Hello,

I don’t normally talk about my condition. Well, not unless it is to a doctor. Actually, I lie, I have not talked to a doctor in six years. When I used to talk to them I used the minimum number of words to describe my condition and then spent the rest of the time staring at them foolishly and trying to keep my anxiety under control.  Come to think of it, I did the exact same thing with dentists, pharmacists, grocery store owners and random tourists asking for directions.

Two days ago, I caught a cold and now my whole body feels so tight I wish I were a snake so that I could shed this skin and get some relief. But, since I couldn’t do that and since I’m typing this at four in the morning, my best next course of action was to do what I’ve done for years, go to uncle Google and see if there are any new treatments and tricks to ease this discomfort. Through a circuitous route of adverts, websites requiring registration before you read them and clinical journals, Uncle G eventually sent me here.

I always knew I wasn’t alone in this. I read about others suffering from the same thing and sometimes, on a crowded train or bus, spotted one or two with very clear signs. Sadly, they didn’t return my “kindred spirit” looks and probably thought me very creepy. Now I find there is a whole forum of people with the same condition and, even if this is my last ever post on here, know that I could read their postings and occasionally mutter to myself “that’s exactly how it is.  The irritating unreachable spot under the shoulder blade, right?”

In fact, it’s not only the shoulder blade. It’s in the bits that clothes can hide and the bits it can’t. I have a black face but the constant use of those strong creams in the early days have made me look like one of Theresa May’s favourite leopard skin heels (all pigmented and multi-coloured). The bits on my arms and legs are as if I walked into a tattoo parlour and demanded they paint bits of poppadum all over me. I could swear I have one in the shape of a heart.

Beards are trendy these days.  I would love to grow one and know that mine would be great.  I can actually grow a full beard if I wanted to, there are no missing bits of dry islands on my face (well other than the plaque). But, like buying a Ferrari when you’re banned from driving, growing a beard that you can’t stroke is pointless.

I once was having lunch with two female friends. One of them started praising my hands and the other laughed. Then both took a hand each and went on and on about how great and smooth and glowing my hands were, how shiny my nails were and how beautiful my skin was.  I asked them to volunteer any positive comments on the rest of me but they were only interested and fascinated with my hands.  When the condition started and found its way to my (allegedly) lovely nails, I kept my hands in my pockets whenever I met those ladies again.

I used to have hair. I am not sure if I lost it naturally or because of the condition. Incidentally, I refer to it as the “condition” because I don’t really like its name.  I once had an idea that the reason all the medications were never a full cure was because psoriasis was never a full word. That ‘P’ gives me the same itch as the plaque itself.

Anyway, I’m forty-five, a father of four and had this condition for over 20 years.  I apologise if I bored you with my whinging but I really have a cold and my skin really feels tight and I wanted to vent to (what I hope are) like-minded people.

p.s
I know I should probably go see a doctor and I will.  I probably should also go to sleep but will try to keep an eye on the site on a daily basis. Glad to be a member of you’ll have me.

Hi all, am so pleased to find somewhere I can get some support. My story briefly..........I have always had a tiny patch of scalp psoriasis which was annoying but no big deal. Around 2 years ago I lost my job in stressful circumstances and immediately (and for the first time) I had plaques appear on my lower legs. This was kept reasonably well in control via some steroid creams (prescribed) but in the last few months (and again stress related I think) the plaques have spread quickly and I now have much of my legs, arms and some of my back fairly covered in plaques. My GP had prescribed Dovobet which initially helped but then seemed to stop working and after a few weeks use I came off and was prescribed Dovobex as an alternative. This has proven to be difficult as although the original plaques have calmed and smoothed a little, I am still getting further spread of new plaques and I have intense periods where my legs and arms are incredibly itchy. I have been using the Dovobex for around 2 weeks so maybe a bit early to tell if effective. I guess my questions are as follows:

1. How long does the Dovobex typically take to work?
2. Is the spread of new plaques unrelated to the use of Dovobex / Dovobet?
3. Can anyone recommend how to calm the intense itchy hours I get?? 
4. Are there any tricks to control the spread of plaques to parts of my body that are unaffected?

