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Welcome to your April newsletter. As you will see later in the newsletter Fred has been busy gathering lots of information about new treatments coming on line so well worth reading on, many members have updated their threads, and several new members doing introductions, it's good when new members make an effort and introduce themselves to us, if you haven't already been on to say hi to these members, please do as I'm sure it will make them feel comfortable
I hope that your psoriasis is under control and the treatment you are on is still working well, if not why not come and talk about it, we would be delighted to see you back if you haven't been for a while
I'm always looking for ideas to improve the newsletter if you have a suggestion contact me or if you prefer any of the helpers HERE
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This Months Stats.
19 New Members | 50 New Threads | 1632 New Posts | 3 Newsletter subscriptions
Please look at these introductions and come and welcome the new members that have taken the trouble to write an introduction. Newbie intro by SadieMae1 .... Hello everyone l
I’m from the State of Georgia in the USA. I’m excited to be a part of this fourm. I was first diagnosed with PsA back in 2016. After Methotrexate and Enbrel failed me, my Rhematologist prescribed Cosentyx. I injected 150 mg last Friday. On Saturday out of know where I became so overwhelmed that I was going to pass out. It was so scary. Then I had bad stomach pains and cramps. Then here comes the diarrhea. I started to feel a little better until about 10 minutes later ... this horrible nausea came over me. I projectile threw up .......
Read the rest here Lars53 wrote ..... Alex intro Hi everyone
So I have suffered with Psoriasis for around 5 years but my diagnosis was made 4 years ago (ish).
I have tried all of the recommended Creams and tablets such as Methotrexate, Cyclosporine, Apremilast and Acitretin.
Some of the above tablets worked a little, my main issue has pretty much been the side effects of the tablets, ranging from dark thoughts on the Apremilast to Nausea and sick feeling on the Methotrexate. (Bear in mind this is just my experience on the tablets and I am sure not everyone will have the same reaction).
I have recently started on Cosentyx and am on Week 3 of the weekly two 150mg injections (you have a weekly two injections for five weeks and then go monthly).
Read more here Dani.chan writes Hi my name is Dani
I am 18 years old and I have Scalp Psoriasis.
I grew up in Yokosuka City, Kanagawa, Japan but I am currently in the Philippines studying. The first time I noticed flaky patches on my scalp was about 8 months ago when I was still in Japan. I had an auntie who works at a derma clinic and provided me topical creams to cure it so I never had to buy one from the drugstore. It worked and everything was okay, until February this year.
The heat's too strong here in the Philippines so I decided to tie my hair up in a bun. My blockmate noticed flaky patches and asked me what they were and I was so embarassed. ?
Read more here Fialstar write Hi from Australia
I found this forum by accident while searching for information and communities on PsA and psoriasis.
I am almost 51 years old and have had plaque psoriasis from the age of 2. Recently sortof diagnosed with psoriatic arthritis within the last 18 months - I say sort of, because I have had various diagnosis from a few different doctors but no definitive dx from any of them.
My skin has been clear of plaques for over 10 years, but I have distal joint deformities, nail issues, slight joint pain, and a whole slew of what I now know are possible comorbidities (early onset osteopenia, anaemia, skin cancer, etc).
I was prescribed sulfasalazine by my dermatologist which did nothing, and have been on methotrexate for over a year which also seems to not be working........
Read more here
Members Treatments, Questions and comments . click on the links and see if you can help.
AlexG wrote Hi there,
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.
Read more Here OneBigItch wrote Goodbye Fumaderm Hello Skilarence
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.
Read more here Freds cosentyx journey update
Had my dermatology appointment today.
All has gone well, and we are sticking to the recommended regime once every 4 weeks and have an appointment for September.
She put in her notes again that the psoriatic arthritis was still in remission, and the psoriasis was slight and could be managed with occasional use of Diprosone.
Psoriasis Score: 4 but it's only flat and no flakes.
Psoriatic arthritis Score: 1 I leave it at one even though she said it was in remission as I do sometimes wake up with my shoulders a bit stiff, but it wears off very quickly once I get moving. Read more here AlexG wrote Cosentyx maybe the maintenance dose is too low
Hi, i thought it was worth a quick update, as I have learnt a lot from reading other peoples experience on the site.
