Psoriasis Club Newsletter

February 2020

Welcome to your February newsletter, As we get closer to spring here in the northern hemispher, I trust that you are managing your psoriasis well.

I would like to thank those of you who participated in the end of year newsletter survey it showed that generally you were happy with the content and one of the questions asked was "would you like a regular or one off piece in the newsletter " and a few of you said you would ....Now I'm not promising anything but do get in touch and let myself or Fred know what you had in mind and we can try to put something together... we have no way of knowing who was interested as it was an anonymous survey .... so do get in touch

Sadly we are still not being seen in some search engines, but a few more found their way here and membership is still looking healthy , if you can think of a way to promote the club we would be pleased to hear your ideas

If you have a thread about your experiences what better time to come in and update your thread or if you don't have one and would like to start a thread about your treatment you can do that Here .

The off topic has been as busy as ever as we now have a games and quiz board where many of the existing games have been moved to and a few new ones added why not pop in and have a look Games and Quizzes Here

If you're a guest feel free to browse through the links here and join if you want to see more. Some off topic items may not be available for guests but all the health boards are
The forum team have been busy keeping an eye on the Club and are there for you, so if you can't find something you are looking for or if you aren't sure how to do something, we are here to help just click the link below to make contact

I'm always looking for ideas to improve the newsletter if you have a suggestion contact me or if you prefer any of the staff you will notice if you are a member that Fred is doing a survey, more about that later in the newsletter HERE

If you are currently a subscriber to the newsletter you will receive notification with a link at the beginning of each month. If you don't currently recieve one and would like to receive an email when a new newsletter is made click HERE

Note: Subscribed members get an early view of the newsletter.

This months stats

New Introductions

Please look at these introductions and come and welcome the new members that have taken the trouble to write an introduction.

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Mcduffy wrote her intro

So just recently got the diagnosis- 66 years old newly retired Registered Nurse now with flaking scalp & some inverse psoriasis- now my toenails are showing some major issues- had my thyroid removed for cancer about 5 years ago- endocrinologist super conservative- advised me not to take Biotin & limit my intake of Vit D- says it binds to the Synthroid & is crazy about increasing my dose- I can't lose weight and am feel so down - Dermatologist wanted to start me on Taltz but now being on Medicare I have a part D (pharmacy) plan that is not great with coverage- will cost me over $3,000.00 out of pocket- too expensive & don't qualify for the patient assistance program- wanted to see if anyone has had good results from dietary restrictions and supplements

.... Read more here

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EugeneHockey wrote.... Hello PC people

Hey friends, just signed up for the club. Not the happiest thing I've ever done, but it seems there is so much support and knowledge on this site. I've had P for about a year now. Steadily getting worse and worse. It is causing a good amount of stress in addition to the normal everyday stress of studying wars, climate change, ecological collapse, mass extinction, ect... Can'twait to get to know yall more and hopefully I'll be a positive addition to the community. Stay frosty my friends! .... Read more here

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Members Treatments, Questions and comments

Jiml wrote . Fumaderm v Skilarence

Hi I'm curious to hear if anyone else has had the same experience as I have

I was on Fumaderm tablets through the UK national health service ....this was a drug that was not approved by NICE and was prescribed by dermatology departments at their discretion.
I was on Fumaderm for over six years with never a sign of the psoriasis emerging apart from a very small patch (to remind me to take the tablets )

However around six months ago the dermatologist switched me to Skilarence which was not a worry to me as it was basically the same drug. However since transfering I have noticed the psoriasis slowly returning to my scalp to the extent that I now use a topical to reduce the scales when I need a haircut . Read more here

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Fred asks

Probably not going to get many if any answers, but has anyone tried both Taltz and Cosentyx ?

We have a lot of threads on both, but I'm interested in those that have tried both. Also preferable those that have psoriatic arthritis.

I'm thinking of going for the switch from Cosentyx to Taltz so on the off chance I thought why not ask here first.
Anyone used both ?