I am very grateful for all offers of help.

Dunc

All I want is real people to converse/interact with who have a similar condition. I hate feeling judged on my outside appearance for plaque psoriasis. I have this 'joke' I tell the people who try to understand me when most people treat me badly. I say God made my outsides match my insides- calloused. That is not true. But its something to say that they will try to understand. That's why I'm giving this site a try. If this doesn't work... then, yeah... I really am as alone as I feel.

First off, I'd like to say that I feel happy I can type out one of my "Dear Diary" entries I type on Word 2016 (then erase immediately afterward) here and maybe get feedback. I always wrote about my psoriasis and how it affects my life and life decisions. 

This feels weird. I'm sorry but I think it would be easier if I write how i'm used to. Be warned that I am not a grammar genius or a writer. 

Dear Diary,
     I have psoriasis. Plaque psoriasis. I was diagnosed in 2015. I didn't know it then, but in 2009, during the pregnancy of my third, and last child, I noticed a 'spot' on the back of my right calf. It was about the size of a dime. I didn't know what it was. I used make-up to hide the spot, thinking it was a part of pregnancy and would go away. It didn't go away. 

    I don't know when it happened. I was so unaware of what I had. In 2013 I had small strips of white 'scabs' on my shins and smalls blotches on my elbows. I found out through Googling that I had psoriasis. I was devastated. Little did I know that that was nothing compared to what I have now. And right now I feel blessed that I have learned how much worse my condition could be but is not. 

    Right now I have psoriasis on my scalp (no hair loss), my elbows are covered in plaques with dime to quarter sized spots on both arms (I'll NEVER go out in public uncovered),worse, my legs covered almost 90% (my biggest issue, explain later on), I have a lot of pencil eraser spots on my back, and i have a small spot developing on my face. 

    My legs. I used to love wearing capris. Back then, my self conscious issues were the size of my calves. Now they're covered in thick, yellow-gray-silvery plaques that itch horrendously. I've scratched myself soooo raw once that I caught a staph infection which led to sepsis then necrotizing fasciitis. I was in I.C.U. and the amputation of my leg was very real. Luckily, I still have my leg. 

    Right now, I'm at a loss for what I can do to help me live a more satisfying life. I've tried Triaminocolone, Clobetasol, Methotrexate, and now I'm preparing to try the Humira pen injections. From what I've read, they're not so effective on plaque psoriasis and that they HURT. I am so nervous. 

    Also, I should add that I have PCOS and have recently been diagnosed with type 2 diabetes. 

    I feel so defeated. Beaten. I couldn't take another blow...  but maybe I could. 

    Ugh... I do not know. But I'm pretty sure I will not give up.

October 4, 2016 I received my first two injections of Cosentyx.  I saw my regular dermatologist as well as a second opinion. Both came up with a PASI score of 15%.  When I stopped the Humira injections I was 3% at the end of August. I had to stop injecting Humira due to a severe reaction to the drug after increasing the dose from bi-weekly to weekly Humira injections.  My psoriatic arthritis has been much worse for the past few months.  Also, I have one very swollen toe caused by the psoriatic arthritis.  Schedule as follows:

Week 0= Two injections
Week 1= Two injections
Week 2= Two injections
Week 3= Two injections
Week 4= Two injections

Really hoping this will provide some relief.

Hello all. I have just signed up today! I have had psoriasis for about 25 years.age 37 now. I have been on various treatments over the years the most recent being humira and enbrel injections. I have just been approved for stelera and am waiting on a delivery. I am really hopeful of this being the one!!! Wish me luck!!

My P is usually on my elbows, one knee and a few spots here and there, plus on my scalp. I have a home uvb machine that would control it, but never completely get rid of it.

Over the last while it has become way worse. I have spots all over. The backs of my hands are covered with small spots that seem to almost merge to cover the backs. My arms, sides and legs are dotted as well my other knee, ankle, sides, butt have small potato chip sized plaques. I have a new plaque under my left eyebrow and on my forehead. Something seems to be going on with my back. The old plaques on my knee, elbows etc. are larger and way thicker. All the spots are a new extra thick style plaques.

