Hi, just an update from my intro. I was on Otzela for 9 months. No side effects to speak of but didn't do much for the Psoriasis so moved onto Cosentyx.

Last week I received a letter through the post inviting me to help rid the world of Psoriasis. Now as far as I am concerned this lot are a bunch of charlatans and no way would I end up in their clutches. How they got my details and the fact that I have psoriasis isn't something I want to discuss on an open forum.

But it got me thinking what would it take for you to join a trial.

For me nothing less than a recommendation by my Dermy Consultant and their assurances to the efficacy of the trial would suffice.

New guidelines are out for the treatment of psoriasis in France. It's very long so I will try and pick the bones out of it by making two posts.

Quote:

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These guidelines were developed by the psoriasis research group of the French Society of Dermatology with the aim of providing updated decision‐making algorithms for the systemic treatment of adult patients with moderate‐to‐severe psoriasis.

The initial working group was made up of three dermatologists, without any conflict of interest with the pharmaceutical industry. The first version of the manuscript was reviewed by nine dermatologists, all of whom were experts in the field of psoriasis management. The final document was then reviewed by public and private practice practitioners involved in psoriasis treatment. Thirty four practitioners and two patients were also involved.

The guidelines recommend that systemic therapy, including phototherapy, should be proposed to patients with any form of psoriasis meeting one of the following criteria:

• The disease is considered to be moderate‐to‐severe, defined as psoriasis covering over 10% of the body surface area (BSA), or resulting in a psoriasis area severity index (PASI) score >10 and/or a dermatology life quality index (DLQI) score >10;
  
• The disease has a significant impact on physical and social well‐being, or on psychological well‐being resulting in disease‐related clinically relevant depression or anxiety;
  
• The disease is localized but cannot be controlled with topical therapy and is associated with significant functional impairment and/or high levels of distress, e.g. severe nail disease or involvement at high‐impact sites (such as the palms and soles, genitals, scalp, face and flexures).
  

We recommend that if the patient meets one of the criteria for initiating a systemic treatment, then methotrexate should be proposed as the preferred therapeutic option (Expert opinion). Exceptions to this recommendation include:

• Patients for which there is a contraindication to the use of methotrexate (Expert opinion);
  
• Patients that are pregnant, breastfeeding, or plan to have child in the near future (men and women); we recommend that cyclosporin is used instead of methotrexate for treatment of these patients (Grade A);
  
• Patients for whom there is a need for short‐term disease control; we recommend that cyclosporin is used instead of methotrexate for treatment of these patients (Grade B).
  

Narrowband UVB phototherapy (NBUVB) can also be prescribed as a first‐line treatment (Grade A). Home‐based NBUVB is not currently available for use in France; however, where it is available we recommend that it is offered to compliant and adherent patients who are unable to follow a clinic‐based phototherapy schedule (Grade B). For patients with large thick plaques, we recommend the use of psoralen UVA phototherapy (PUVA) or re‐PUVA therapy rather than NBUVB, except in young female patients (Grade C). The addition of acitretin to PUVA therapy is an option in case of failure to respond to PUVA alone (Grade A).

As a result of its lower efficacy compared to other available treatments, acitretin should not be recommended as a monotherapy in the systemic treatment strategy for plaque psoriasis. However, we concluded that it may be beneficial to propose acitretin as a treatment option for some patients with methotrexate and cyclosporin contraindications (Expert opinion).

Biologic agents are not labelled in France as first line therapies, but as a treatment options for adults with moderate‐to‐severe psoriasis who have not responded to at least two standard systemic therapies, or if the patient is intolerant or has a contraindication to these treatments. Thus, biologic agents could not be proposed as first line therapies in the present algorithm.

We recommend that biological agents and apremilast are prescribed only after the contraindication of, intolerance to or failure of two systemic treatments, such as methotrexate, cyclosporin, or phototherapy. No consensus was reached as to whether or not acitretin should be included with methotrexate, cyclosporin and phototherapy in the list of the two failed or contraindicated systemic treatments.

