There are so many psoriasis studies around that sometimes it gets confusing, and it's getting harder to get comparability and combinability of cohorts and data. This study suggests further harmonization of data collection is demanded.

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Background:
Safety and efficacy of new treatments are analyzed in clinical trials but their capacity to show potential effects of long-term treatment and more than short latency of onset is limited. To meet this challenge, patient registries (of treatments or diseases) collect prospective data of real-world patients in daily practice without tight selection of patients.

Objective:
The aim of this article was to identify existing psoriasis patient registries by published articles and evaluation of monitored treatment classes, patients, research questions addressed, and measurement instruments implemented.

Materials & Methods:
A systematic review of Medline (pub med) and Embase (Ovid) databases for publications on psoriasis patient registries, including cross-validation was conducted October 2015.

Results:
14 patient registries for long-term observation of psoriasis patients in real-world care were identified. Registries were established since 2005, the majority is located in Europe. The number of published studies from single registries ranged from 1 to 10. Most registries include patients treated by conventional systemics as well as biologics. The number of patients analyzed ranged from 35 to >12 000 patients. The publications mostly addressed safety issues or treatment outcomes, followed by baseline description, drug survival, predictor analyses, and treatment patterns.

Conclusion:
A variety of local, national, and international patient registries collect longitudinal data on (systemic) psoriasis treatment. The number of publications reflect the main registry objectives of safety and effectiveness, with additional therapy-related investigations being addressed as well. Based on the information from publications, the combination of data from these registries will involve many methodological challenges. To gain comparability and combinability of cohorts and data across registries, further harmonization of data collection is demanded.

I have read a lot of members going off topic discussing what their idea of being clear of psoriasis is

My idea of clear is what makes me happy. I having spent my life keeping covered up, but for the last 4 years I am what I regard as clear......I am happy to mix with people on the beach, go swimming at the pool, wear shorts and tee shirts without feeling self conscious ........and don't get strange looks from people

I have an odd small plaque on an elbow, and occasionally get a spot in my hair.....I can live with that...it keeps me on guard

So I regard clear as "virtually clear" I'm happy with that and I certainly won't strive or lose any sleep if it always stays that way

I would be interested in what others regard as clear or what level they are happy to live with the

This Danish study looked at Psoriasis and Type 2 Diabetes in 34 781 Twins aged 20 - 71.

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Importance:  
Psoriasis has been shown to be associated with overweight and type 2 diabetes mellitus. The genetic association is unclear.

Objective:  
To examine the association among psoriasis, type 2 diabetes mellitus, and body mass index (BMI) (calculated as weight in kilograms divided by height in meters squared) in twins.

Design, Setting, and Participants:  
This cross-sectional, population-based twin study included 34 781 Danish twins, 20 to 71 years of age. Data from a questionnaire on psoriasis was validated against hospital discharge diagnoses of psoriasis and compared with hospital discharge diagnoses of type 2 diabetes mellitus and self-reported BMI. Data were collected in the spring of 2002. Data were analyzed from January 1 to October 31, 2014.

Main Outcomes and Measures:  
Crude and adjusted odds ratios (ORs) were calculated for psoriasis in relation to type 2 diabetes mellitus, increasing BMI, and obesity in the whole population of twins and in 449 psoriasis-discordant twins. Variance component analysis was used to measure genetic and nongenetic effects on the associations.

Results:  
Among the 34 781 questionnaire respondents, 33 588 with complete data were included in the study (15 443 men [46.0%]; 18 145 women [54.0%]; mean [SD] age, 44.5 [7.6] years). After multivariable adjustment, a significant association was found between psoriasis and type 2 diabetes mellitus (odds ratio [OR], 1.53; 95% CI, 1.03-2.27; P = .04) and between psoriasis and increasing BMI (OR, 1.81; 95% CI, 1.28-2.55; P  = .001 in individuals with a BMI>35.0). Among psoriasis-discordant twin pairs, the association between psoriasis and obesity was diluted in monozygotic twins (OR, 1.43; 95% CI, 0.50-4.07; P = .50) relative to dizygotic twins (OR, 2.13; 95% CI, 1.03-4.39; P  = .04). Variance decomposition showed that additive genetic factors accounted for 68% (95% CI, 60%-75%) of the variance in the susceptibility to psoriasis, for 73% (95% CI, 58%-83%) of the variance in susceptibility to type 2 diabetes mellitus, and for 74% (95% CI, 72%-76%) of the variance in BMI. The genetic correlation between psoriasis and type 2 diabetes mellitus was 0.13 (−0.06 to 0.31; P = .17); between psoriasis and BMI, 0.12 (0.08 to 0.19; P < .001). The environmental correlation between psoriasis and type 2 diabetes mellitus was 0.10 (−0.71 to 0.17; P = .63); between psoriasis and BMI, −0.05 (−0.14 to 0.04; P = .44).