Anyone experience this? Are all the spots guttate?

Should I consider some hardcore immune drugs?

Any insights are appreciated.

For those of you that have had good results with dovonex, did you find it took a little while for the results to be apparent or was it just a day or two like with the steroid creams. Currently been using dovonex for 3 days and it doesn't seem to be doing much as of yet except helping to keep the area moisturised...

Really hoping to see some results as using dovobet, even short term, gives me folliculitis, particularly on my biggest patch of psoriasis. And obviously it shouldn't be used long term anyway.

Hi, I was wondering if there was anywhere to look which shows pictures of examples of psoriasis coverage and what score they have?
I've only been scored once and I got the distinct impression the nurse hadn't don't it before but was just following the printed guidelines, and I'm interested to get a better idea of different levels if severity and what they look like.

Hi @all.

There are some threads here about Acitretin but i will start a new one. Maybe we can change some experiences and get some answers on open questions.

my name is phil and i am from germany so please excuse the wrong spelling and other mistakes :-) i read a lot in this forum and now i decided to give you a bit of my experiences back. there is a lot of information in this forum and all of you seem to be very nice people :-)

i am 34 and in the middle of may (so about 4.5 months ago my hand started itching. The dermatologist (is that right) said "ekzem" and gave me cortison creme and said "good luck". after 2 months of using the cream and a lot of other creme i went to the dermatologic clinic here in munich because they are specialized for treatments of the ekzem. they also said: ekzem (second time i had the diagnose of a ekzem).

So i started with a PUVA-treatment at the end of juliy until the beginning of september. it helped a bit but not as good as i was hoping and so they decided to give me toctino. The doctor that had to decide about the dose (he is something like the superstar in this hospital concerning all things with psoriasis. and, surprise: he is really nice) took a look at my hand and said that toctino is not the right medicine for psoriasis pustulosa and i had to take neotigason. nice, after 1.5 months i finally got a new diagnose.

anyway i started with 30mg per day four weeks ago. minimal side effects (i am always tired, sometimes i got a headache) but the skin on the hands and the feet is really really peelng off. blood values are also very good at the moment.
 
but no itching and no pustulosa at the moment only red skin on the hands and feet and i hope the peeling ends soon, i heard and read that this is a normal side effect. will continue with the 30mg per day until i went to the hospital in 2 weeks. 

so long, greetings from germany and all the best to all of you
philipp

As you know I don't like advertising on here and this could be looked at as a publicity stunt*. But I think it's worth showing as the results, (if correct) don't make good reading.

Quote:

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Novartis presented new findings from the largest global survey to date of people with psoriasis, showing many do not achieve the treatment goal of clear skin or even believe it is a realistic goal. People with the disease also report that they face discrimination, humiliation, and mental illness, according to the research presented at the European Academy of Dermatology and Venereology (EADV) Congress.

While real-world evidence presented at EADV demonstrated that clear skin significantly improves quality of life, the survey found over half (57%) did not achieve clear or almost clear skin, and nearly a third of people (28%) had to wait five years before receiving treatment that resulted in clear or almost clear skin.

"Every patient deserves the opportunity to achieve clear skin, but this research tells us many are not given the chance," said Vasant Narasimhan, Global Head, Drug Development and Chief Medical Officer, Novartis. "Novartis supports the World Health Organization's resolution to make psoriasis a global health priority and help patients overcome the heartbreaking physical, societal and psychological challenges the condition presents."

Over 8,300 people from 31 countries took part in the survey, which aimed to improve the understanding of patients' perspectives on clear skin and, importantly, the impact of not achieving it. This major research initiative represents the largest ever partnership between Novartis and patient organizations, including 25 groups from around the world.

The survey findings reinforce the need for greater education and engagement of healthcare professionals and patients about the achievability of clear or almost clear skin as a treatment goal. In addition, they demonstrate the detrimental impact psoriasis has on patients' lives. The majority of people surveyed (84%) were suffering discrimination and humiliation, while almost half (43%) of patients felt psoriasis had affected their relationships and made it difficult to form intimate relationships.