If you have please reply here

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EugeneHockey asks Should I start cosentyx

Got approved for Cosentyx through my insurance and they have a program where it sounds like I won't have to pay anything... almost unbelievable in the corporate ruled ruthless capitalist USA. I'm sure the time will come when I need to pay for some lawyers second vacation home... but really, anyone have any advice? Tried the creams and salt baths, messed around with the diet but nothing seems to help much. Had some luck with laying out in the sun a lot during the Summer but where I live it rains half the year. What should I do friends? read more here

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Psoriasis News and other related items

More unbiased studies needed to improve psoriasis diagnosis

This abstract concludes: We need more un‐biased and well‐designed studies to improve our diagnostic procedure in inflammatory skin diseases. In the future, diagnostic decision‐making will most likely be guided by artificial intelligence‐driven image analysis as well as by molecular diagnostics.

Abstract:
Therapeutic developments have profoundly changed our understanding of the pathogenesis of inflammatory skin diseases, and with it our treatment aims. In particular, the newest generation of biologics in psoriasis, namely antibodies targeting either the IL‐17 or the IL‐23 signalling cascade, comes with a good chance to relieve the patient completely from disease symptoms. However, diagnostic tools have not been co‐developed with these therapeutic options, and our disease classification is partially old‐fashioned and cuts off numerous patients from access to these new therapeutic options. Furthermore, it is currently impossible to predict which patients benefit from a given therapy as well as to stratify patients according to their risk to develop aggravating disease and/or comorbidity.

These facts demand progress in the field of inflammatory skin diseases. First, a modern classification of inflammatory skin diseases that is based on molecular events and with it immune response patterns is needed and second, objective biomarkers that improve our diagnostic power have to be identified. Such biomarkers can improve diagnostics, mirror disease severity,4 stratify patients according to the risk of aggravating disease course or developing comorbidities or predict therapeutic response. Numerous efforts are currently undertaken to assess the quantity of target biomarkers in serum or skin. In parallel, the potential of specific genotypes to stratify patients is investigated. Read more here

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This study suggests Taltz (Ixekizumab) may help to improve the well-being of patients with genital psoriasis (GenPs)

Background:
Epithelial surface disruption in genital psoriatic lesions may manifest as erosions, fissures and/or ulcers, causing pain and significantly impacting a patient’s sexual health.

Objective:
To evaluate the impact of erosions, fissures and/or ulcers in genital psoriatic lesions on pain and sexual activity in patients with moderate‐to‐severe genital psoriasis (GenPs) and treatment responses to ixekizumab versus placebo until Week 12.

This post‐hoc subgroup analysis of patients presenting with and without erosions, fissures and/or ulcers in genital lesions from a phase IIIb multicentre, randomised, double‐blind, placebo‐controlled study (IXORA‐Q; NCT02718898) in 149 adults with moderate‐to‐severe GenPs treated with subcutaneous ixekizumab (80 mg every 2 weeks; n = 75) or placebo (n = 74) evaluated outcomes for clinician‐rated GenPs severity (static Physician’s Global Assessment of Genitalia; sPGA‐G) and patient‐reported genital pain and itch (Genital Psoriasis Symptoms Scale; GPSS) and sexual health (Genital Psoriasis Sexual Frequency Questionnaire; GenPs‐SFQ). Read more of the study here

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This study evaluated the effects of patient demographic and disease characteristics on Ilumya / Ilumetri (tildrakizumab) efficacy using phase 2b/3 trial data.

Background:
Tildrakizumab is a high‐affinity, anti–interleukin‐23p19 monoclonal antibody approved for treatment of moderate to severe plaque psoriasis.

The Objectives:
To evaluate the effects of patient demographic and disease characteristics on tildrakizumab efficacy using phase 2b/3 trial data.

