Psoriasis Club
  • Forum
  • Home
  • Portal
  • Member List
  • Psoriasis Score
  • PQOLS
  • What is psoriasis
  • Search
  • Help
Hello Guest, Welcome To The Psoriasis Club Forum. We are a self funded friendly group of people who understand.
Never be alone with psoriasis, come and join us. (Members see a lot more than you)
wave
Login Register
Login
Username:
Password:
Lost Password?
 
Psoriasis Club › HealthHealth Boards › Psoriasis And Psoriatic Arthritis Topics v
1 2 3 4 5 … 24 Next »

Pustular psoriasis advice needed

Pages (2): « Previous 1 2
Threaded Mode
Pustular psoriasis advice needed
Caroline Offline
You must hurry if you ever want to catch a chicken...
*
Forum Helper
Posts: 26,513
Threads: 113
Joined: Nov 2011
Gender: Female
Location: In between the tulips
Psoriasis Score: 3
Psoriatic Arthritis Score: 3
PQOLS: 4
Treatment: Got back to DMF slow release
#11
Wed-02-04-2025, 16:41 PM
Hi Alleyes,

That is a nasty condition, GPP. I have heard that it mostly appears with people who have an Asiatic roots... but perhaps also Scottish???

I know that IFPA, the international psoriasis foundation/association or whatever. Have done a project about Rare diseases which also concerned GPP. So maybe you can find some more information on their website.
Also I have seen that it had been picked up by the Dutch association in some kind of project. ...... searching..... yes, I see a little movie on the IFPA site from the Dutch association.

Vaguely I remember that there is a new biologic, that should work against GPP. I thought that was Soytiktu... but I am not sure... Fred ????

It is indeed very rare, so even dermatologists only have minor knowledge, I guess depending on their experience of having treated GPP in an earlier stage.

Wave
Caroline
Quote
Fred Online
I Wanted To Change the World But Got Up Far Too Late.
Moderator
Posts: 66,956
Threads: 3,888
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
#12
Wed-02-04-2025, 17:01 PM
(Wed-02-04-2025, 16:41 PM)Caroline Wrote: Vaguely I remember that there is a new biologic, that should work against GPP.  I thought that was Soytiktu... but I am not sure... Fred ????


Spevigo (spesolimab) but that may be the one Alleyes was on about but didn't get.
Quote
Caroline Offline
You must hurry if you ever want to catch a chicken...
*
Forum Helper
Posts: 26,513
Threads: 113
Joined: Nov 2011
Gender: Female
Location: In between the tulips
Psoriasis Score: 3
Psoriatic Arthritis Score: 3
PQOLS: 4
Treatment: Got back to DMF slow release
#13
Wed-02-04-2025, 18:13 PM
(Wed-02-04-2025, 17:01 PM)Fred Wrote:
(Wed-02-04-2025, 16:41 PM)Caroline Wrote: Vaguely I remember that there is a new biologic, that should work against GPP.  I thought that was Soytiktu... but I am not sure... Fred ????


Spevigo (spesolimab) but that may be the one Alleyes was on about but didn't get.

Ah. Yes.. that one. She should get that one.
Quote
Fred Online
I Wanted To Change the World But Got Up Far Too Late.
Moderator
Posts: 66,956
Threads: 3,888
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
#14
Wed-02-04-2025, 19:40 PM
(Wed-02-04-2025, 18:13 PM)Caroline Wrote:
(Wed-02-04-2025, 17:01 PM)Fred Wrote:
(Wed-02-04-2025, 16:41 PM)Caroline Wrote: Vaguely I remember that there is a new biologic, that should work against GPP.  I thought that was Soytiktu... but I am not sure... Fred ????


Spevigo (spesolimab) but that may be the one Alleyes was on about but didn't get.

Ah. Yes.. that one. She should get that one.


He Wink
Quote
Kat Offline
Take my advice; I don't use it anyway.
*
Forum Helper
Posts: 9,829
Threads: 84
Joined: Aug 2014
Gender: Female
Location: GA
Psoriasis Score: 3
Treatment: Clobetasol Topical
#15
Thu-03-04-2025, 01:46 AM
(Wed-02-04-2025, 14:36 PM)Alleyes Wrote: Well here in Scotland Kat , we don't see this big bright warm thing in the sky very often , think people call it the sun ? Scotland as you may know is not known for sun but now if you needed rain we could give you that for free but Trump may put a tariff on it  Big Grin Nice and sunny today but drops to minus later , hoping the hurricane swerves past Georgia

We're inland so more threats from Tornadoes here. I think it's supposed to rain every day here this week so perhaps hold off on sending over the rain right now. Big Grin

I always wanted to visit Scotland. One of my best friends (of whom sadly I lost touch) was from Scotland. We were both Navy wives.