A third of people (38%) surveyed also reported that they have been diagnosed with a psychological condition due to psoriasis, with one in four diagnosed with anxiety (24%) or depression (25%). Patients with anxiety or depression were also found to suffer more severe disease and worse quality of life in other research presented at EADV, further emphasizing the link between the psychological and physical aspects of the disease.

Hi all.

So obviously steroid creams are a no no for that area so what is best to use to clear up psoriasis down there. Notice I am getting a bit on the underside of my penis, towards the scrotum (sorry for the graphic description). Its not at all flakey or raised, it just looks a bit red.

Seeing as nothing seems to have much of an affect on the psoriasis on other areas of my body except steroids-based creams, but you can't use them here, I'm a bit worried

Thanks!

I have just switched from Stelara to Cosentyx and the dose got me thinking about why they are so different.

For example:

Humira: 40mg twice per month.

Enbrel: 50mg per week.

Stelara: 45mg every three months (90mg if over 100Kg).

Cosentyx: 300mg monthly.

So why the big difference between brands?

How are your experiences with your psoriasis and relationships? Are your partners understanding and supportive? Anyone had a break up because of it?

I know this is a shallow topic and I hope no one thinks bad of me for making it. Just feeling a bit worried at the moment. Started a relationship with a great girl that I love to bits but just worried about what she may think. Only have minor psoriasis so I've been able to keep it hidden but I worry about it getting worse etc.

I know people will say 'well if it bothers her she isn't worth your time and you are better off without' which is very true but i am sure you can appreciate it doesn't make me feel much better right now.

I joined this club about a month ago for advice on my newly aquired pustular psoriosis i was advised by dermatologist to use cloboderm, exorex and dovonex on a monthly rotation also to clingfilm area after each application. On starting this advice at the moment my foot is clear, which i hope will continue. So for anybody else who suffers from pp i can recommend this treatment.

Hi Everyone, I'm new here, and wonder why I'd never stumbled across this forum in my searches before. From what I've seen thus far the community seems awesome, and very helpful. I found the forum searching for info on Taltz. I recently started Humira but more about that later. 

I recently turned 40, this month, lol. I was first suspected of having Psoriasis around 28... undiagnosed. Looking back I now think it started back in my early 20's it was slow to progress. Most recently (past 2 years) developing on my knees, elbows, and hands. I couldn't hide it anymore. 

I tried multitudes of creams and home remedies. None ever really worked, and never really worked for more than two weeks. 

I finally found a derm that seems to care, and he put me on Humira. I've done my loading dose of 2 pens followed by 1 pen 8 days later. In two weeks I begin the normal dosing of 1 pen every two weeks. 

I was about to say well thats who I am, but then I would be saying that psoriasis defines me. Which it doesn't... anymore. 

So far I'm happy with the results from Humira. More so than any other treatment I've tried.

Lilly will present data on Taltz at the annual European Academy of Dermatology and Venereology Congress (EADV).

Quote:

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-- Eli Lilly and Company (NYSE: LLY) will highlight clinical and patient-related health outcomes data evaluating Taltz® (ixekizumab) for the treatment of adult patients with moderate-to-severe plaque psoriasis at the annual European Academy of Dermatology and Venereology Congress (EADV), which will take place Sept. 28-Oct. 2, 2016, in Vienna, Austria.

A total of 17 abstracts, including eight oral abstracts with one late-breaker presentation, will feature sub-analyses from pivotal Phase 3 data of Taltz for the treatment of moderate-to-severe plaque psoriasis across a number of areas.

"EADV represents a tremendous opportunity for dermatologists to exchange information that helps better address unmet needs for patients," said Dr. Lotus Mallbris, Lilly's global brand development leader for Taltz. "Lilly is excited to support the evolution of new treatments in dermatology as we share new data for Taltz in the treatment of moderate-to-severe plaque psoriasis."

Hi all,

I am new to this forum so sure how it works.