Conclusions and Relevance:  
This study determines the contribution of genetic and environmental factors to the interaction between obesity, type 2 diabetes mellitus, and psoriasis. Psoriasis, type 2 diabetes mellitus, and obesity are also strongly associated in adults after taking key confounding factors, such as sex, age, and smoking, into account. Results indicate a common genetic etiology for psoriasis and obesity.

Hi,

Just been to see my dermatologist today and have finally managed to persuade him that light treatment/ointments and creams are not working, he said he didn't want me to go on methotrexate so has prescribed me cyclosporine.
First time I've tried anything like this so I'm a bit unsure about it... The leaflet with possible side effects is of similar thickness to the bible!

Anyway he says this is a short term fix to try and get me clear then we can have a look at trying some biologic treatments.

Anybody had much experience with cyclosporine? i have quite a physical job down a mine and am just a bit worried it might knock me for six.

Cheers

Jamie 

This albeit small study looked at distress in patients with psoriatic arthritis and suggests, patients reported their condition is being dismissed or belittled by others and they therefore hide their distress from people around them.  

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Objective:
PsA is associated with significant distress and can be life-ruining. Reducing distress can improve quality of life and disease outcomes. Quality of life measures broadly identify the extent to which PsA impacts on people’s lives but do not enable clinicians to address PsA-specific distress in the setting of the clinic. The aim of this study was to explore people's illness beliefs, emotions and behaviours that relate to living with PsA and account for the distress experienced by those living with this condition.

Methods:
Semi-structured individual interviews were conducted in the UK with adults with PsA. Interview questions were theoretically informed by the Common-Sense Self-Regulation Model (CS-SRM). Two stages of data analysis, in line with thematic and framework analysis principles, involved coding pre-determined CS-SRM components and identifying any additional emergent themes. Constant comparison techniques allowed for patterns across CS-SRM components to emerge inductively from the data.

Results:
Twenty-four people with PsA participated (54% male; aged 27–71; time since onset ranged between 4 months and 29 years). Four core themes comprising clusters of illness beliefs, emotions and related behaviours emerged accounting for patient distress: restrictions, role of others, resentment and resignation. Suicidal ideation in the sample was commonly expressed and patients feared exponential degeneration of their condition. Patients reported the condition being dismissed or belittled by others and therefore hiding their distress from people around them.

Conclusion:
People with PsA experience significant disease-related distress, including suicidal ideation. Misperceptions, ineffective coping styles (e.g. avoidance/blocking) and negative emotions should be actively identified and addressed with people with PsA.

My husband had a kidney function of 9 on Tuesday and is in hospital. They have taken him off the psoriasis treatment which was Accitretin as they thought the Fumaderm was causing the kidney problem, when function dropped from 90-50! Dermo did say Acitretin which had been used before, would not control  the psoriasis but wanted him to take them until they could sort out the injections. However the function dropped even more when he was no longer on Fumaderm!

So we now have Eric coming home today or tomorrow on NO medication for the psoriasis and I think they may have taken him off the allupurinol as well for his gout. He is also not to take painkillers. He has to go back on Wednesday to see the nephro.

He is seeing the Dermotologist on Tuesday but has been told not to take anything until passing it by the Nephro.
Are injections likely to cause kidney problems? I realise that there are several options so this is just a general question.

I do think we specialists taking 'snapshots' and not really seeing the whole patient although I do accept that the kidney function of 9 was the most dangerous and needed to be sorted. They still do not seem sure what caused the sudden drop.......

But psoriasis can cause infections and very low quality of life..He literally could not walk this time last year and his skin was peeling off.
I do not know if anyone has co -morbidities and has been through similar things? I know that the injections are the last resort in the UK.
Thanks for reading. I shall print out the discharge from the unit and get husband to take it with him when he sees the dermo on Tuesday. It is going to be a difficult bank holiday!

