Hey all

great idea with a new forum, very clean design I must say.

I wanted to finally join a PSO forum to share my thoughts and worries and experiences with you other sufferers.

First off a little about me.
Living in North of Europe in a country called Denmark near the city of Copenhagen.
I am married to my wife and we have 2 beautiful boys of 3 years and 4 months.
I am 34 years old and have had PSO since i was around 21 years old.


In Denmark we have gov. paid healthcare which can be a great benefit but also requires that you go trough a lot of loops to be eligible to the biologics.
It is required that you try all other treatments before you can get the biologics.

Thus I started seriously 6 years ago to get on the new biologics, since my PSO was getting worse. Today I have plagues on the lower legs, lower arms, a few spots here and there. Nails also hit. Lately feet and hands are getting attack sometimes but still not that bad.

here is short brief of my trials, I will write more later on

generally I will say, I have positively given up on wonder treatments. I read the book called Sunbathing Naked and Other Miracle Cures by Guy Kennaway, which I will recommended all PSO to read, it is a fun and upbeat description on how to live with PSO.


I stated out with UVB treatments which had some effect but PSO came back fast after that. Right now I am on UVB again since I found out that you since have to be fairly clear before you can get any effect form the UVB treatments.

Daivobet/Dovobet/Xamiol
Great drug, but afraid of long term use if I end getting crushing syndrome, have gained weight when on Daivobet. Xamiol is a gel of daivobet great for the scalp. still us every other day.

MTX
was on for 6 months. Sick with fever for 3 weeks, generally looked bad and was often sick from nothing. Effect was pretty good on PSO.

Remicade
3 days after 1 injection lameness came to the hands, then the whole body could not move, was taken to hospital by ambulance, MRI scan showed nothing, but we needed up stopping treatment after that.

enbrel/humirca
Doctor and !I rules these out becasue of the recently discovered adverse effects of getting MS from these drugs. also same type as Remicade.

Cream/baby oil
lots of cream and oil every day, twice a day. keep the doctor away.

Next step?

Stelara?
Doctors can order it to me now, but i am afrid of the adverse effects and if as Fred says only works 2 years.

for now i just wanted to say hey to all

Janssen announced today that STELARA® (ustekinumab) has been awarded the prestigious 2012 International Prix Galien Award at a ceremony in Lyon, France.  The Prix Galien Award recognizes extraordinary efforts in biopharmaceutical and medical technology research and development by honoring biomedical advances impacting both individuals and public health in the past decade. The honor is acknowledgment of the technical, scientific and clinical research skills necessary to develop innovative medicines and devices.

"It is a tremendous honor for Janssen to be recognized with the International Prix Galien Award for STELARA," said Jay P. Siegel, M.D., Chief Biotechnology Officer and Head, Global Regulatory Affairs, Janssen Research & Development, LLC.  "We remain focused on bringing innovative medicines, like STELARA, to patients and health care professionals around the world."

STELARA is a human monoclonal antibody currently approved in more than 60 countries, including Canada, Europe, the United States, Brazil, Mexico, Australia and Japan, for the treatment of moderate to severe plaque psoriasis.

"STELARA exemplifies the convergence of science, technology and medicine," added Susan Dillon, Ph.D., Global Therapeutic Area Head, Immunology, Janssen Research & Development, LLC.  "We are proud of the difference that STELARA has and continues to make in the lives of patients battling moderate to severe plaque psoriasis, and are humbled to receive the International Prix Galien Award."

Considered the industry's highest accolade, the international Prix Galien Award is given every other year and selected from previous national contest Prix Galien winners.  STELARA received the Prix Galien USA Best Biotechnology Product Award in 2011 and the Prix Galien Canada Innovative Product Award in 2010.  Prix Galien was first established in 1970 by French pharmacist Roland Mehl, and the international award was inaugurated in 1990. 

Source: prnewswire.com

Stelara (ustekinumab)

Following on from the study I posted in June Psoriasis and oral health here is another study that suggests an increased risk of psoriasis among patients with CP* (Chronic periodontitis)

Background: 
Although psoriasis and chronic periodontitis (CP) may share an underlying immune dysregulation as part of their pathologies, to date only one small-scale cross-sectional pilot study has investigated the potential association between CP and psoriasis.

