Psoriasis Club Newsletter

September 2019

Welcome to your September newsletter The August edition was well accepted and the new format got many positive comments , you will get the best experience of the newsletter if viewing on a tablet or phone if you view it in landscape mode .
We are still not getting seen in search engines as much as in the past but we are promoting the club more on social media and hopefully it will bring a few extra members in.

If you're a guest feel free to browse through the links here and join if you want to see more. If you're already a member do log in as there is more to see on the forum when logged in and have a look at what's new ...there are links here to members photos, poetry, music and lots more. 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 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

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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.

NomorePeggy wrote ....

Hello, I just joined the group a few minutes ago. I am so glad to have found this forum so I don't feel so alone now. I also have Multiple Sclerosis. With the MS and the psoriasis both being an autoimmune disease it complicates the way in which the psoriasis can be treated. .... Read more

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Jan in NJ wrote ...

Just joined. For years I've used the clear tape, hadn't had a flare up in years. I have small patches on my shoulder and arm and a different type on my elbows. the patches on my arm are red and raw and very itchy in this heat. I can't remember what they are called. I'm pretty sure antibiotics caused this bad flare up.. Read more

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g137556s wrote ...

I have had Psoriasis in one form or another since I was about 5 years old. Back then, it was on my ankles. I went away after several years. Then in my early teens, I got it on my knees for several years before it went away. Then in my mid twenties I got it on my knuckles and have had it for several years. I am not 57 and about 4 years ago I started getting it on the side of one of my fingers and now the palm of my right had, unfortunately I am right handed. I have been dealing with it and hoping it would disappear after a couple of years but it has been getting larger and larger...... Read more

Psoriasis News and other related items

Ilumya / ilumetri response time could be identified by week 8

This study suggests patients unlikely to respond to Ilumya / Ilumetri (tildrakizumab) could be identified by week 8, and those likely to achieve a PASI >90 response could be identified as early as week 4.

Quote:
Two randomized controlled trials (reSURFACE 1 and 2) have demonstrated the effectiveness of tildrakizumab, a high‐affinity, humanized, IgG1κ, anti‐interleukin‐23 monoclonal antibody, for treating moderate‐to‐severe plaque psoriasis in the first 28 weeks. Read more here

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Lilly says Taltz beats Tremfya in a head to head trial achieving skin clearance at week 12

Eli Lilly announced today Taltz® (ixekizumab) met the primary and all major secondary endpoints up to week 12 in the Phase 4 IXORA-R study, which evaluated the efficacy and safety of Taltz versus TREMFYA® (guselkumab) in people living with moderate to severe plaque psoriasis (PsO). The IXORA-R trial is the first completed head-to-head (H2H) trial between an IL-17A inhibitor and an IL-23/p19 inhibitor using the Psoriasis Area Severity Index (PASI) 100 score as the primary endpoint.

At 12 weeks, Taltz met the primary endpoint by demonstrating superiority in the proportion of patients achieving complete skin clearance compared to TREMFYA as measured by PASI 100. In addition, Taltz met all major secondary endpoints up to week 12, which include superiority over TREMFYA in the proportion of patients achieving PASI 75 at Week 2, PASI 90 at Weeks 4 and 8, PASI 100 at Weeks 4 and 8, static Physician's Global Assessment (sPGA) 0 at Week 12 and PASI 50 at Week 1. Lilly plans to share results on the remaining key secondary endpoint of proportion of patients achieving PASI 100 at 24 weeks in 2020. Read more here

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EMA Reviewing risk of dosing errors on methotrexate (Update)

EMA’s safety committee (PRAC) is recommending new measures to avoid dosing errors that have led to some patients incorrectly taking methotrexate-containing medicines daily instead of weekly.

The new measures include restricting who can prescribe these medicines, making warnings on the packaging more prominent and providing educational materials for patients and healthcare professionals. In addition, to help patients follow the once-weekly dosing, methotrexate tablets for weekly use will be provided in blister packs and not in bottles (or tubes).