Hope you enjoyed your sunny day.
Quote
Alleyes Offline Author
Novice


Posts: 8
Threads: 1
Joined: Apr 2025
Gender: Male
Location: Glasgow,uk
Treatment: Betamethasone , Fusidic Betamethasone
#16
Thu-03-04-2025, 13:06 PM
Hi Kat thanks for your message,  I will say some of the scenery throughout Scotland is absolutely stunning and I have worked with Spanish,  Polish,  Portuguese,  Latvian,  Brazilian,  Argentinian,  Canadians and American who all have said they haven't ever seen such beautiful countryside landscapes or even the cities architecture,  unfortunately our country isn't known for good weather so the tourism industry has never boomed , I live in Glasgow which can be not bad with tourists but Edinburgh is where everyone wants to visit , my son lives there but it's not my bag , it seems drab .
Take it your friends husband was based at Faslane sub base , they still dock Ohio and Virginia class boats there.
Stay safe through your weather Kat .  Wave
Quote
Forest Walker Offline
100 + Member I'd Rather Be Roller Skating

100 + Member I Just Cant Stop !
Posts: 9,438
Threads: 128
Joined: Aug 2021
Gender: Female
Location: Northern Washington State
Treatment: Humira, Moisturizers, Triamcinolonoe Acetonide
#17
Thu-03-04-2025, 14:30 PM
Welcome, Alleyes!  You found a really good club, here.  

Good of your doctor to call you directly and apologize for his misdiagnosis.  I hope you find relief with your dermatologist next month.  Even with rare diseases, the doctors SHOULD be able to talk with each other, all around the world, and confer on treatments for rare illnesses.  

Good luck and please let us know how it goes.

I like the comedian, Craig Ferguson.  Have you heard of him?
Quote
Kat Offline
Take my advice; I don't use it anyway.
*
Forum Helper
Posts: 9,829
Threads: 84
Joined: Aug 2014
Gender: Female
Location: GA
Psoriasis Score: 3
Treatment: Clobetasol Topical
#18
Thu-03-04-2025, 17:42 PM
(Thu-03-04-2025, 13:06 PM)Alleyes Wrote: Hi Kat thanks for your message,  I will say some of the scenery throughout Scotland is absolutely stunning and I have worked with Spanish,  Polish,  Portuguese,  Latvian,  Brazilian,  Argentinian,  Canadians and American who all have said they haven't ever seen such beautiful countryside landscapes or even the cities architecture,  unfortunately our country isn't known for good weather so the tourism industry has never boomed , I live in Glasgow which can be not bad with tourists but Edinburgh is where everyone wants to visit , my son lives there but it's not my bag , it seems drab .
Take it your friends husband was based at Faslane sub base , they still dock Ohio and Virginia class boats there.
Stay safe through your weather Kat .  Wave

He was stationed at Edzell. Fran (my friend) was from Glasgow, she was one of the nicest people you could ever meet, never said a bad word about anyone. My brother did some ancestry searches on our family and basically... we're boring, there isn't a lot outside of the States. However!! Going back many generations ago, he did find some Scottish roots. And I've always heard the coutryside there is gorgeous!
Quote
Caroline Offline
You must hurry if you ever want to catch a chicken...
*
Forum Helper
Posts: 26,513
Threads: 113
Joined: Nov 2011
Gender: Female
Location: In between the tulips
Psoriasis Score: 3
Psoriatic Arthritis Score: 3
PQOLS: 4
Treatment: Got back to DMF slow release
#19
Thu-03-04-2025, 19:16 PM
(Wed-02-04-2025, 19:40 PM)Fred Wrote:
(Wed-02-04-2025, 18:13 PM)Caroline Wrote:
(Wed-02-04-2025, 17:01 PM)Fred Wrote:
(Wed-02-04-2025, 16:41 PM)Caroline Wrote: Vaguely I remember that there is a new biologic, that should work against GPP.  I thought that was Soytiktu... but I am not sure... Fred ????


Spevigo (spesolimab) but that may be the one Alleyes was on about but didn't get.

Ah. Yes.. that one. She should get that one.


He  Wink

oops Was standing on the wrong foot because of the mentioning of red hair and freckles.. Smile
Quote
Fred Online
I Wanted To Change the World But Got Up Far Too Late.
Moderator
Posts: 66,956
Threads: 3,888
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
#20
Fri-04-04-2025, 11:05 AM
@Alleyes you may be interested in this new thread Cosentyx and generalized pustular psoriasis
Quote
« Next Oldest | Next Newest »
Pages (2): « Previous 1 2


Possibly Related Threads…
Thread Author Replies Views Last Post
  My life with Pustular Psoriasis visrael22 10 7,493 Thu-30-05-2024, 17:44 PM
Last Post: Trampledrosie
  Any advice welcome!! Emi1995 19 12,247 Tue-09-08-2022, 16:04 PM
Last Post: D Foster
  New here - help needed Lauralou87 56 53,233 Sun-19-03-2017, 15:41 PM
Last Post: Kat
  Is this pustular psoriasis? Toodlesoodles 13 14,721 Tue-08-11-2016, 19:19 PM
Last Post: Fred
  Advice needed about DMARDs jiml 45 47,818 Sat-20-08-2016, 00:14 AM
Last Post: mataribot



Users browsing this thread: 2 Guest(s)
    About | Contact us | Login | Register | Home | Cookies/GDPR | RSS Syndication | Portal | Types Of Psoriasis | Psoriasis Score | Members Only Boards
    Copyright © 2010 - 2025 Psoriasis Club | All Rights Reserved | Founded May 2010 | Psoriasis Club Is Self Funded Without Sponsors Or Donations | Software by MyBB | Social
Linear Mode
Threaded Mode