Objectives: 
This study aimed to investigate the subsequent risk for psoriasis following a diagnosis of CP by utilizing a cohort study design and population-based dataset in Taiwan.

Methods: 
In total, 115 365 patients with CP were included in the study cohort and 115 365 patients without CP were included in the comparison cohort. We individually tracked each patient for a 5-year period to identify those who had subsequently received a diagnosis of psoriasis. A Cox proportional hazards regression was performed to compute the 5-year risk of subsequent psoriasis following a diagnosis of CP.

Results: 
We found that the incidence rate of psoriasis during the 5-year follow-up period was 1·88 [95% confidence interval (CI) 1·77–1·99] per 1000 person-years in patients with CP and 1·22 (95% CI 1·14–1·32) per 1000 person-years in comparison patients. After censoring those who died during the follow-up period, and adjusting for monthly income and geographical region, compared with comparison patients, the hazard ratio (HR) of psoriasis for patients with CP was 1·52 (95% CI 1·38–1·70). Furthermore, the study subjects who had undergone a gingivectomy or periodontal flap operation had only a slightly higher adjusted risk of psoriasis than comparison patients (HR 1·26).

Conclusions: 
This study detected an increased risk for psoriasis among patients with CP. Treatment for CP attenuated, but did not nullify, the risk for subsequent psoriasis.

Source: onlinelibrary.wiley.com

*CP (Chronic periodontitis) is a common disease of the oral cavity consisting of chronic inflammation of the periodontal tissues that is caused by accumulation of profuse amounts of dental plaque.

Signs and symptoms:

• Redness or bleeding of gums while brushing teeth.
  
• Gum swelling that recurs.
  
• Halitosis, or bad breath, and a persistent metallic taste in the mouth.
  
• Gingival recession, resulting in apparent lengthening of teeth.
  
• Deep pockets between the teeth and the gums.
  

Maybe some of you may be interested...

Prescription for pustular psoriasis by the Medical board of the National Psoriasis Foundation.

So Britney Spears has psoriasis

Good on her getting the flakes on show

Shame on the media for making such a deal of it

This is a very sad piece of news, but I felt it should be posted on here to help raise awareness that Psoriasis is not just a skin problem.

Quote:

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BANGALORE: Depressed over a skin ailment that curtailed her liking to dress up, a II BCom student allegedly hanged herself from the ceiling of her home late on Sunday night.

She was found hanging by her mother and brother in their residence at Subramanyanagar near Rajajinagar, off Rajkumar Road.

Sadhana Arulananda (20), daughter of businessman and Ramamohanapalya resident Arulananda, was diagnosed with psoriasis over 10 years ago. The disease exacerbated a couple of years back, resulting in inflammation and scaling.

Sadhana's elder brother, Arun, and mother had gone to her grandmother's house at Rama Mandir in Rajajinagar in the evening. "They later tried calling Sadhana over the phone but received no response. They returned home around 10pm and found the front door locked from inside," Subramanyanagar police said.

Sensing something amiss, Arun stood on the compound and peeped from the kitchen ventilator. "He saw his younger sister hanging from the ceiling in the room. With neighbours' help, he broke open the door and untied the noose," police said.

Arun, a private company employee, told cops that Sadhana showed signs of life when he brought her down. "They shifted her to a hospital on Dr Rajkumar Road but doctors declared her brought dead," police said.

Sadhana was a student of Maharani College, Sheshadri Road.

In his statement to cops, Arun said his sister was distraught over her deteriorating skin ailment. Sadhana had stopped attending functions, given the ailment's visible symptoms. The ailment also resulted in her developing allergies to particular dresses.

"This disease is not allowing me to dress neatly or wear different clothes. My life is ruined," Arun quoted Sadhana as saying.

Janssen Biotech, Inc. (“Janssen”) announced today that it has entered into a license agreement with Astellas Pharma Inc. (“Astellas”) for the worldwide development and commercialization, except in Japan, of ASP015K, an oral, small molecule Janus Kinase (JAK) inhibitor. ASP015K is currently in Phase 2b development as a once-daily oral treatment for moderate-to-severe rheumatoid arthritis (RA), following a successful Phase 2a study demonstrating its potential in the treatment of moderate-to-severe plaque psoriasis.

