbrake · 03-03-2021 5:25am

brevity wrote: »

So I have been on Tremfya for about a year now. I was put on it because Stelara stopped workinge

How long had the Stelara been working before it stopped being effective? Has anyone else had the same experience.

Psoriasis

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