Following on from this report Taltz (ixekizumab) gets FDA approval for Psoriasis  Taltz (ixekizumab) has now also been given approval for psoriasis in the EU.

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Lilly is expecting to start rolling out Taltz in EU countries from this summer and through to the end of 2018, taking into account the typical cycle times for reimbursement assessment.

The approved dosing regimen for Taltz is a 160mg subcutaneous injection, followed by an 80mg injection every two weeks for 12 weeks and then a maintenance dose of 80mg each month. In trials, around 90% of patients treated with Lilly's drug had a 75% or more clearance in skin lesions after 12 weeks, with the majority (80%) showing clear or almost clear skin.

While second to market after Cosentyx, some clinicians say the phase III data for the two drugs suggest that Taltz may have some efficacy advantages over Novartis' product - though no head-to-head comparison is available - and could allow it to mount a strong challenge.

This study suggests there is no need for exploration of alitretinoin in palmoplantar pustulosis.

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Background:
Palmoplantar pustulosis (PPP) is an inflammatory, debilitating skin disease. Topical drugs and systemic immunosuppressive agents are often ineffective. Previous uncontrolled studies have suggested that alitretinoin could be a meaningful treatment option for PPP.

Objectives:
The primary objective was to determine response to alitretinoin for the treatment of PPP based on the Palmoplantar Pustulosis Area and Severity Index (PPPASI) after 24 weeks of treatment.

Methods:
A phase II, randomized, double-blind, placebo-controlled, multicentre study. Adult patients with PPP (with or without psoriasis) refractory to topical therapy and standard skin care were randomized 2:1 to alitretinoin 30 mg once daily or placebo for up to 24 weeks. The primary end point was PPPASI at week 24 (or the last visit in case of early withdrawal). Secondary end points included: percentage change from baseline in the modified Psoriasis Area and Severity Index (mPASI); percentage of patients with ≥ 50% or 75% improvement in PPPASI or mPASI scores from baseline; change in pustule count on the palms and soles; change in the Nail Psoriasis Severity Index and safety and tolerability assessments.

Results:
Thirty-three patients were randomized: 24 patients to alitretinoin 30 mg and nine to placebo. Overall, there were no significant differences between alitretinoin 30 mg and placebo for any end point. The safety profile was consistent with that seen in patients with chronic severe hand eczema refractory to potent topical corticosteroids.

Conclusions:
Although the results were unexpected based on previous studies of alitretinoin in the treatment of PPP, this study provided no evidence to support further exploration of alitretinoin in the treatment of severe PPP.

Following on from this thread MALT1 gene could be new target in psoriasis you may also find this interesting.

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Background:
The CARD14 gene encodes a protein that enhances nuclear factor (NF)-κB activation and the upregulation of proinflammatory pathway genes. CARD14 is upregulated in psoriatic vs. normal skin, and rare and common CARD14 variants have been associated with the risk of developing psoriasis. Our hypothesis was that CARD14 variants could also influence the response to antitumour necrosis factor (anti-TNF) therapies among patients with psoriasis.

Objectives:
To determine whether CARD14 gene variants were linked to a significant positive anti-TNF response in patients with psoriasis.

Methods:
DNA from 116 patients with psoriasis was subjected to next-generation sequencing of the CARD14 gene. All of the patients were nonresponders or had contraindications to conventional systemic treatments.

Results:
A reduction of at least 75% in Psoriasis Area and Severity Index (PASI 75) at week 24 was considered a positive response to treatment. In total 116 patients (79 responders and 37 nonresponders) were next-generation sequenced, and we identified five nucleotide variants that would result in missense amino acid changes. These variants were determined in all of the patients, and allele and genotype frequencies were compared between the two groups. We found a significantly higher frequency of rs11652075 CC (p.Arg820Trp) among the group with a positive response (P = 0.01, odds ratio 3.71, 95% confidence interval 1.30–10.51). Furthermore, among responders, six patients were heterozygous carriers of the rare p.Glu422Lys variant, and two patients were heterozygous for p.Arg682Trp (P = 0.04).