Data from patients who received placebo, or tildrakizumab 100 or 200 mg, in P05495 [NCT01225731], reSURFACE 1 [NCT01722331] and reSURFACE 2 [NCT01729754] were analysed. Patient subgroups were defined by age, sex, race, weight, self‐reported psoriatic arthritis, failure of ≥1 traditional systemic treatment, and prior biologic use. Percentage of Psoriasis Area and Severity Index (PASI) 75 and 90 responders at Week 12 were compared across treatment arms in each subgroup. Absolute PASI at Weeks 0 and 12 were also determined for each subgroup. Read more here

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Photoadaption to UVB in psoriasis patients study

Background:
In the biologic era, Narrow Band Ultraviolet B (NB UVB) phototherapy still remains a valuable, effective, inexpensive, safe anti‐psoriatic treatment Patients can lose response to NBUVB over time due to photoadaptation.This phenomenon is the tendency of the skin to respond to ultraviolet (UV) exposure by undergoing changes that may result in a decreased future response to an equivalent dose of radiation, thus leading to the need for an increased exposure during phototherapy course.

The Aim:
To characterize and quantify the determinants of photoadaptation in NB UVB treated psoriatic patients.

Methods:
We enrolled 57 adult patients with moderate plaque psoriasis. Patients underwent 24 sessions of NB UVB phototherapy delivered thrice a week. Dosing was started with 70% of the Minimal Erythema Dose (MED) with percentage based dose increments every two treatments. MED as well as change in the erythema and Melanin Index (MI) were measured at baseline and at the end of phototherapy course. Moreover, an Adaptation Factor (AF) was calculated for each patient. .

Read the results here

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Could plasma derived EV microRNAs serve as biomarkers for psoriatic arthritis

This survey explored whether plasma derived EV microRNAs could serve as biomarkers for psoriatic arthritis.

Background:
Psoriatic arthritis (PsA) develops in ~30% of patients with psoriasis. The diagnosis of PsA is challenging and there are no reliable molecular markers in clinical use. MicroRNAs are short noncoding regulatory RNAs, which can be actively packaged into extracellular vesicles (EVs) and secreted to the circulation.

Objectives:
To explore whether plasma‐derived EV microRNAs may serve as biomarkers for PsA in patients with psoriasis..

Read more here

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Methotrexate for psoriasis and cutaneous melanoma study

This study suggests the use of Methotrexate for psoriasis was not associated with an enhanced risk for cutaneous malignant melanoma (CMM)

Background:
Cutaneous malignant melanoma (CMM) is a highly immunogenic tumor. Patients with an impaired immune system have an enhanced risk for CMM and a worse prognosis. Methotrexate (MTX) is an anti‐inflammatory and immunosuppressive drug frequently used for treating patients with psoriasis. An association between MTX and risk of CMM has previously been demonstrated in patients with rheumatoid arthritis. Read more here

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Stelara gets EC approval for age 6+ psoriasis patients

Janssen Pharmaceutical today announced that the European Commission (EC) has approved the expanded use of STELARA® (ustekinumab) for the treatment of paediatric patients (ages 6–11) with moderate to severe plaque psoriasis. Ustekinumab was previously approved for use in adolescent and adult patients with plaque psoriasis, aged 12 years and older, and is now the first available biologic treatment in this patient population to selectively address the IL‑23/IL‑12 pathway, an important therapeutic target for the condition.

In one third of the 14 million cases in Europe, psoriasis begins in childhood. Psoriasis is an immune-mediated inflammatory disease that affects the skin, resulting in areas of red or inflamed skin covered with silvery scales, which are known as plaques. The condition can have a profound, long-term impact on the psychological health and overall quality of life for children. The development of paediatric psoriasis is also associated with high incidence of low self-esteem, and it can have long-term ramifications into adulthood and beyond.

“This latest EC approval is a significant milestone for young children struggling to cope with the symptoms of psoriasis,” said Lloyd Miller, Vice President, Immunodermatology Disease Area Leader, Janssen Research & Development, LLC. “We’re delighted that this therapy, which has a well-established safety and efficacy profile in adults with plaque psoriasis and other immune diseases, is now expanded to children as young as six who are living with this chronic disease.” Read more here

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Want more?

