Psoriasis Club Newsletter

October 2020

Welcome to your October newsletter.

September has passed and we are now on the countdown to winter. For those of us in the northern hemisphere it's a time for preparing for dark winter nights and tidying up the gardens. It's been a funny old year so far with the constant covid threat and the extremes of weather we have seen with wildfires devastating areas in Russia, Australia and the USA. And torrential rain and flooding around the world ..There are noticeable changes to weather patterns. Let's hope the last quarter of the year gets better and life can resume with some sort of normality... The one thing you can count on is there will always be a warm welcome on the forum no matter what's happening elsewhere in the world.

Why not pop in for a chat we have lots of threads in the off topic section including the chatting thread where you can write about anything, if you do someone will soon reply. You can access it Here.

Please log in and comment on any of the recently updated threads your comments are always welcome and helps to keep the forum vibrant, see further into the newsletter for threads that you could comment on

The off topic has been as busy as ever and games and quiz board is proving very popular . Why not pop in and have a bit of fun. 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 HERE.

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

This months stats

New Introductions and updates

Becs89 wrote What's your Tremfya experience

Hi all
I'm new to this forum and have just started on Tremfya with my first shot 3 days ago.
I was hoping to find others out there already taking this medication. Did it work for you? When did you start seeing results? Any side effects? Click here to read more

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Glenda Grant has just updated her thread with before and after pictures

Hi I thought I would post some before and after pictures of how well Skyrizi is working for me

Click here to see the pictures

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To read more or to start a thread about your treatment or update your own ........... Click here

Psoriasis News and other related items

Siliq / Kyntheum vs fumaric acid esters

This study compared Siliq / Kyntheum (brodalumab) to fumaric acid esters (FAE) in terms of clinical efficacy, patient‐reported outcomes, and safety.

Brodalumab is a fully human monoclonal immunoglobulin IgG2 antibody that binds to the human IL‐17 receptor subunit A and by that inhibits the biologic action of IL‐17A, 17F, 17C, and 17E. Therapy with fumaric acid esters (FAE) is a well‐established and widely used first‐line systemic treatment for subjects with moderate‐to‐severe plaque psoriasis

The objectives were
To compare brodalumab to FAE in terms of clinical efficacy, patient‐reported outcomes, and safety in subjects with moderate to severe plaque psoriasis who were naïve to systemic treatment........ Read more here

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New E.U. Measures to avoid potentially fatal dosing errors with methotrexate

*The UK have said they will mirror the EMA advice.

Quote
Information for patients:
If you are taking methotrexate for rheumatoid arthritis, psoriasis or Crohn’s disease, you must take it just once a week.
Take your methotrexate medicine on the same day every week.
Follow the instructions on the packaging of your methotrexate medicine.
You will receive a patient card with your methotrexate tablets (or oral liquid). Read it carefully because it tells you how to take your medicine.
Show your patient card to any new healthcare professional who treats you so that they know that you take your methotrexate medicine once a week.
read more here

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This little study suggests mothers quality of life is affected more by their child's psoriasis than fathers

Psoriasis is a chronic skin condition that in one third of cases starts in the first two decades of life. The disease might impact the quality of life (QoL) of the affected children and their caregivers. The issue of gender differences in the assessment of psychological burden of dermatological conditions has been the subject of few studies with contradictory results.

The objectives:
The aim of this study was to investigate the differences in the impact of childhood psoriasis on mothers’ and fathers’ well‐being using Family Dermatology Life Quality Index (FDLQI) Read more here

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Siliq / Kyntheum real life retrospective 24 week psoriasis study

This study evaluated the effectiveness and safety of Siliq / Kyntheum (brodalumab) in patients with moderate to severe plaque type psoriasis in a real‐world setting.

Brodalumab was efficacious and safe in moderate‐to‐severe plaque‐type psoriasis in the AMAGINE trials; published reports under real‐life conditions are limited.

The objectives:
To evaluate the effectiveness and safety of brodalumab in patients with moderate‐to‐severe plaque‐type psoriasis in a real‐world setting.