Conclusions:
The common CARD14 p.Arg820Trp variant might have a significant effect on the response to anti-TNF therapies among patients with psoriasis. In addition, rare CARD14 missense variants could also predispose to a better response.

This study suggests the MALT1 gene could be a possible new target to help those with psoriasis.

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Mutations in CARD14 have recently been linked to psoriasis susceptibility. CARD14 is an epidermal regulator of NF-κB activation. However, the ability of CARD14 to activate other signaling pathways as well as the biochemical mechanisms that mediate and regulate its function remain to be determined.

Here, we report that in addition to NF-κB signaling, CARD14 activates p38 and JNK MAP kinase pathways, all of which are dependent on the paracaspase MALT1. Mechanistically, we demonstrate that CARD14 physically interacts with paracaspase MALT1 and activates MALT1 proteolytic activity and inflammatory gene expression, which are enhanced by psoriasis-associated CARD14 mutations.

Moreover, we show that MALT1 deficiency or pharmacological inhibition of MALT1 catalytic activity inhibits pathogenic mutant CARD14-induced cytokine and chemokine expression in human primary keratinocytes.

Collectively, our findings demonstrate a novel role for MALT1 in CARD14-induced signaling and indicate MALT1 as a valuable therapeutic target in psoriasis.

This study shows that the paracaspase MALT1 is indispensable for CARD14-induced NF-κB and MAP kinase signaling. Pharmacological inhibition of MALT1 prevents pro-inflammatory gene expression in primary keratinocytes induced by psoriasis-associated mutation of CARD14.

Read this in the monthly paper of Sanquin.


Sanquin, Dutch blood institute, participates in a British consortium, PSORT, Psoriasis Stratification to Optimize Relevant Therapy. Dermatologists, researchers, pharmaceutical organisations but also patients are here in United to try to Optimize the therapy with biologicals. The consortium received 5 million pounds in 2013 from the English medical research council and another 2 million of the industrial partners.

People with serious forms of psoriasis benefit from the treatment with biologicals. This new class of medication is very expensive, estimated costs 15.000 per patient per year. Unfortunately part of the patients does not respond well. Possible reasons are genetic background, too low medication levels because of metabolic variations of the forming of antibodies against the medication. PSORT strives for personalised treatment, that holds this and other factors into account.
This results in optimal clinical results, but also in insight in other less common immune diseases as well as a cost reduction in health care.

With the division research, dr. Karien Bloem and dr. Theo Rispens are involved with PSORT. And From diagnostics dr. Annick de Vries with her biologicals lab. Direct corporation in Great Britain is going via doctor-researchers from the Kings College in London and from the university of Manchester. "We are very happy that we found a lab that is able to measure medication as well as anti-drug antibodies combined with the expertise of Sanquin Research on the area of immunogenicity. Together with other parameter that we study with the consortium these tests are an easy and cheap way to support personalised medication". Sanquin is busy developing a blood-spot technique for PSORT so patients can take their blood at home and inform their consultant for adjusting the personalised treatment.

I am currently taking Methotrexate (MTX) and its shortcomings are well documented. Having to take bloods regularly, reducing alcohol intake etc etc. Fortunately I have not had any side effects apart from perhaps being slightly more susceptible to catching a cold and struggling to shake it off. Currently struggling to get rid of a cough after a chest infection.

The reason I believe MTX is the drug of choice for starting with psoriasis sufferers is that it is cheap and generally effective. I believe there are several drugs that could be used for the first round with differing degrees of effectiveness. I recal three but can't remember the names but MTX was said to work 80% of the time with the next closest only 50% effective.

I am aware of other drugs like humira, stelara, fumaderm etc but how do they all fit into the cost benefit model and which have the easiest administration and least side effects. Obviously there may be some very expensive drug with no side effects that you only take once a month but you would be unlikely to get that prescribed as a first choice.

Ideally I think a list of treatments, pros and cons, cost might be helpful. Obviously different treatments may cause different side effects in different people but from and ease of use I am thinking which has least impact on lifestyle, ie allows you to drink and not require blood tests etc.

Hello all,


I'm new to this 'sharing my Psoriasis pains with the world' concept, so please bare with me.

