Psoriasis

Misguided1

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

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

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

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

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

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

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

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

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

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

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

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

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

Gael23

Looptheloop30 wrote: »

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

Yes you can and should

eeloe

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

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

Gael23

dahat wrote: »

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

It depends what medication you are on really

dahat

Gael23 wrote: »

It depends what medication you are on really

Enbrel & MTX combo?

Gael23

dahat wrote: »

Enbrel & MTX combo?

Yeah then your in group 7.

dahat

Gael23 wrote: »

Yeah then your in group 7.

Thanks.

The DayDream

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

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

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

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

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

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

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

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

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

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.