Methotrexate is used for treating both inflammatory diseases and cancers. When used for inflammatory diseases, such as arthritis and psoriasis, it is taken once a week but for some types of cancer, a much higher dosage is needed and the medicine is taken more frequently. Mistakes in prescribing or dispensing methotrexate as well as misunderstandings of the dosing schedule have led to patients taking the medicine daily instead of weekly for inflammatory diseases, with serious consequences, including fatalities.

The risk of dosing errors with methotrexate-containing medicines is well known. However, despite several measures already in place, these errors continue to be reported.

Read more

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Skyrizi gets NICE approval for psoriasis

Following on from Skyrizi gets positive opinion from CHMP Skyrizi (risankizumab) has been given the go ahead from NICE (National Institute for Health and Care Excellence) in the treatment of moderate to severe plaque psoriasis.

Risankizumab is recommended as an option for treating plaque psoriasis in adults, only if: The disease is severe, as defined by a total Psoriasis Area and Severity Index (PASI) of 10 or more and a Dermatology Life Quality Index (DLQI) of more than 10 and the disease has not responded to other systemic treatments, including ciclosporin, methotrexate and phototherapy, or these options are contraindicated or not tolerated and the company provides the drug according to the commercial arrangement. Read more here

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Psoriasis Quality Of Life Score

As we reported last moth about the introduction of our more meaningful psoriasis quality of life scoring system , it was decided to add a printable version so members or guests can print off their score and show their doctor or dermatologist ....the printable link is at the bottom of the thread ......Read about it here Read more

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DMF (dimethylfumerate) Quality Of Life study

This study looked at quality of life outcomes in adults with moderate‐to‐severe plaque psoriasis treated with dimethylfumarate (DMF)

Psoriasis is a chronic inflammatory skin disease associated with quality of life (QoL) impairment. BRIDGE was a randomised, double‐blind, phase III study comparing the efficacy and safety of dimethylfumarate (DMF) with a fixed combination of fumaric acid esters (FAE) or placebo for the treatment of moderate‐to‐severe psoriasis.

This post‐hoc analysis investigated treatment effect on QoL overall and by patient sub‐groups categorised by disease severity. Week 8 efficacy responses were also investigated as possible predictors of Week 16 Dermatology Life Quality Index (DLQI) outcomes.

Methods:
Patients were randomised to receive a maximum daily dose of 720 mg of DMF, FAE (gradual up‐titration) or placebo for 16 weeks. Psoriasis Area Severity Index, Body Surface Area, Physician's Global Assessment and DLQI were assessed at baseline, Week 8 and 16. DLQI 0–1 indicated ‘no effect on patient life’. Associations between baseline severity, Read more here

Want more?

Q and A's with a Psoriasis Club member

Each month one of our members gets invited to choose from a wide range of questions and give answers to 10 of them. This month it was wooleyb

What would be your last meal?

Definitely have to say Roast Beef, Yorkshire puddings and all the trimmings….. I’m not really a dessert person, I’m sweet enough ? but if I had to choose, I would have raspberry trifle… of course washed down with a nice Brockmans gin & tonic.

Any sports interests?

I am a huge sports fan, mainly football though. An avid Liverpool FC fan, I also played football from the age of 11 and in my heyday played for Birmingham City, Aston Villa and West Bromwich Albion Women’s teams and finished off my career with a short spell at Chelsea.

What did you have for breakfast today?

A double sausage and egg McMuffin, hash brown and orange juice – my fave breakfast and best hangover cure ever.

What did you last laugh at?

Just met a Chinese drug addict, he said ‘’have you seen my cocaine’’? I said ‘’not since he starred in The Italian Job’’.

What would you like to be remembered for?

First and foremost a kind, thoughtful and fun person to be around. A loyal, dependable and trustworthy person who is always on hand to help and support.

Do you know the words to your national anthem?

I do know the words yes but don’t like it and would much prefer the national anthem to be Jerusalem by William Blake – this is also the anthem they play for England at the Commonwealth games.

Did you drink or smoke underage?

Yes, didn’t everyone? I smoked at 16 and always remember at a football presentation when I was 15, I got so drunk on Pernod and blackcurrant that I have never ever touched it ever again!

What would you like to see invented?

Teleportation, so I don’t have to hang around at airports, train stations or wait for a taxi……. I could just go anywhere in the world near or far and save so much time. On a humanitarian level clean water for third world countries to utilise.