Given the low efficacy of apremilast compared to biological agents and the risk of some potentially severe adverse events associated with apremilast therapy, we recommend that therapeutic strategies using biological agents are explored prior to initiating systemic treatment with apremilast (Expert opinion). Further studies are required to establish a place for apremilast in the therapeutic armamentarium.

Taking into consideration the short‐term and long‐term efficacies, the long‐term safety and tolerability assessments, the administration regimens and the drug survival rates of the available biological agents, we suggest that adalimumab or ustekinumab should be the preferred first‐line biological agents (Expert opinion). If treatment goals are not achieved, switching between these agents (i.e. from ustekinumab to adalimumab or another TNF inhibitor, or vice versa) or initiation of IL‐17 inhibitor therapy should be considered (Expert opinion).

It should be noted that the initiation of a biosimilar should be based on existing national guidelines, such as those published in France on the status of biosimilar medicines.

New recommendations for patients with comorbidities or special circumstances, such as patients with an alcohol addiction or breastfeeding mothers have also been generated.

New recommendations are also generated for patients with psoriatic arthritis: We propose categorizing patients according to two major clinical profiles. The first clinical profile would include psoriasis patients for whom skin involvement predominates over PsA. In such patients, we recommend that adalimumab or ustekinumab are used as first‐line biological agents, similarly to patients with plaque psoriasis. The second clinical profile would include patients for whom PsA predominates over cutaneous involvement. In such patients, we recommend that a TNF inhibitor is used as a first‐line biological agent.

Unmet needs in the French psoriasis guidelines
Several questions could not be addressed in the present recommendations as a result of a lack of evidence‐based data. Notably, we were not able to provide satisfactory answers to the following questions.

• What is the exact place of apremilast in the therapeutic armamentarium?
  
• How long before and after surgery should apremilast be tapered?
  
• Should methotrexate be prescribed in association with biologic agents?
  
• In patients treated with biological agents who experience complete clearing, is it possible to adjust or stop the treatment? What would be the best strategy; a gradual or immediate stop?
  

*Further studies are necessary to provide clear answers to these questions.

Ok... today I start my journey with Skilarence after previously having fantastic results with Fumaderm. If you're interested in reading my experience with Fumaderm it's documented here: Fumaderm side effects - my worst case senario

I went to the derm yesterday and after checking my baseline bloods they said I was good to go on them. No numbers were mentioned about my bloods apart from that I have higher than normal haemoglobin levels.

So, tonight I will take my first tablet and I'll pray that I have an identical reaction as I did to Fumaderm, as I only had flushing and nothing else and managed to get 100% clearance on just one full strength tablet a day. 

The build up last time was incredibly slow whereas this time they want me to go the normal route of upping the tablets each week instead of every 2 weeks like last time.

So fingers crossed and I'll be sure to keep you guys updated as usual.

Hi all

Some of you might know that I was diagnosed with pustular psoriasis on my hands and feet............................................well I'll give you a bit of a timeline.

April 2017 - hand and feet were awful - I was panic stricken pics below (be prepared to be alarmed!!):-





So as some of you may know I had PUVA and started on Acitretin around July 2017 and to be honest PUVA felt like it was burning my hands and feet, but I have to say but once everything calmed down I haven't had one spot on either my hands or feet and since around October 2017 my hands have been like below:-


My feet have been totally clear too.............

I have to say I am totally at a loss - and don't think for one second that i am not grateful for these results, begs the question do i have pustular psoriasis??

I am so confused - is it is a combination of PUVA and Medication (Acitretin) or was I misdiagnosed?  We are talking about October 2017 I have been clear.

As a consequence, I have decided to reduce my medication (as I think acitretin is making me feel awful) so currently I am only taking a 10mg tablet every other day and all being well I hope to reduce it further over a long period of time. 

I was luckily enough to see one of the top consultants dealing in pustular psoriasis so I was totally guided by him but to not have a flare up (not one spot) for 16 months, I am either really really really lucky or i don't know what really......