After 9 months on Otzela and finding it not having much effect I was prescribed Cosentyx. In the uK this is provided by a company called Healthcare At Home, who send a nurse out to show you how to inject yourself etc.
The first month is a loading dose of one dose (2 syringes) a week. By the end of this month my hands and nails had cleared and everything else was fading. You then go onto a monthly dose. Things improved up to 12 weeks and I was almost completely clear, brilliant! However at 16 weeks I have now got one or two patches coming back on my shins.
I have concluded that it works really well but maybe the maintenance dose is too low. This is possibly because the dose is not adjusted for body mass and I am over 100kg.
Read more or add your comment here Lars53 wrote a cosentyx update Hi everyone,
Thank you so much for the warm welcome, it is great to finally find somewhere I can discuss Psoriasis with people that understand and have been through the same trials and tribulations.
The great news for me is that I have now completed week 5 of my Cosentyx and the result is amazing. I would say I am now almost 85-90% clear and feel so much better for it.
The injection pens are pretty much painless and after the second go you get completely used to whole process (which takes seconds) and minor
Read more Here Kat has updated her journey here
Things are a bit worse now but my Stelara injection for February didn't happen since we've decided to switch to Cosentyx. I had a dermatologist appointment last week and once they get the necessary bloodwork, it shouldn't be long before I start Cosentyx. I'll start a new thread and attempt to post pictures as I go along.
Read more Here Fialstar writes Methotrexarte please help I have a question....
I have done numerous searches online but can't seem to find an answer....
I have been on oral mtx for over a year, and I am finding that my finger joints are becoming inflamed and distorted (mostly over the past 6 months or so.) I am also beginning to get skin plaques again after being completely clear for over 10 years.
How long is long enough to know for sure that the dose/medication is not working?
I have an appt with my new rheumy coming up, and I want to get off mtx due to side effects and my belief it isn't working for me but my gp, dermy and rheumy keep urging me to stay on it. Why, when I am obviously haging issues?
So far, I have found online sites saying 3 months, 6 months, one year and 3 years are all acceptable time frames.
Very confusing!
Read more Here
Psoriasis News and other related items .
Ilumya gets FDA approval
Sun Pharma today announced that the U.S. Food and Drug Administration (FDA) has approved ILUMYA (tildrakizumab-asmn) for the treatment of adults with moderate-to-severe plaque psoriasis who are candidates for systemic therapy or phototherapy.
ILUMYA selectively binds to the p19 subunit of IL-23 and inhibits its interaction with the IL-23 receptor leading to inhibition of the release of pro innflammatory cytokines and chemokines. ILUMYA is administered at a dose of 100 mg by subcutaneous injection every 12 weeks, after the completion of initial doses at weeks 0 and 4. ILUMYA is contraindicated in patients with a previous serious hypersensitivity reaction to tildrakizumab or to any of the excipients.
. Read full article Here BI 655130 significantly improved symptoms of generalised pustular psoriasis
New data from a Phase I clinical trial showed BI 655130, a first-in-class investigational treatment, significantly improved symptoms of generalised pustular psoriasis (GPP), a rare form of psoriasis.
BI 655130 is a monoclonal antibody that blocks the action of the interleukin-36 receptor (IL-36R), a signalling pathway within the immune system that may play a role in many inflammatory diseases.
The newly published clinical data, indicate that BI 655130 rapidly improved symptoms in seven patients with GPP, who were experiencing acute moderate or severe disease flares. Five of seven patients in the 20-week, Phase I clinical trial achieved clear or almost clear skin within the first week, following a single dose of treatment, and all patients achieved this outcome after four weeks. The average improvement in patients’ skin symptoms was close to 80 per cent at week four and was maintained until the end of the study (week 20).
“The tailored targeting of the IL-36 pathway is one of the most exciting new areas in dermatology research, and progress in this mechanism has been eagerly anticipated by the scientific community,” commented the trial’s principal investigator, Professor Hervé Bachelez, Hôpital Saint-Louis, Paris, France. “This trial provides long-awaited clinical data that demonstrates the positive effect of blocking IL-36 action as a potential, novel treatment approach. The rapid improvement seen in patients from just a single dose of BI 655130 show strong potential for the future treatment of GPP.”
