Psoriasis Club Newsletter

June 2020

Welcome to your June newsletter.

I hope you are keeping well and have avoided the terrible pandemic that has swept across the world, and although many governments are easing restrictions, the virus is still there. So we must stay vigilant. I know that being stuck inside for the last 10 weeks has been mind numbing for me, but I hope you have coped well yourself and managed to stay active, did you keep taking your psoriasis medication or did you stop. It would be interesting to hear how you are coping feel free to air you views here on our Covid-19 thread Covid-19 aka corona virus and psoriasis

Browse through the newsletter there are some interesting threads been started and introductions. Why not pop in while most of us are less busy and say hi. Or answer one of the members questions. Forums thrive on interaction and needs member input to stay relevant

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 contact any of the helpers 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 and updates

Kat_p writes about diagnosis of psoriasis after strep infection

Hi I'm new here, just got what turned out to be guttate after a bad strep infection in March. What started out as brown discoloration on my legs turned into tiny red dots all over my legs. I didn't pay much attention until it showed up on my chest. That's when i went to a dermatologist and got a biopsy. My doctor put me on betamethasone, however it doesn't seem to have lasting effect. I started out with tiny dots, now after 3 rounds of topical steroid, it spreads to other areas of my body. It does seem to reduce the inflammation and redness during my 2 weeks treatment, however as soon as i stop, the spots come back with a vengeance. Some spots even joined together and formed a 1inch leisons Click here to read more

To read more or to start or update your own ........... Click here

Members Treatments, Questions and comments

Fred has a question about Tremfya and eye sunlight sensitivity

Has anyone else using Tremfya noticed an increase in eye light sensitivity ?

It has been said that people with psoriasis can suffer with increased light sensitivity and I remember Stelara made my eyes more sensitive to sunlight.

I'm finding now we are getting a lot more brighter sunshine my eyes start to feel more sensitive and get very dry and I keep squinting, after coming back inside it starts to wear off and after a couple of hours my eyes are back to normal. read more here

mac092 has updated his Stelara thread

Hi everyone
Now for the important update, just had my fourth dose of stelara. As before I am completely clear and the little blotchy patches on my skin(marks from where it used to be) have started to clear too. Speaking for my own experience so far, I've had absolutely no side effects. Long may this last!

The main reason I started this thread I suppose, was for anyone who failed with other treatments and we're beginning to lose hope, keep going there's more options. While skillarence failed for me, stellera has been a revelation and the needle really isn't a big deal(which is saying something as I used be terrified of needles). Ill try my best going forward to keep up to date, even if I only remember when I have to take another shot so that people can see how stelara plays out(for me) in the long term read more here

Duncan is experiencing problems with his eyes and is on Taltz

Started getting eye problems after a few weeks on Taltz.
Eyes aching like I was punched in them. It then changed to when I wore glasses to see the PC screen. (quite a lot) Its now very sunny in the Uk and I have slight head ache and eye ache. I had my last injection 18th April and was about to take it monthly. I missed my last injection, so now just over 5 weeks ago.

I am wanting it out of my system so I know if its Taltz that's causing it.
Opticians tested my eyes in January. They had another look when I started with problems. They couldn't find anything major. My eyes were very slightly dry and my distance vision had deteriorated a little.

I phoned dermatologist personal receptionist and asked if it was ok to stop temporary. Also with the Virus about. She said she had heard of someone else with the same problem.

My question is....How long before Taltz is out of my system more here

Psoriasis News and other related items

Humira V Fumaric Acid Esters (FAE) on cardiovascular disease in psoriasis

This study compared Humira (adalimumab) and Fumaric Acid Esters (FAE) on cardiovascular disease markers in psoriasis patients.

The effect of adalimumab and fumaric acid esters (FAE) on the cardiovascular risk associated with psoriasis has only been investigated scarcely in randomized controlled studies.

The aim of this prospective, randomized controlled head‐to‐head trial was to compare the influence of adalimumab and FAE on cardiovascular disease markers in psoriasis patients. Read more here

Cosentyx and Quality of life study

This study suggests Cosentyx (secukinumab) resulted in complete normalization of quality of life (QoL) in a substantial proportion of psoriasis patients, and their families, regardless of their prior treatment history.

Quote:
Psoriatic disease is associated with considerable impairment of Quality of life (QoL). The PROSE study (NCT02752776) investigated the impact of secukinumab treatment on patient‐reported outcomes (PRO) in patients with moderate‐to‐severe psoriasis stratified by their treatment history.