As I said i am so pleased that I haven't had a flare up but not sure where to take this now?  I do see the Consultant Derm every three months so i will ask him when I see him in March but just really confused I guess????

Thoughts on reducing medication (have reduced this over the last 4 weeks) and i guess did I only maybe have a mild version of it OR did I even have it in the first place....

So confused (but so happy at the same time with lack of spots of course)!!!

Appreciate that most of you who post don't have pustular psoriasis but interested to know your thoughts on reducing medication......

Wooley

Hello everyone, 

I’m new to this forum, but I had a question that I couldn’t find anywhere else on the internet. Last Wednesday I started my 1st injections of Cosentyx. Other than feeling tiredness, I haven’t had any side effects...until today. I was sitting down not doing anything and all of a sudden a feeling of passing out came over me. I laid down and the feeling lingered about  20 mins on and off. Now I feel ok but it really scared me. I’m wondering if anyone else has had this reaction? Another thing I’ve developed since yesterday is lower back pain and diarrhea. I’m pretty upset becuse ive been dealing with Psoriasis since i was about 10 years old and psoriatic arthritis the last 12 years. This is my first time trying Biologics...

Greetings,

I have my 2nd weekly starter dose for Cosentyx this evening; however, I've been struggling with a cough and fever for about six days. Curious if I should take the treatment or skip the dose?

Hello,

How is this accomplished? Does stress really have a significantly negative impact on Psoriasis?

Thanks for the help!

Hello everyone!

What brand of lotion works for you? I've tried countless natural brands (including oatmeal variants, Mother of all Creams, etc.) and every single one feels like a chemical burn for about an hour after applying.

Thoughts?

Hello All,

So glad there is a board with others to empathize. A little background...

I contracted Psoriasis during Desert Storm in 1990 from CARC and depleted uranium and was sick with a 103.4 degree temperature for two weeks. I was hospitalized and flown to Weisbaden, Germany for observation. My military medical record concludes with "...probable bacterial syndrome". Needless to say, I've had an open case with the VA for over 25 years and have been denied service connection five times.

With that stated, I've felt my "Psoriasis" has been misdiagnosed and unique. The reason is due to all the "successful" therapies and medications I've taken over three decades ranging from: natural therapies, Otezla, Stelara, Humira, Enbrel, Corticosteroids and various light therapies. None have been successful and have resulted in unique side effects (e.g. psoriatic "doughnuts" on my skin, extreme behavioral changes, etc.). My "coverage" has ranged from 20% to 90% and is asymmetric.

My latest visit to the doctor resulted in prescribing Cosentyx with 8 syringes as a "loading dose".

I am curious if anyone has experiences these strange symptoms, had similar side effects or contracted Psoriasis in the military. Also, what should I expect from taking Cosentyx.

Thanks for the advice and I welcome your comments.

Hi all

Looking for some advice please.
I'm recently diagnosed with psoriasis.. I'm experiencing swelling of my legs mainly where's the bigger patches are, and my feet. I do have hypertension and I'm on losartan and a diuretic. My doc said my blood pressure meds is not the cause of the swelling as the class of drugs it is, it shouldn't give me that side effect.  Doc said it's the inflammation of the psoriasis? Not sure please help.

I think i have severe facial Psoriasis (around both eyes) . Derm thinks it might be periorificial dermatitis , shes put me on anti-bios. I've my doubts 

10th day of taking Anti-bios and its getting worse

it burns and feels like its on fire at times 

Anyone any experience with this ? 

Help appreciated

It is clear that one of the causes of Psoriasis is a genetic dependency of one of your ancestors and that in that cases it is very wel possible that siblings or other family also can have Psoriasis (or Psoriatic Arthritis of course), be it brothers or sisters, or nephews, nieces  and cousins.