“Janssen has a heritage of innovation and delivering transformative medicines to address unmet needs in immunologic diseases,” said Susan Dillon, Ph.D., Global Therapeutic Area Head, Immunology, Janssen Research & Development, LLC. “We are committed to expanding the portfolio of new treatments for patients with serious immune-mediated diseases and are excited to add Astellas’ ASP015K to our pipeline.”

Under the terms of the agreement, Janssen gains exclusive worldwide rights to develop and commercialize ASP015K, except in Japan, as an oral treatment for immune-mediated inflammatory diseases. In addition to an upfront payment, Janssen and Astellas have agreed to future milestone and royalty payments if certain development and commercialization milestones are achieved. Astellas will be responsible for completing the ongoing Phase 2b studies. Janssen will be responsible for all other development, clinical and regulatory filing activities in its territories. Astellas will continue development and commercialization of ASP015K in Japan.

About ASP015K
ASP105K is an oral, small molecule Janus Kinase (JAK) inhibitor, which blocks critical components of signaling mechanisms used by a number of inflammatory cytokines, including those that are believed to be important to mediating disease in people with immune-mediated inflammatory diseases. ASP015K is currently in Phase 2b studies evaluating the efficacy and safety of once-daily oral dosing in the treatment of moderate-to-severe RA. A Phase 2a study in the treatment of moderate-to-severe plaque psoriasis has been completed.

Source: janssenbiotech.com

Non-invasive mapping of the network of tiny blood vessels beneath the skin is now possible thanks to an advanced optics system and near-infrared imaging. The new technique could one day be used to quickly and efficiently reveal the latent signs of skin disorders, such as psoriasis or even skin cancer.

Teams based at the Medical University Vienna in Austria and the Ludwig-Maximilians University in Munich, Germany worked together on optical coherence tomography (OCT), which they say allows them to get under a patient's skin. "The condition of the vascular network carries important information on tissue health and its nutrition," explains team leader Rainer Leitgeb. "Currently, the value of this information is not utilized to its full extent." Of course, ophthalmologists have been using OCT since the 1990s to image different parts of the eye but it is only that the technology is finding application in dermatology.

The MUW team have now used OCT to look at the network of blood vessels in human skin that feeds cancerous skin lesions. They used a laser source developed by their collaborators at LMU to optimise the imaging. Importantly, the laser allowed them to obtain unprecedented high-speed images in the near-infrared which allowed for better penetration of the skin tissue overlying the blood vessels. The researchers tested the approach on various skin conditions, as well as imaging a healthy human palm. They looked at allergy-induced eczema on the forearm, dermatitis on the forehead, and two cases of basal cell carcinoma, which is the most common form of skin cancer. The OCT revealed very different patterns of blood vessels supplying the areas of skin with lesions compared to healthy skin.

The researchers explain that in the basal cell carcinoma study they see a dense network of unorganized blood vessels, with many larger vessels closer to the skin surface than normal. They can also see that the larger vessels branch into secondary vessels supplying tumour cells which are fast growing and have high oxygen and nutritional demands. Taken together with independent information about blood flow rates and tissue structure, it should be possible to use near-infrared OCT to obtain important insights into the metabolic demands of tumours during different growth stages. This would not only allow medical research to progress in this area but also provide oncologists with an additional means to "stage" a skin cancer and so offer appropriate and hopefully more effective treatment in a timely manner for their patients.

While the technique could have many uses in dermatology, the team suggests that it will likely have the widest use in the diagnosis and treatment of skin cancer. "We hope that improved in-depth diagnosis of tissue alterations due to disease might help to reduce the number of biopsies by providing better guidance," explains Leitgeb.

Of course, before it can become a valid clinical test, it will require fully controlled trials on many more patients to demonstrate efficacy. Nevertheless, OCT has many advantages over other imaging techniques primarily in that is non-invasive but it can also produce high-resolution images as well as doing that quickly. "High speed is of paramount importance in order to image lesions in vivo and in situ while minimizing the effect of involuntary patient motion," explains team member Cedric Blatter of MUW. An extra advantage is that the device shapes the light to form a Bessel beam, which is unhindered even if the beam is partially blocked as it is by the skin. It is therefore possible to ensure focus is maintained even to a depth of 1 millimetre, the team says.