PROSE was a prospective, non‐randomised, multicentre study. Patients were categorized at baseline according to treatment history as naïve (naïve to any systemic therapy [N=663]), conventional systemic (previously exposed to ≥1 conventional systemic (CS) therapy [N=673]), and biologics (previously exposed to ≥1 biologic therapy [N=324]). QoL PROs, efficacy and safety of secukinumab 300 mg were assessed for a period of 52 weeks. Read more here

Cosentyx V Stelara 52 week efficacy and safety study

Results of a 52 week efficacy and safety study of Cosentyx v Stelara

Secukinumab demonstrated superior efficacy over ustekinumab in the treatment of moderate to severe plaque psoriasis over 16 weeks in the CLARITY study and over 52 weeks in the CLEAR study.

To compare the efficacy and safety of secukinumab vs ustekinumab over 52 weeks in CLARITY.

Analysis of 52‐week data from CLARITY (NCT02826603), a phase 3b study in which patients were randomized to receive secukinumab 300 mg (n = 550) or ustekinumab 45/90 mg (n = 552) per label.
Click here to see results

Usefulness and reliability of insurance databases in psoriasis studies

Why not click on the link to see the study ... Read more here

Only 1/4 patients achieved complete skin clearance after 6 months on biologics

To read more about the study ...Click here

Cimzia encouraging results in psoriasis and psoriatic arthritis patients

This study set out to confirm the effectiveness and safety of Cimzia (certolizumab) in patients with psoriasis and psoriatic arthritis in routine clinical practice.

Certolizumab, a pegylated tumour necrosis factor‐α inhibitor, reduced disease activity in randomised trials of patients with psoriasis and psoriatic arthritis. Real‐life data are missing.

To confirm the effectiveness and safety of certolizumab in patients with psoriasis and psoriatic arthritis in routine clinical practice.

In this retrospective study involving 11 Italian sites, patients with psoriasis and psoriatic arthritis received subcutaneous certolizumab (400 mg loading dose at 0, 2 and 4 weeks, followed by 200 mg every 2 weeks) for up to 52 weeks. Primary outcomes included mean change from baseline in Psoriasis Area and Severity Index (PASI) and modified Nail Psoriasis Severity Index (mNAPSI) scores, and the proportion of patients achieving a 75%, 90% or 100% reduction in PASI score. Other endpoints included Disease Activity Score computed on 44 joints correlated to the erythrocyte sedimentation rate during the first hour (DAS44‐ESR), Tender Joint Count (TJC), Swollen Joint Count (SJC), pain (visual analogue scale [VAS] score), inflammatory markers and quality of life (QOL). Read more here

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 Artemie

Q1: Do you have any pets ?

A1: Mr Artemie and me are building a smallholding and living in a mobile home untill the house is habitable. As soon as that is the case; two cats! Slutty friendly types.

Q2: What would be your last meal ?

A2: Something with: crispy salted chicken skin, cilantro/koriander and work it out from there.

Q3: Any sports interests ?

A3: Sometimes watch long distance speed skating and snooker. Under a blanket on the couch, so I can fall asleep at leisure. So good.

Q4: What did you have for breakfast today ?

A4: Coconut yoghurt with mashed strawberries

Q5: Do you collect anything ?

A5: Elastic bands. They are the best! Can be used for just about anything. The ones that go around asparagus vegetables are especially awesome.

Q6: Had an unusual or daring experience ?

A6: 12 Beaufort at sea. Twice.

Q7: Strangest Job you have ever had ?

A7: I got to decide who lived and died at…. No just kidding. I was a professional sailing captain for 8 years on historical tallships.

Q8: What is your favourite saying ?

A8: Oops

Q9: Where do you see yourself in 20 years time ?

A9: On our homestead/smallholding, which is nice. Now it’s devoid of full grown perennials; just a windy muddy grassfield (former agricultural land), so looking forward to that.

Q10: Describe your living accommodation

A10: It’s a muddy mobile home and I love it =]

If you would like to be next please send me a PM

Fred's Music Column

The end: This is going to be my last column in the Psoriasis Club newsletter. I have been doing a music column for around two and half years now, but I no longer have the enthusiasm to keep it going.

I have enjoyed trying different things and even ran a survey to try and get a feel of what you wanted, but I hardly ever get any feedback and as I once said in one of my columns (July 18) I feel like I'm just talking to myself. I'm running out of stuff to write about, I'm still a huge fan of music and could probably bore you all to tears but I feel it's time for me to call it a day and put my efforts into other places I use for music.