But... it is a bit unclear if this is the only cause. Or that there would always be a genetic component necessary for getting Psoriasis.
As Fred always says: “Anyone can get Psoriasis.”, and I myself think that there are more causes, at least bacteriological causes, that make it possible that you will get Psoriasis  at a certain moment in time.

I wonder how this is with the members of Psoriasisclub. Do you have ancestors or siblings or perhaps children who also have Psoriasis? Or do you think there is no genetic cause involved in your Psoriasis?

Therefore I made a poll, where you can tick one or more possible relations or no relation at all.

I hope you like this approach and maybe it will tell us something. I have set the time limit of the poll to 30 days which should give most of the regular visiting members a possibility to vote.


Caroline

Hi all

My name is liezel, i live in cape town, South Africa.I have just been diagnosed with psoriasis. Honestly I don't even know what kind I have. The dermatologist I'm seeing is treating me with creams that i honestly feel is not working. I'm mostly covered in hot red spots on my legs and thighs.. I'm currently suffering from intense burning that is non stop. I'm feeling extremely overwhelmed at the moment as there is a world of information out there and I honestly don't know where to begin. 
But thank you for all the posts I read it helps a lot. I don't think people know how this disease affects you emotionally. 
Being a mom and having to cope with this while still being productive at work and a great mom is hard. 
I'm hoping that you guys can give me some tips on how to cope.

Thanks 
Liezel

This study looked at the. impact of having family history of psoriasis or psoriatic arthritis (PsA) on psoriatic disease.

Quote:

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Objective:
Psoriatic arthritis (PsA) has a genetic background. Approximately 40% of patients have a family history of psoriasis or PsA, which may affect disease features. The aim of this study was to assess the effects of family history of psoriasis and PsA on disease phenotypes.

Methods:
The data from 1393 patients recruited in the longitudinal, multicenter Psoriatic Arthritis‐International Database (PsArt‐ID) were analyzed. The effects of family history of psoriasis and/or PsA on characteristics of psoriasis and PsA were investigated using logistic regression.

Results:
Four hundred‐forty‐four (31.9%) of patients had family history for psoriasis and/or PsA. These patients were more frequently women, had earlier onset of psoriasis, more frequent nail disease, enthesitis, deformities and less frequently achieved minimal disease activity (MDA). Among 444, 335 patients only had psoriasis in their family, 74 had PsA and 35 patients were not clear therefore excluded from further analysis. In multivariate analysis, family history of psoriasis was associated with younger onset of psoriasis (OR: 0.976) and presence of enthesitis (OR: 1.931) whereas family history of PsA was associated with lower risk of plaque psoriasis (OR: 0.417) and higher risk for deformities (OR: 2.557). Family history of PsA vs psoriasis had increased risk for deformities (OR: 2.143) and lower risk for plaque psoriasis (OR: 0.324).

Conclusions:
Family history of psoriasis and PsA has impacts on skin phenotypes, musculoskeletal features and disease severity. The link between family history of psoriasis/PsA and pustular/plaque phenotypes may point out to a different genetic background and pathogenic mechanisms in these subsets.

This study suggests the monitoring of distinct T cell subsets rather than just absolute lymphocyte counts may provide more meaningful insights into both the treatment safety and efficacy of Fumaric acid esters (FAEs) especially in psoriasis patients of middle to older age.

Quote:

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Background:
Fumaric acid esters (FAEs) are used to treat psoriasis and are known to cause lymphopenia in roughly 60% of the patients. Much remains to be elucidated about the biological effects of FAEs on lymphocytes.

Objective:
To evaluate the influence of long‐term FAE (Fumaderm®) treatment on peripheral blood CD4+ and CD8+ T cells, CD19+ B cells and CD56+ natural killer (NK) cells in psoriasis.

Methods:
In this single‐centre retrospective observational subcohort study, we obtained leucocyte and lymphocyte subset counts before initiating FAE therapy in 371 psoriasis patients (mean age, 47.8 years; 63.3% males) and monitored them during treatment (mean treatment duration, 2.9 years). Multiparametric flow cytometry was used for immunophenotyping.