Stiefel, a GSK (NYSE:GSK) company, today announced that the US Food and Drug Administration has approved a supplemental New Drug Application (sNDA) for Sorilux (calcipotriene) Foam, 0.005%. The sNDA expands the indication for Sorilux Foam to include the topical treatment of plaque psoriasis of the scalp in patients aged 18 years and older. It is not known if the product is safe and effective in people under 18 years old.

“Studies have shown that in at least 50 percent of psoriasis cases, the scalp is involved,” said Susan Learned, PharmD, MD, PhD, Medicines Development Leader, Dermatology Research and Development, Stiefel. “We believe this additional indication for Sorilux Foam will help meet the needs of both patients and physicians.”

The approval of Sorilux Foam for treatment of plaque psoriasis of the scalp was based on a multi-center, randomized, double-blind, vehicle-controlled pivotal Phase 3b study of patients with moderate scalp and body psoriasis. The most common side effects of Sorilux Foam were redness and pain of the treated skin areas. The incidence of these adverse reactions was similar between the body and scalp. It is for use on the skin only. It is not for facial, oral, ophthalmic, or intravaginal use.

Safety Information:
Patients should not use Sorilux Foam if they have been told by their doctor that they have a high level of calcium in their blood (hypercalcemia). The medicine in Sorilux Foam has been shown to cause hypercalcemia. If hypercalcemia occurs, patients are advised to stop using Sorilux Foam until calcium levels return to normal.

Sorilux Foam is flammable. Patients should avoid fire, flame, or smoking during and right after applying Sorilux Foam to the skin.

Patients should avoid excessive exposure of the treated skin to natural or artificial sunlight (including tanning booths and sun lamps). Patients are advised to wear a hat and clothes that cover the treated areas of the skin if they have to be in sunlight.

Patients should tell their doctor if they are breastfeeding. It is not known if Sorilux Foam passes into breast milk. Patients are advised not to apply Sorilux Foam to the chest area if they are breastfeeding a baby. This will help prevent the baby from accidently getting Sorilux Foam into his/her mouth.

Patients should tell their doctor if they are getting light therapy for their psoriasis.

Patients should tell their doctor if they have any other medical conditions.

Source: stiefel.com

I am currently covered from my head downwards with dry scaly patches that only psoriasis sufferers would recognise. Got asked yesterday if i had scabies!! made me want to run home and hide under my duvet. So many ignorant people out there but my self esteem is lost. Ive forgotten who i am all i think about is my skin. Its so hard as im itchy all the time my GP has been changed recently and my new one hasnt got a clue. She prescribed me a anti-histamine ffs. I feel like pretending to be a muslim and wearing a burkha. I have got so depressed and know i need help but have no one to talk to. If anyone has any advice i would take it gladly because im even crying while writing this. It will just be nice to talk to someone who is going through the same thing

Hi i am new to this forum. Am currently having a really bad flare up of psoriasis which is really getting me down. Am with a new partner who has not seen a flare up before so doesnt know how to console me. I just need to talk to people who understand what its like. I am currently covered from head to toe and the more i stress about it the worse its getting. have had pleanty of sleepless nights having been too itchy to sleep any advice would be very much welcome as i am my wits end and definately on the verge of depression.
thanks
charlene

OBJECTIVES:
The age of psoriasis onset has an important impact on the clinical expression and heritability of psoriasis. Psoriasis characteristics according to the age at disease onset have been extensively studied. However, the impact of the age of psoriasis onset on psoriatic arthritis (PsA) features has not been analysed in depth. The aim of the present paper is to analyse whether the age of psoriasis onset may have an impact on the clinical and genetic characteristics in a cohort of PsA patients.

METHODS:
The study included 110 PsA patients classified in accordance with the CASPAR criteria. Patients were divided into early (onset age <30 years) and late (onset age >30 years) onset psoriasis, and clinical features were studied in accordance to this stratification. Distribution of several genes within the MHC region were analysed in accordance with the prior stratification, and their frequencies compared to that of 110 healthy matched blood donors.