This also means that I will no longer be running the monthly members music recommendations. But all is not lost, you may have noticed KatT recently took over the music quiz, well she has also decided to take over the recommendations too. I wish her well with it and look forward to taking part from the other side.

It was fun whilst it lasted and I hope I haven't disappointed many people and thank you for reading. I will still be throwing the odd bit of stuff in my thread on the forum which you can find Here but it's time for me to turn off the amp on the newsletter and do something else with my music.

jiml suggested: They Don't Know by Kirsty McColl
KatT suggested: Laughing by The Guess Who
wooleyb suggested: The Power of Love by Frankie Goes to Hollywood
JohnB suggested: High On Emotion by Chris De Burgh
Raxyl suggested: 7 Years by Lukas Graham
Kat suggested: I Second That Emotion by Smokey Robinson & The Miracles
Caroline suggested: In The Rain by Sam Brown
Mrs Fred suggested: I Want To Be Free by Toyah
Fred suggested: Mad by Boogie Beasts
D Foster suggested: Strange Fruit by Billie Holiday

Listen on: Deezer | Spotify

Keep listening to music, it can touch you in a way you will always remember later on in life. Also go out of your way sometimes and try something different away from mainstream.

Fred

Music quiz with KatT

Music Quiz: Score 1 point for each correct answer. *You get a bonus point if you find out what these artists have in common!!!

Who is the artist or band behind the following hit songs? (multiple choice)

Song: Artist/Band:

#1: Stay #A Lipps Inc

#2: Hey! Baby #B: Billy Swan

#3: Green Tambourine #C: Sir Mix-a-Lot

#4: I Can Help #D: Maurice Williams and the Zodiacs

#5: Kung Fu Fighting #E: Bruce Channel

#6: Play That Funky Music #F: Dexy`s Midnight Runners

#7: Knock On Wood #G: Lemon Pipers

#8: Funkytown #H: Carl Douglas

#9: Come On Eileen #I: Amii Stewart

#10: Baby Got Back #J: Wild Cherry

If you would like to leave some feedback you can post in the Newsletter thread Here

Johnb's Recipe Spot

This months the recipe is Gnocchi with Chorizo

Oh my goodness is that the time? Where has this month gone?

Time for a very quick and immensely tasty Tea/Dinner/Supper or whatever you call it in your time zone. Gnocchi and Chorizo
Yep a bit of a culture clash, but oh boy is this tasty! This is how fusion food should taste.

Start off by getting a large pan of salted water boiling ready for the gnocchi.
Fry off around 100g of finely diced chorizo over a medium high heat in an ovenproof frying pan. While the chorizo is frying off halve 125g of cherry tomato. After the chorizo has been frying for around 5 minutes add the tomatoes and cook for a further 5 minutes. Wilt in to this mix 125g of baby leaf spinach. It will just take a minute or two. Then add a couple of fat cloves of garlic and a half a teaspoon of chilli flakes. If you are not a fan of heat then reduce the chilli flakes a tad but I wouldn’t omit completely. Cook for a further minute and season to taste.

Cook the gnocchi according to the package timings so it coincides with the rest of the dish. Drain and stir into the rest of the dish in the frying pan.

Set you grill to high. Tear up a nice ball of mozzarella cheese and scatter over the gnocchi chorizo mix in the frying pan, stick the whole lot under the grill and wait drooling for around 10 minutes while the cheese melts into a bubbly gooey .
. . . . . . . Oh I cant wait Feed Me NOW!!!

Serve with a little baby greens salad (for colour obviously) and enjoy.

Accompany with? Well I would prefer a chilled Peroni Rossa but these can be hard to come by so I guess a bog standard Peroni would suffice. As there is a reasonable burn from the chilli I’m sort of stuck for the wine so I’m going to go slightly weird and suggest a chilled Zinfandel Rose, it might just work.

Sorry guys there is non left!!

To read more recipes or add your own Click here

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 This months theme is Water

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Johnb From River to Sea

2 / 8

Fred Tulip opening to capture the morning dew

3 / 8

jiml Sun setting on the Norfolk Broads

4 / 8

Mrs Fred Our local river

5 / 8

D Foster A bit rough

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Raxyl Central Highlands Tasmania

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Wooleyb Beautiful Med, Christmas Day 2019

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Caroline The city of Leiden

* All images are property of the member mentioned below the image.

See more members photos Here

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!