. Read More Here Pruritis should be evaluated during psoriasis consultations
Background to the study
Psoriasis (Ps) is a chronic systemic autoimmune disease associated with pruritus in 64‐98% of patients. However, few modestly sized studies assess factors associated with psoriatic pruritus.
The objective: To investigate factors associated with Ps pruritus intensity.
Psoriasis patients 18 years or older seen in one of 155 centers in Italy between September 2005 and 2009 were identified from the Italian PsoCare registry. Patients without cutaneous psoriasis and those with missed information on pruritus were excluded.
. Read full article Here Cosentyx gives rapid results in China
Novartis announced today new data in 441 Chinese patients with moderate to severe plaque psoriasis from a Phase III study investigating the efficacy and safety of Cosentyx (secukinumab). The data, part of a broader ongoing 52 week Phase III study in 543 patients, show 97.7% of patients treated with Cosentyx 300mg achieved PASI 75 and 80.9% achieved PASI 90 by week 12, with 87% of patients reaching PASI 90 by week 16. In patients treated with Cosentyx 150mg, 87.8% achieved PASI 75 and 66.4% achieved PASI 90 at week 12.
"Cosentyx continues to deliver what psoriasis patients need - reimagining care to provide clear skin and a complete treatment," said Eric Hughes, Global Development Unit Head, Immunology, Hepatology and Dermatology, and China Region Development Head. "We're excited to report for the first time data for a Chinese population, and to see strong support from the data for Cosentyx."
. Read full article Here Bimekizumab BEABLE2 extension study
UCB, a global biopharmaceutical company, presented positive data from the Phase 2b BE ABLE extension study of bimekizumab in patients with moderate-to-severe chronic plaque psoriasis, which showed nearly all BE ABLE 1 responders completing 60 weeks of bimekizumab treatment maintained complete or almost complete skin clearance. The results are the longest-term data so far investigating bimekizumab and further highlight the potential value of the molecule’s unique dual mechanism of action, which potently and selectively neutralizes IL-17F in addition to IL-17A, two key cytokines driving inflammatory processes.
“The long-term results observed in the BE ABLE 2 Phase 2b study suggest the meaningful difference that IL-17F inhibition, along with IL-17A inhibition, can make for psoriasis patients who need significant, long-term skin clearance,” said Andrew Blauvelt, MD, MBA, an investigator in the trial and President of Oregon Medical Research Center in Portland, Oregon. “The results add to a growing body of evidence supporting the molecule’s unique dual neutralization of both IL-17A and IL-17F cytokines across multiple inflammatory diseases, suggesting exciting potential.”
. Read more Here Ilumya shows sustained skin clearance Quote:
Sun Pharma announced that one of its wholly owned subsidiaries presented new ILUMYA TM (tildrakizumab-asmn) clinical insights at the 2019 American Academy of Dermatology (AAD) Annual Meeting, including long-term data showing sustained skin clearance in some patients living with moderate-to-severe plaque psoriasis after three years of ongoing treatment with ILUMYA TM.
These findings from the Phase 3 reSURFACE 1 and reSURFACE 2 studies showed sustained response by some patients over time and ILUMYA TM was well tolerated with low rates of adverse events. After up to 5 years of treatment, all prespecified adverse events were reported at rates <1.6 and <1.3 events per 100 patient-years in reSURFACE 1 and reSURFACE 2, respectively. Of the adverse events of interest, severe infections (1.2 and 1.5 events per 100 patient-years, respectively) and malignancies (1.2 and 0.5 events per 100 patient-years, respectively) were the most frequently reported. 1,2
. Read full article Here Skyrizi gets positive opinion from CHMP The European Medicines Agency's (EMA) Committee for Medicinal Products for Human Use (CHMP) adopted a positive opinion for Skyrizi (risankizumab), an interleukin-23 (IL-23) inhibitor, for the treatment of moderate to severe plaque psoriasis in adult patients who are candidates for systemic therapy.