RESULTS:
Compared to patients with late-onset disease, PsA patients with early-onset psoriasis showed more frequently: a longer psoriasis-arthritis latency period (9.9±6 years vs. 3.8±4 years, p=0.0001), a positive family history of disease (60.3% vs. 20.5%, OR 6.1, 95% CI: 2.5-15.0, p=0.0001), severe psoriasis (PASI 8.2±4 vs. 3.6±2.2, p=0.0001), clinical enthesitis (37.7% vs. 22.4%, OR 2.09, 95% CI: 0.9-4.9, p=0.08), and oligoarthritis (47.5% vs. 28.6%, OR 2.26, 95% CI: 1.02-5.02, p=0.04). MICA-A9 was associated with susceptibility in both early-onset (60.7% vs. 30%, p=0.0002) and late-onset patients (59.2% vs. 30%, p=0.0008). However, HLA-Cw*0602 was significantly increased in patients with early-onset psoriasis (73.8% vs. 17%, p<0.0001), whereas the allele 384 of the microsatellite C1_4_4, located 34 kb telomeric to HLA-C locus, was increased only in late-onset cases (49% vs. 21%, p=0.001).

CONCLUSIONS:
Clinical and genetic features of PsA may differ depending on the age at psoriasis onset. This type of stratification should be considered in future genetic and epidemiological studies of PsA.

Source: nih.gov

Janssen Biotech, Inc. announced today the submission of a Biologics License Application (BLA) to the U.S. Food and Drug Administration (FDA) requesting approval of an investigational intravenous formulation of the anti-tumor necrosis factor (TNF)-alpha SIMPONI® (golimumab) for the treatment of adults with moderately to severely active rheumatoid arthritis (RA).

“We are pleased to present the FDA with an application supporting the efficacy and safety of an intravenous formulation of SIMPONI seeking its approval for the treatment of moderately to severely active rheumatoid arthritis,” said Jerome A. Boscia, M.D., Vice President, Head of Immunology Development, Janssen Research & Development, LLC. “Upon approval, an intravenous formulation of SIMPONI would offer rheumatologists and people affected by this chronic, immune-mediated inflammatory disease an important new treatment option, in addition to the currently available subcutaneous formulation of SIMPONI.”

The BLA is supported by findings from the Phase 3 Multicenter, Randomized, Double-blind, Placebo-controlled Trial of Golimumab, an Anti-TNF-alpha Monoclonal Antibody, Administered Intravenously, in Subjects with Active Rheumatoid Arthritis Despite Methotrexate Therapy (GO-FURTHER) trial, which evaluated the safety and efficacy of intravenously administered SIMPONI, in combination with methotrexate, via a 30-minute infusion at weeks 0, 4 and then every eight weeks compared with placebo in 592 adults. Study participants had been diagnosed with active RA, defined as having at least six tender and six swollen joints, and had been receiving background methotrexate for at least three months.

The primary endpoint of GO-FURTHER is the proportion of patients demonstrating 20 percent improvement in arthritis signs and symptoms (ACR 20) at week 14. Secondary endpoints include a 50 percent improvement in arthritis signs and symptoms (ACR50) at week 24, improvements in disease activity and physical function, as measured by the European League Against Rheumatism (EULAR)/Disease Activity Score (DAS) 28-C-reactive protein (CRP) and Health Assessment Questionnaire (HAQ), and inhibition of structural damage, as measured by X-ray.
Week 24 signs and symptoms, physical function and safety results from the Janssen R&D-sponsored study were presented at the 2012 EULAR Annual Congress and the study appeared in the June 2012 Annals of the Rheumatic Diseases.

Long-term data, including signs and symptoms, structural damage and safety analyses, will be submitted for presentation at a medical congress in the future.

An application requesting approval of an intravenous formulation of SIMPONI for the treatment of moderately to severely active RA is currently under review in the European Union (EU).

Source: janssenbiotech.com

Simponi is currently taken by injection under the skin once a month to treat psoriasis and psoriatic arthritis.

Hi Everyone

I just joined. It's great to meet and chat with people with the same woes.
It is good to know we are not alone!