Q and A's with a member

Each month we choose one of our members at random to answer 10 questions, this month it was Beverley

Q1: What is your favourite saying ?

A1: You can’t change your past, but you can change how you let it affect your future.

Q2: Which is best and why ? Films / Books / Music.

A2: I love to read books. My favourite being crime. I’m a big James Patterson fan. I also like reading true crime books. I also like reading true Holocaust stories. The lastest which I read was The boy who followed his father into Auschwitz. I’ve also read several books written by people who were abused during childhood. I think that maybe this is due to my own childhood and it makes you realize you are not alone and there are thousands out there just like you. I could go on forever about why I read books. With films or music I am too easily distracted.

Q3: What's top of your bucket list ?

A3: I would love to do a tandem paragliding. Hopefully I will get a chance towards the end of this year if things go to plan.

Q4: Got any bad habits ?

A4: I have a really bad habit of picking any scabs I have. (Disgusting I know) I just can’t seem to leave them alone.

Q5: Do you collect anything ?

A5: Don’t really collect anything as such anymore. I do have a large assortment of recipe books. That’s without all the recipes I have collected online. I love cooking and trying recipes out from all over the world.

Q6: Your biggest achievement was.

A6: Letting go of my past.

Q7: How far away from your birthplace do you live ?

A7: I was born in Newark, Nottinghamshire and Now live in Tilburg in The Netherlands. Not sure how far away that is.

Q8: What did you last laugh at ?

A8: Hubby getting a beer shower last night (New Years Eve) Son was giving him a glass of beer while he was sitting and son was standing. Hubby was playing silly beggars with granddaughter waving his arms about and being blind in one eye didn’t see son stood over him. Hence he knocked the glass. While writing this, I am laughing all over again.

Q9: Do you believe in aliens ?

A9: I have come across some people in my time who act like they are from another planet. However, I do find it hard to believe that there is nothing else out there in space. Just don’t think we are ready to discover it yet.

Q10: First thing you would do with 1 million of your own currency ?

A10: I would go away with hubby (nowhere exotic) just a quiet holiday park a few miles away where we frequently go. Then we would be able to have timeout to think about how we are going to share our luck with the kids, but still be able to have a comfortable life until we pop our clogs.

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Who will it be next month ? Nominations on a postcard.

Fred's Music Column

Survey: I'm looking for a little feedback about my music column. Though I do often get some comments, it's difficult to know if and how popular it is. So I thought why not give you (my readers) the chance to give me something to work on for my future columns.

Obviesly my column is never going to please you all as there are some genres or artists I just don't like. There is no point in me writing about opera for example, but even though I'm not a big fan I may be interested in some country artists. Music is so diverse and some country is fine, but opera will never do it for me.

But please have a look at my survey as it may help me in the future. I'm keeping my column going whatver you all say as I enjoy doing it, but at the end of the day I would rather tailor it to what you (my readers) enjoy too.
You can find the survey Here
Thank you.

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Quiz Time: Where were they born. 1 point for each one you get right.

Q1: Bob Marley
Q2: Ravi Shankar
Q3: Celine Dion
Q4: Cliff Richard
Q5: Björk
Q6: Val Doonican
Q7: Rihanna
Q8: Ali Farka Toure
Q9: Carlos Santana
Q10: Andre Rieu

Answers
A1: Nine Mile, Saint Ann Parish, Jamaica.
A2: Benares, Uttar Pradesh, India.
A3: Charlemagne, Quebec, Canada.
A4: Lucknow, Uttar Pradesh, India.
A5: Reykjavík, Iceland.
A6: Waterford, Ireland. (Bet Jim got that one right)
A7: Saint Michael, Barbados.
A8: Kanau, Gourma-Rharous Cercle, Tombouctou, Mali .
A9: Autlán de Navarro, Jalisco, Mexico.
A10: Maastricht, Limburg, Netherlands .

So how many points did you get ?