I'm a 39 year old retired Firefighter that was only diagnosed with Plaque Psoriasis after being burned in a structure fire in 2002. I also have Lupus Nephritis.  
It has been one of the biggest challenges of my life. Today, I have roughly 80% of my body covered, not so flaky, but red.
I have tried Embrel and Otezla without success. I am currently undergoing UVB light treatment once a week. This coming week I will begin using Cosentyx. 
Based on some of the responses within the group, I am feeling more confident about this treatment.

I will post my experiences as I progress with the treatment.

Thank you all.

Ric

Hi everyone, 

new to the site so first of all just wanted to introduce myself. 

I am 30 and have suffered with severe psoriasis for about 16 years now... I've pretty much got it everywhere.
Up until a couple of years ago i had managed to control it with light treatment after spending a small fortune on a aramid B (i think) sunbed, unfortunately the treatment slowly stopped working and now doesnt work at all. 

Since my psoriasis came back it has affected everything i do, can't sleep, can't shower at work, can't play football anymore because of the pain, its awful, its basically ruining my life at the moment. My doctor has been prescribing me all sorts of steroid ointments and creams that have been having no affect whatsoever..... I'm running out of patience, i want to try something stronger and have been reading about biologics and systemic treatments but my doctor for some reason seems reluctant to prescribe me anything.

So the reason I've signed up is to find out if anyone has had any joy getting any of these kind of treatments through private healthcare??? I am insured through work with axa private healthcare and am contemplating giving it a go..... i can't take anymore ruined clothes/bedsheets from the ointments anymore with 0 results!!

Anyway... any shared experiences would be much appreciated 

Cheers

Jamie

That's very interesting and a bit disturbing, but not surprising, thank you for posting that, it will give users something to ponder  

Now don't get too excited. This is not one of my short stories.
In a serious vein, I've been thinking about the future. Whilst I'm not in a position yet to start thinking about dating (much too early after the break up) I do realise that one day I will be.
But the thought of attempting a new relationship whilst managing psoriasis seems like an insurmountable obstacle.
My relapses, inability to work and general appearance are going to seriously limit my eligibility. Or am I making mountains out of molehills here?
Anyone got any experiences/ advice to share?

This study set out to analyse serum total IgE levels in addition to the presence and distribution of IgE and FcεRI in psoriatic lesions, and to investigate alteration of IgE and FcεRI after successful systemic treatment.

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Background:
Although elevated serum IgE levels have been reported in psoriasis, the role of IgE in psoriasis still needs to be clarified.

Objectives:
To analyse serum total IgE levels in addition to the presence and distribution of IgE and FcεRI in psoriatic lesions, and to investigate alteration of IgE and FcεRI after successful systemic treatment.

Methods:
Total serum IgE levels were determined using enzyme-linked immunosorbent assay. The expression and localization of IgE and FcεRI was investigated using immunohistochemistry and double immunofluorescence.

Results:
Elevated total serum IgE levels were found in 39% of patients with psoriasis. The levels of total serum IgE were significantly higher in male patients compared with female patients. Furthermore, total serum IgE levels decreased after successful systemic treatment. A positive correlation between IgE+ and FcεRI+ cells and a significant increase of these cells was found in psoriatic lesions when compared with normal skin. Interestingly, IgE+ and FcεRI+ cells decreased significantly after successful therapy with ustekinumab. IgE and FcεRI were coexpressed on mast cells, epidermal Langerhans cells, dermal dendritic cells, macrophages and a small number of neutrophils.

Conclusions:
IgE might participate in the development of psoriasis by activating FcεRI-bearing cells.

Hi I am new to this! 
I've suffered with pustular psoriasis on my hands and feet for nearly 3 yrs now. I've tried every cream, light therapy but still no relief so I was put on Methotrexate which gave me horrendous side effects which is why I was given Humira which I've been on for about 4 wks so far. In that 4 wk period my psoriasis has gone from almost clear to out of control and spreading everywhere else so I have had to start taking the methotrexate again along side it in the hope it stops it spreading further. Back to square one. I have tried a few natural products and detox which I think helped in the past so will be trying that again.
I'm still new to psoriasis and how it can affect you, would really appreciate any advice especially from someone with pustular psoriasis, comments appreciated.
Sam

I would never have said that I was the brainiest person, but PHEW, trying to get onto this forum is a job of its own.

Hello Folks, Just wanted to say hi, this is the first time I have come across a psoriasis forum, really pleased.