I have a mild version of psoriasis mainly scalp and a little behind the ears. My daughter has a stronger version of the disease. We've been facing the challenges associated with psoriasis for about 3 years now.

I feel we'd be better able to succeed at winning this game when we are motivated by others who are in the same boat as us.

Hope to get to know this community better.



Anna Lockhart

I was wondering what peoples moisturiser routines where.

I often find if I use too much my skin can become very itchy, I used to do cling film wraps....cover my skin in loads of cream and then seal it with cling film, my skin would look great for a bit but then become so itchy I would scratch and cause more damage to new soft skin under the old flakes.

The other thing that worries me about over moisturising is skin is wetter than normal and I would of thought far more prone to infection?

I currently moisturise 2 or 3 times a day, first thing in the morning possible around lunch depending on the look and feel and then always after an early evening shower.
I never moisturise before bed as I think this makes me itchy and cause more damage.

I use epaderm cream mixed with savlon and have now started to add a small amount of Vaseline, I apply a thin covering which I rub in well and I try to avoid clothing till its mostly soaked in!

Do you do things differently? Just wondering if there are any good hints and tips?

Hi

New to the forum, thought i check it out. I have had psoriasis for a very long time now, no cream or other treatments are working for me at the moment, just wandering if anyone else is in the same boat. It sucks big time!! Any ideas or advice, would be great.

Thanks sairah x x x x

Hi, i joined last month but already learning so much about treatments others are using. I've decided to abandon prescription meds and went in search of natural treatments, oils and essential oils i've sofar found a great shampoo but am yet to find a good body lotion. The shampoo has altered my thinking on nat remedys. i think over the years the meds have thinned my skin and im not sure if the skin ever regains anyway i am over the moon my scalp p has gone. does anyone know of a body lotion i can try?

I found a matchbook from the 1960s for sale on an auction site. The matchbook had advertising for Tropisan an "Amazing Medical Tablet For Psoriasis" I have looked but can't find anything about Tropisan apart from they were in Chicago and I found another matchbook for sale on another auction site. I suppose they disappeared because it was the days before regulations on medication and advertising.

Hi everyone,

Here's a little introduction as I've literally just joined the website this evening. I came across Psoriasis club while browsing the web for some help/advice about Psoriasis earlier today.

The dreaded Psoriasis first appeared when I was 19 and on my year abroad from uni. A few patches first appeared on my scalp. I didn't know what it was so kept scratching it.

I'm now 35 and it has gradually got worse over the years, with patches popping up in more and more places. I've tried lots of creams/potions etc and although it has irritated me, it has never been as bad as it is now.

The patches in various areas are getting worse (as well as every single finger and toe nail). But it is my scalp which is becoming unbearable. It has just got to the stage where it is embarrassing to go and stay at a friends' house because when I dry or even just brush my hair, the amount of nasty white scale which descends to the carpet is just awful. I was drying my hair at my parents' house this weekend over my suitcase so it would all fall in there. This is not a normal way to live!
I'm hoovering every day, every time I dry/brush my hair and the itching is awful.

I have just had a rather stressful summer work-wise, so I guess it could be something to do with that. Anyway, my plan is to go to the GP now work is getting back to normal and seek an appointment with a dermatologist to change/update the creams etc that I'm on.

One thing I've heard about is Aloe Vera. A consultant was telling me how, if taken, externally and internally, it can really help. It is quite expensive though so I'm looking to see if anyone here has tried it?

So I'm glad I came across this website today when my Psoriasis is starting to get me down - people look at your patches and I don't like it!!

Nicky

So you thought living with psoriasis was hard. people stare at you, the bully you, they call you names, you can't go out and show your skin for fear of being looked at, you cant even talk to your own friends and family about your problem. We have all been there, and we have all at some point thought Why Me?

Well today I was talking to someone from another website that made me think, next time I feel like that (though I'm lucky it doesn't bother me to much) I will pop over and have another look at said website. Maybe you should have a look to.

The website in question is Changing Faces and yes I know I moan about you posting links on here, but today I have exchanged links with Changing Faces and you can find them in our Links page.

Go and have a look and then come back and say "I just can't go outside with my psoriasis looking like this"