This observational, retrospective study enrolled adult patients (≥18 years) with moderate‐to‐severe plaque‐type psoriasis who underwent 24‐weeks of treatment with brodalumab at 17 Italian dermatological centres. Baseline data included demographics, comorbidities, age of onset and duration of psoriasis, and previous treatments. Psoriasis Area and Severity Index (PASI), Physician Global Assessment (PGA), static PGA of Genitalia, Dermatology Life Quality Index and patient satisfaction were assessed at weeks 0, 4, 12 and 24; adverse events were recorded. read more here

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Members treatments, questions and comments

Martin wrote of Total negligence

Please log in and read Martins horror story of his treatment
After failing on kyntheium. I was told by Dr. to come off it and I would be getting a telephone consultation. I got my consultation over the phone. The only thing is I knew nothing about it, as I got my appointment letter the day after the phone call. so obviously missed it. At this point my psoriasis and arthritis kicked in big time.. in absolute agony I ring the dermatology department. asking for another appointment. I got my fone consultation.. or rather I didn't as they rang the wrong number!! so I ring again.. and give them my number again, ok they said we will ring you. but it will be in 6 days time as the Dr's are busy. All the while I'm unable to walk at this point due to arthritis, my right foot swelled, cracked and split. So I got my phone consultation.. or rather I didnt cos guess what.. they rang wrong number again. So I ring back fuming they agree to another consultation, and yippee they actually phoned right number, so after speaking to the Dr she said I should go back on cosentyx, ok I said, the Dr said it should be with you in 10 days.. great I said. waited 3 weeks and nothing. rang dermatology and,, she forgot to process the prescription.. I haven't slept in a month due to severe pain and sore skin. I cant walk. cant sit or lay down due to pain,,, sorry for the rant but needed to get it off my chest. and I'm tempted to seek legal advice. you wouldnt leave a dog in this much pain

More here

Editors note please log in and see Martins photos and please comment on what I think is a terrible piece of negligence by his dermatologist

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Want more?

Music with KatT

Welcome to music with KatT: Where you can test your knowledge on music and see other member's music recommendation!

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Music Quiz: Score 1 point for each correct answer.

Can you match the artist/group/soundtrack with the song? (multiple choice)

Artist: Song:

#1: Ray Parker Jr. #A: Howlin for You

#2: Bobby Pickett #B: Thriller

#3: The Rocky Horror Picture Show #C: The Beautiful People

#4: Ramones #D: Ghostbusters

#5: The Black Keys #E: Red Right Hand

#6: Nick Cave and the Bad Seeds #F: The Reaper

#7: Echo and the Bunnymen #G: Monster Mash

#8: Michael Jackson #H: Time Warp

#9: Marilyn Manson #I: People Are Strange

#10: Blue Oyster Cult #J: Pet Semetary

Answers
1 goes with D
2 goes with G
3 goes with H
4 goes with J
5 goes with A
6 goes with E
7 goes with I
8 goes with B
9 goes with C
10 goes with F


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 Day of the week .
Raxyl suggested: Good Friday by The Black Crowes
D Foster suggested: Rainy Days and Mondays by Carpenters
Grizzly Bear suggested: Friday On My Mind by The Easybeats
wooleyb suggested: Friday I'm In Love by The Cure
Caroline suggested: Absolutely Me by Caro Emerald
jiml suggested: Friday Night by The Darkness
Kat suggested: I Don`t Have To Be Me ('Til Monday) by Steve Azar
Fred suggested: One of These Days by Pink Floyd
Mrs Fred suggested: Manic Monday by The Bangles
KatT suggested: I Don`t Like Mondays by The Boomtown Rats

Listen on: Deezer | Spotify

Show Recommendations

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

Johnb's Recipe Spot

This Month One Pot Creamy Chicken Thighs

OMG now this is one you just HAVE to try. Its one of those really tasty easy eating dishes you could stuff your face with until you burst.

Right, dig your favourite casserole dish from the deepest darkest recesses of your kitchen cupboard heat up a good glug of olive oil in it and sear a half dozen chicken thighs. Now its up to you but we used bone-in skin-on ones for the flavour, but I know some can be squeamish of bones in their meat.
When they are nice and golden, remove and keep warm while you do the rest of the dish. Carry on by frying off a sliced onion and 4 cloves of crushed garlic over a low heat until translucent.

Throw the chicken back in along with around
100g of button mushrooms,
80g of chopped sun blush tomatoes (sun blush?? don't these foodie persons use some poncey descriptions),
400ml of chicken stock
a teaspoon of chilli flakes and a good grind of salt and pepper.

Bring all this up to a simmer, cover then simmer.
After an hour chuck in 100g of Orzo pasta (it looks like rice grains), give it a good stir and carry on cooking for another hour with the lid on.
As you are ready to serve stir through 2 tablespoons of crème fraiche and a couple of big handfuls of baby leaf spinach. Its ready to eat once the spinach has wilted.

This really needs a good rustic crusty bread to go with it.

It could do with a good dry Italian White to wash it down, Chilled Soave anyone?

To read more recipes or add your own Click here

Members Photos

I'm 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 Weather

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!