Quote:<
AbbVie a research-based global biopharmaceutical company, today announced that the European Medicines Agency's (EMA) Committee for Medicinal Products for Human Use (CHMP) adopted a positive opinion for SKYRIZI™ (risankizumab), an investigational interleukin-23 (IL-23) inhibitor, for the treatment of moderate to severe plaque psoriasis in adult patients who are candidates for systemic therapy.
The CHMP positive opinion is supported by data from the global Phase 3 psoriasis program evaluating more than 2,000 patients with moderate to severe plaque psoriasis across four pivotal Phase 3 studies.1-3 Across all four studies, ultIMMA-1, ultIMMa-2, IMMhance and IMMvent, all co-primary and ranked secondary endpoints were met, achieving a significantly higher response of clear or almost clear skin (Static Physicians Global Assessment [sPGA] 0/1 and Psoriasis Area and Severity Index [PASI] 90) compared to ustekinumab, adalimumab and placebo at week 16 and up to week 52 (depending on study design). The most frequently reported adverse reactions were upper respiratory infections, which occurred in 13 percent of patients.5 Most reported adverse reactions were mild or moderate in severity.
. Read full article Here DUR-928 for psoriasis enters phase 2a proof of concept trial Another new treatment in the pipeline
DURECT Corporation today announced it has commenced patient dosing in a Phase 2a proof-of-concept trial with topical DUR-928 in patients with mild to moderate plaque psoriasis. DUR-928, the lead investigational product in the Company's Epigenetic Regulator Program, is an endogenous, first-in-class small molecule, which may have broad applicability in chronic hepatic diseases such as nonalcoholic steatohepatitis (NASH), acute organ injuries such as alcoholic hepatitis (AH) and acute kidney injury (AKI), and in inflammatory skin disorders such as psoriasis and atopic dermatitis.
"As topical agents continue to be the mainstay of treatment for patients suffering from mild to moderate plaque psoriasis, especially localized plaque psoriasis, it is important to investigate a topical agent with a novel mechanism of action," stated Dr. Howard Maibach, Professor of Dermatology at the University of California San Francisco. "Should the results be positive, DUR-928 should be studied in additional inflammatory skin diseases."
"Commencing patient dosing in this proof-of-concept psoriasis trial is an important milestone in line with our focus for DUR-928 in 2019, which is to produce data with the potential to create significant commercial and partnering value," said James E. Brown, President and CEO of DURECT.
. Read more Here Trial of microarray patches for treatment of psoriasis started
Lohmann Therapie-Systeme AG (LTS), a market leader in transdermal therapeutic systems, and LEO Pharma A/S, a global leader in dermatology, today announced that the companies will start the clinical trial of microarray patches for the local intradermal treatment of psoriasis. The study will start in April 2019 with expected completion later this year and the aim of the study is to document safety and efficacy in patients.
A microarray patch (also known as a microneedle patch) is a polymeric, microscopic array which delivers encapsulated drugs by perforating the outer stratum corneum with numerous microneedles. The needles are biodegradable and will dissolve as they release the drug in the skin.
This is the first time that microarray patch technology is applied to psoriasis treatment, representing a novel dosage form with several potential benefits for patients: The microarray patch enables slow release of the drug (betamethasone and calcipotriol), which means that treatment frequency can potentially be reduced from one or more times daily to once weekly. Furthermore the patch may reduce or potentially eliminate the need for application of topicals such as ointments. Application of the patch is precise due to the small size of the micro needles ensuring that only affected skin is treated.
. Read full article Here Biological treatments in children with psoriasis study
Background:
Three biotherapies – etanercept, adalimumab, and ustekinumab – are licensed in childhood psoriasis. The few data available on their efficacy and tolerance are mainly derived from industry trials. However, biological drug survival impacts long‐term performance in real‐life settings.
Objective:
The objective of this study was to evaluate the survival rates of biological therapies in children with psoriasis in real‐life conditions. Secondary objectives were to evaluate the factors associated with the choice of the biological therapy and to report severe adverse events.
Materials and methods:
This study was an observational retrospective study. Data were extracted from the clinical records of 134 children. Kaplan–Meier estimates were used to analyse drug survival overall and in subgroups of plaque psoriasis, bio‐naïve, and non‐naïve patients.
click Here
Want More
A lot of members only threads and journals have been updated, come and see if there are more replies on your thread ... why not log-in and have a quick look around.