Results:
FAEs significantly reduced the numbers of CD4+ T, CD8+ T, CD19+ B, and CD56+ NK cells. Among lymphocyte subsets, the mean percentage reduction from baseline was always highest for CD8+ T cells, with a peak of 55.7% after 2 years of therapy. The risk of T cell lymphopenia increased significantly with the age of the psoriasis patients at the time that FAE therapy was initiated. It was significantly decreased for the combination therapy with methotrexate and folic acid (vitamin B9) supplementation. Supporting evidence was found suggesting that T cell lymphopenia enhances the effectiveness of FAE therapy.

Conclusions:
Monitoring distinct T cell subsets rather than just absolute lymphocyte counts may provide more meaningful insights into both the FAE treatment safety and efficacy. We therefore suggest optimising pharmacovigilance by additionally monitoring CD4+ and CD8+ T cell counts at regular intervals, especially in patients of middle to older age. Thus, further prospective studies are needed to establish evidence‐based recommendations to guide dermatologists in the management of psoriasis patients who are taking FAEs and who develop low absolute T cell counts.

Do any of our members donate blood ?

I was talking with Mrs Fred about donating blood and the fact that we have never been able to donate blood in France. As far as I know we still can not donate because we lived in the UK between 1980 to 1996 and they wanted to remove the risk of Mad Cow. (No I'm not getting into the politics of it all)

I also said that I doubt I would be able to donate blood anyway as I have been on Bio's for around 12 years, I also don't think anyone taking Oral or Bio treatments for psoriasis can donate. But it got me thinking and I don't know if any of our members do donate blood.

Thoughts ?

Hi all,

I hope all is well. After the initial saga of trying to source Skilarence privately, I found that SuperDrug stocks it at roughly half the price of anywhere else, so decided to give it a shot in the first instance.

So far so good, with limited side effects, although last night I did get a hot flush in the middle of the night which woke me up as it was uncomfortable against my pillow. I was wondering if anybody had any tips for either heading these off or managing them once they hit? It didn’t last more than about 20 minutes but It wasn’t a pleasant experience!

This study suggests improved Psoriatic Arthritis (PsA) screening is needed in patients with Psoriasis (PsO)

Quote:

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Background:
Despite increasing awareness of the disease, rates of undiagnosed psoriatic arthritis (PsA) are high in patients with psoriasis (PsO). The validated Psoriasis Epidemiology Screening Tool (PEST) is a 5‐item questionnaire developed to help identify PsA at an early stage.

Objectives:
To assess the risk of possible undiagnosed PsA among patients with PsO and characterize patients based on PEST scores.

Methods:
This study included all patients enrolled in the Corrona Psoriasis Registry with data on all 5 PEST questions. Demographics, clinical characteristics, and patient‐reported outcomes were compared in Corrona Psoriasis Registry patients with PEST scores ≥ 3 and < 3 using t‐tests for continuous variables and chi‐squared tests for categorical variables; scores ≥ 3 may indicate PsA.

Results:
Of 1516 patients with PsO, 904 did not have dermatologist‐reported PsA; 112 of these 904 patients (12.4%) scored ≥ 3 and were significantly older, female, less likely to be working, and had higher BMI than patients with scores < 3. They also had significantly longer PsO duration, were more likely to have nail PsO, and had worse health status, pain, fatigue, Dermatology Life Quality Index, and activity impairment.

Conclusions:
Improved PsA screening is needed in patients with PsO because the validated PEST identified over one‐tenth of registry patients who were not noted to have PsA as having scores ≥ 3, who could have had undiagnosed PsA. Appropriate, earlier care is important because these patients were more likely to have nail PsO, worse health‐related quality of life, and worse activity impairment.

Hey all, never been in anything like this before, got diognosed with psoriasis in 2002 but recently having a bad breakout, sick of itching getting me down and just wanted to meet and chat to people who understand. I'm Carla by the way x