I have Psoriasis on my scalp elbows parts of my legs, but the worse is on my hands, I am in agony day and night,I have been given so many different creams but none of them seem to work on my hands. 

Any advise with be very much appreciated please.

Thank you.

This will be my new thread about my journey on Cosentyx.

As some may know I've been on Stelara for just over six years now and it's time to move on to something else as it's not working as well as it used to for me. You can read my journey on Stelara in these two threads if you're interested:
Stelara 16 Months On.
Stelara round two

But this about Cosentyx.

My main concern is keeping the psoriatic arthritis under control as this is the thing that causes me the most problems, so I'm going to be monitoring how well Cosentyx can help me for that.  



It comes in injections of 150mg, and one dose is two shots = 300mg

The starting dose is 300mg for 5 weeks and then a maintenance dose of 300mg and I shall be starting on the 1st October 2016 (this Saturday) Don't ask me why, but they gave me 4 doses today and I have to phone for #5

#1 1st Oct two shots of 150mg = 300mg.
#2 8th Oct two shots of 150mg = 300mg.
#3 15th Oct two shots of 150mg = 300mg.
#4 22nd Oct two shots of 150mg = 300mg.
#5 29th Oct two shots of 150mg = 300mg
From there I will be taking two shots of 150mg = 300mg every 4 weeks.

It comes in two types of shot. A pre filled Syringe and an Auto injector (Pen). I prefer using the syringes as seen in this image.



Like I said the psoriatic arthritis is more important to me and I shall be using the score systems on Psoriasis Club to keep track of my progress.
https://psoriasisclub.org/psoriasisscore.php
https://psoriasisclub.org/psoriaticarthritisscore.php

I do currently have a little bit of psoriasis on the front of my leg that has popped up so I'll put an image here. This is usually at the end of my 12 weeks run on Stelara and it's been 13 now.


Now to check my scores:

Psoriasis: 3

Psoriatic arthritis: 5

The biggest test will be when the weather changes, at the moment we are still having good weather so the psoriatic arthritis isn't too bad.

Now I just wait till Saturday and will report back when I've taken the first two shots.

*You are welcome to post in this thread, but please try to keep it On Topic.

Another bio in the pipeline, risankizumab an IL-23 inhibitor by AbbVie will have data presented at the 25th European Academy of Dermatology and Venereology Congress (EADV), September 28 - October 2, in Vienna, Austria. They will also be presenting new data on Humira.

Quote:

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AbbVie (NYSE: ABBV), a global biopharmaceutical company, today announced that new data on HUMIRA® (adalimumab) and investigational medicine risankizumab (formerly BI 655066), an IL-23 inhibitor, will be presented at the 25th European Academy of Dermatology and Venereology Congress (EADV), September 28 - October 2, in Vienna, Austria. These presentations build upon AbbVie's continued scientific leadership in serious dermatological conditions including psoriasis, psoriatic arthritis and hidradenitis suppurativa.

"AbbVie's presence at EADV 2016 highlights the latest scientific research in difficult-to-treat skin conditions, including data underscoring the considerable impact these diseases can have on a person's physical, social and emotional wellbeing and the need for quality care," said Shao-Lee Lin, Vice President Therapeutic Areas and International Development, AbbVie. "Additionally, building on our deep experience over more than 18 years in immunology with HUMIRA, we are excited to present the latest results of data evaluating investigational compound risankizumab, an IL-23 biologic for patients living with moderate to severe chronic plaque psoriasis."

New data from studies evaluating investigational IL-23 monoclonal biologic antibody, risankizumab, will be presented from the Phase 2 open-label extension study in moderate to severe chronic plaque psoriasis.

AbbVie will also present HUMIRA two-year safety and efficacy results for the treatment of moderate to severe HS, as well as multiple health economics outcomes research studies revealing the real-world burden of HS on patients and demonstrating AbbVie's commitment to the underserved HS community. Further, new seven year interim results from the ESPRIT 10-year post-marketing surveillance safety registry of HUMIRA will report safety and effectiveness of HUMIRA treatment for moderate to severe chronic plaque psoriasis.