Off Topic Board. Members Photo's The Ask Threads.
*There are other members only boards. But as it depends on how many posts you have made and what group you are in I won't add them here. The only way to see them is to make more posts.
Fred's Music Column.
Strange Fruit: If it wasn't for Billie Holiday we probably wouldn't have known about this protest poem about American racism. The poem was written by Abel Meeropol and is an anti-lynching poem from 1937. It tells a story right from the start that is not easy to forget, it is hard hitting and when you listen closely it will make you shiver once you get what it is about.
Imagine being taken away from your family just because your skin colour fits the bill and they have not been able to find the perpetrator of a crime. You fit the bill as far as the White people are concerned and there is no jury or judge, you are Black so that is good enough. You didn't commit the crime, but the colour of your skin says you did so you are lynched. (Thankfully that no longer happens today)
It is an excellent song and comes across more not only because it has the beautiful voice of Billie Holiday, but also because it is a Black performer. The song has been covered by Nina Simone, Jeff Buckley, Siouxsie and the Banshees and UB40 to name a few. But go and find yourself an original of Strange Fruit by Billie Holiday it's one of those songs that everyone should listen to at least once in their life.
Quiz Time: The quicker you get it the more points you get. What am I ?
For 5 points: A Black Cab Session with Bonnie Prince Billy has some.
For 4 points: An American bubblegum pop band of the 1960s is one.
For 3 points: There was a classic song in the film Beetlejuice at the dinner scene that had one.
For 2 points: George Harrison wrote a tribute to the die-hard Beatles fans.
For 1 point: Have you noticed a theme in my column this month?.
Yep it's fruit. 5 points: Coconuts by Bonnie Prince Billy (That nurse does like her Fruit doesn't she ?) 4 Points: The 1910 Fruitgum Company (Dare to admit you liked them ?) 3 Points: Day-O (The Banana Boat Song) by Harry Belafonte (Go and search for Beetlejuice - Day-o) 2 points: Apple Scruffs was on "All Things Must Pass" (I have a very special edition but that's another story) 1 point: Yes it all about Fruit. (You should pay more attention)
Members recommendations: Each month I ask our members to come up with a music recommendation on a theme.
This month it's "Fruit"
Raxyl suggested: Orange Crush -by R.E.M Mrs Fred suggested: Lemon Tree by the Move Caroline suggested: Eve and the Apple by Shocking Blue Turnedlight suggested: Blackberry Way by The Move Grizzly Bear suggested: Oranges And Lemons by Tim Hart and Friends wooleyb suggested: Raspberry Beret by Prince D Foster suggested: Tutti Frutti by Little Richard jiml suggested: Tangerine by Led Zeppelin JohnB suggested: Cherry by Lana Del Rey Kat suggested: Strawberry Wine by Deana Carter Fred suggested: Banana Mango by Joe Satriani
I have a thread in the Members Only boards and you are welcome to pop along and give some feedback or suggestions. Find It Here Enjoy your music, and don't forget to tune in next month.
Recipe Spot
Chicken Cordon Bleu
Well spring is sprunging and thought are turning to fresh, light food so I’m going the other way slightly. This dish is really, really tasty and super quick to make so much so it can be made for your evening meal after a hard day at work (well I can dream about the hard work bit).
Chicken Cordon Bleu in a hurry (yep, pretentious or what!)
So grab a chicken breast per person and carefully make an incision half the thickness of the breast to almost cut through (or if you knives are bluntish like mine hack at it to achieve the same result). Open the breast out and place between two sheets of cling film. Now this is where you can take out the days stress on your evening meal. Give it a ‘Reet good pastin’ with a rolling pin or meat mallet to persuade it to a thickness of around 5mm. Don’t go all psycho on it though and put holes in it.
Take off the upper cling film sheet and lay across a couple of slices of ham over the chicken. We use a Bavarian style smoke ham. Whatever you use it doesn’t want to be thin. Parma ham would be nice but it can be very fatty and is generally a bit too thin. Take a slice of Emmental cheese (the prepack square slices are ideal) cut in half and lay each on a side of the breast. Fold over and season each side with a grind of black pepper and salt.