1. Why are you reading a music column.
2. Was it really that hard ?
3. Not bad but you must brush up on your music.
4. One more and you would be in the 50%s.
5. I'm impressed 50% is good.
6. Now you're cooking.
7. Well done I doubt many will beat that.
8. I take my hat off to you, I only got 6 and I knew the answers.
9. Was that luck or web searching ?
10. You really do need to get out more. Or get in touch and I'll let you do the next one.

Show Answers

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Members recommendations: Each month I ask our members to come up with a music recommendation on a theme. This month it's Romance (including Love, Passion, Affection, Etc

Raxyl suggested: Waiting by V Spy V Spy
D Foster suggested: Turn Your Love Around by George Benson
KatT suggested: A Thousand Years by Christina Perri
jiml suggested: Love And Affection by Joan Armatrading
Caroline suggested: You by Judith Jobse
JohnB suggested: Another Suitcase In Another Hall by Barbara Dickson (Evita)
wooleyb suggested: Bad Romance by Lady Gaga
Mrs Fred suggested: Martha by Tom Waites
Fred suggested: Summer Romance by The Rolling Stones

Listen on: Deezer | Spotify

Show Recommendations

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*Watch out for my new thread each month where I ask for your recommendations. I also 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.

Johnb's Recipe Spot

Sausage and Cabbage Pappardelle

So what for February? Decisions decisions . . . . .

Oh I know! Lets try a nice filling pasta dish. I think this one will fit the bill nicely and as quite a few we do this one is a quick simple dish.

To start grab a pack or half a dozen of your favorite sausages. A good herby Italian pork or chicken sausage is called for but something with a bit of a kick like a Cumberland or Lincoln would work just as well. [Rant mode On]Sorry guys but I think veggie sausage might not work . . . . . . no come to think of it I don't believe these anathemas to food should be described as, or look like a sausage – why try to make something look and feel like something is clearly not. Its fraud. Make it look like something else. A sausage should contain meat.
[Rant mode Off].

To cook start by skinning your sausage into a large hot frying pan in a little oil, breaking it up into lumps around 10mm dia or so until nice and brown. Transfer the cooked sausage to a warm bowl. Add a little more oil to the pan and throw in around 300g of Savoy cabbage (a firm dark green curly cabbage) with a sliced onion for about 4 minutes then add 250ml of chicken stock (a stock cube is fine). Let it glop away on a medium heat until the cabbage is tender. In the meanwhilst, cook up your pasta. Now we used tagliatelle but it should really use Pappardelle to give a nice authentic rustic feel to it. Now if like us your supermarkets or food outlets are less than imaginative with their choices of pasta then you can easily cobble up some pappardelle by cutting Fresh Lasagna sheets (I hope I don't need to explain why it needs to be fresh!) boil it until tender.

By now the cabbage will be ready so quickly fold in the sausage you have been keeping warm and remove the pasta from the pasta pan into the frying pan. Always add the pasta to the ‘sauce’ don't bother draining off the pasta, that drop of cooking liquid helps bring the dish together. Fold it all together and serve sprinkled with a little chopped flat leaf parsley and a good grating of Parmesan or Pecorino Romano.

To serve; Its almost a no brainer for me, a Valpolicella chilled just a touch or if you must a Pinot Grigio Saluti!

To read more recipes or add your own Click here

Psoriasis Clubs 10th anniversary Questions and answers

In May this year we will be celebrating Psoriasis Club's 10th birthday.

As many of you know if you read the newsletter Fred has a Q and A session with a member each month (see above )

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Anyway this May we will be celebrating Psoriasis Club's 10th birthday so thought we could have Q and A's about Psoriasis Club for the May edition.

So If you have any question you would like to know about psoriasis club ( i.e. How's it funded) just ask on the link below and Fred will choose 10 to answer for the May newsletter and the rest will be answered in this thread. Over to you

Members Photos

Im always pleased when members submit photos for use in the newsletter and each month our members can choose 1 image to show on the newsletter and I'm always pleased to add them

Information

Please remember no posts and no log-in for 12 months, your account will be deleted. For more information about this policy See Here!