Put 50p in’t meter and wind the oven up to 200°C / 390°F / Gas 6.
Drizzle a little oil into a hot frying pan and gently place your breasts (chicken that is) cooking over a medium heat for three to four minutes a side to brown off. Lightly oil a baking tray, transfer your breast to the tray and throw in the oven for around 6 minutes or so.
This is best served with some nice New Potatoes liberally slathered in butter, steamed tender stem Broccoli or roasted Asparagus work well as would a simple green salad (rabbit food).
To accompany? As it may be a school night, should you???? Of course why not? A nicely chilled Pinot Grigio would go down quite nicely with it.
.
Enjoy
Johnb
To read more recipes or to add your own
Click here
Members Photos
Members Photos
We have an active members photo section on Psoriasis Club and each month our members can choose 1 image to show on the newsletter.
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Information
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For more information about this policy
See Here!
In This Issue
Hotmail users reminder
Please note that if you use Hotmail to register for membership you may not succeed as our mail often gets blocked by Hotmail.
This problem can also effect those already registered as you may not get any notification emails that you have subscribed to.
Although we can sometimes tweak things, it is happening too often with Hotmail and from now on problems with Hotmail will take low priority as it is a problem on their side and not ours.
We recommend you get another email account for using with Psoriasis Club from another free or private email provider
The Ask Threads
Some of our members have an Ask Thread. These are threads where other members can ask the thread starter a question about themselves, it's a good way of getting to know some of our members and can also turn out some interesting traits.
Members can find the all the current Ask Threads HERE
Top Tips for newly diagnosed psoriasis sufferers
If you have recently been diagnosed with Psoriasis or even if you have suffered for years, members have been posting things they feel may help you cope, you can follow the link below to see more tips that members have posted
Number 1 Talk: Don't keep it to yourself. Share with your friends, family, colleagues and our members here.
Number 2 Read: You have Psoriasis, try to get some knowledge about your disease, it will make you a better partner for your dermatologist in order to find the best treatment for you.
To see the full list of top tips Or if you have one to share
Click Here
Sneaky peek
We have an active Off Topic Board and we thought we would share some sneaky peeks with our readers .
Caroline is kindly showing us pictures from keukenhof in The Netherlands and has posted some spectacular pictures I will tease you with just one of a hyacinth bulb field
This Cat .....
This cat
He’s disgusting
He will happily chomp
On a mouse
And leave it’s tail in his basket
Then he will do his best
To get your attention
When you are busy
Loudly miaow
When you are on the ‘phone
Try to trip you up
Not once, but every time you pass
He will squeeze his eyes
In appeasement
Or widen them
To look innocent
But later
He will jump up on your lap
Gaze into your face
Hypnotise you
Purr
Then curl up in a neat little circle
And fall deeply asleep
This cat
Is so beautiful
Author Turnedlight
Sunflower Competition 2019
It's good to see some members have planted seeds already to get their sunflowers under way
Although there's no rush to get involved start planting anytime ....there are no rules
Anything you grow and can show will be acceptable and like last year everyone that took part was a winner in one of the categories ,
So add comments and pictures on this thread please
Sunflower Competition Here
THOUGHT OF THE DAY
Light thinks it travels faster than anything but it is wrong.
No matter how fast light travels, it finds the darkness has always got there first, and is waiting for it.
Each month I will add a tip or a link to assist you using the forum .
Adding images to your posts
If you want to add an image to your post click the "Insert Image" button 9th from the right in the new post/thread window it's next to the smily. A small window will pop up where you can add the URL address of the image.
To use your own image from your computer you need to have it hosted. there are many free image hosting sites and a Google Search will find you some. although the one most members use as it seems very reliable is imgur .
Go to the link and follow the instructions in the tutorial........See here
Should you get stuck or need help just ask a member of the forum team who are always pleased to offer assistance
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No Spam.
Just a small bunch of friendly people with psoriasis sharing information and support.
Strange Fruit: If it wasn't for Billie Holiday we probably wouldn't have known about this protest poem about American racism. The poem was written by Abel Meeropol and is an anti-lynching poem from 1937. It tells a story right from the start that is not easy to forget, it is hard hitting and when you listen closely it will make you shiver once you get what it is about.