Ever broken any bones?

Oh, jeez where do I start! In a nutshell yes… starting top to bottom, nose, three ribs, wrist, fingers and thumb, leg, ankle and toes. All for the love of sport!

How far away from your birthplace do you live?

270 miles – I was born in Brighton, Sussex and now live in Liverpool, Merseyside.

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

Fred's Music Column

Van The Man: Yesterday 31 August Van Morrison celebrated his 74th birthday so here is a brief history to celebrate his huge input to the music industry.

He grew up listening to artists such as Jelly Roll Morton, Ray Charles, Lead Belly, Sonny Terry and Brownie McGhee and Solomon Burke from his farthers collection which also contained vast amounts of Blues, Gospel, Jazz, Country and folk. He got his first acoustic guitar at the age of 11 and formed his first band "The Sputniks"

A few more short lived groups existed and he started learning the saxophone so he could play in other peoples bands. At 17 he started touring with the "Monarchs" and in 1964 he formed another band of his own by the simple name of "Them" which was to be a big turning point in his climb up the ladder.

After a few hits with "Them" he went solo after a dispute with their manager and "Brown Eyed Girl" quickly becoming his signature tune. From there he just got better and better and was a sell out at all his live shows (I've seen him and he was great) he also went on to turn out 40 albums to date.

Happy birthday Van The Man. I'm sure there is still more in there just waiting to come out.

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Quiz Time: A bit of a change this month, just answer each question. 1 point for each one you get right.

Q1: How many strings does a "Jews Harp" have ?.
Q2: Which British Sir had #l’s in the 50’s, 60’s, 70’s, 80’s, and 90’s ?
Q3: Who had the first names "Robert Nesta" ?
Q4: What do the bands Golden Earring and Shocking Blue have in common ?
Q5: How many chart singles did Val Doonican have. 0, 3, 16 ?
Q6: The only artist inducted twice in The Country Music Hall of Fame is ?
Q7: What family of instrument is the Saxophone ?
Q8: Apple, Deezer, Spotify. Which one offers the most tracks ?
Q9: How many countries took part in the first Eurovision song contest in 1956 ?
Q10: According to Guinness World Records what is the best selling single ?

Answers
A1: It doesn't have any strings, it has a one pitch piece of metal which is plucked over the players lips.
A2: Sir Cliff Richard is the only singer to have a number one single in the UK in five consecutive decades.
A3: Bob Marley has the first names Robert Nesta but on some documents it is written Nesta Robert.
A4: They are both Dutch and formed in The Hague 1961 and 1967 respectively.
A5: Val Doonican had 16 singles in the charts but none made it to #1 (Bet Jim got that one right)
A6: Roy Rogers first as a member of the Sons of the Pioneers in 1980, and again as a soloist in 1988.
A7: The Saxophone is classed as a woodwind instruments, because sound is produced by an oscillating reed of woody cane.
A8: Deezer offers 53 million licensed tracks. Apple 50 million and Spotify falls short with just over 40 million.
A9: Seven countries participated, it was the first and only time each country submitted two songs.
A10: Bing Crosby "White Christmas" It was in the first recognition in 1955 and still hold it's place today.

I hope you enjoyed the new quiz and I welcome your feedback.

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 "Water"

wooleyb suggested: Orinoco Flow by Enya
JohnB suggested: Loch Lomond by Steve Hackett
Raxyl suggested: Drinking from Sun by Hilltop Hoods
D Foster suggested: Old Man River by Paul Robeson
jiml suggested: Suzanne by Leonard Cohen
Grizzly Bear suggested: Rhythm of the Falling Rain by The Cascades
Caroline suggested: Aquarius by Within Temptation
Turnedlight suggested: Steam by Peter Gabriel
Mrs Fred suggested: Born On The Bayou by Credence Clear Water Revival
Fred suggested: Crest Of A Wave by Rory Gallagher 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

Our Mams Crimble Cake

YEAAAHH!!!!!

It’s that time of year when a couple of years ago Grizzly would drive us all mad with his pre-Christmas sparkly celebrations and believe it or not, NOW is the time to make your Christmas cake!

In a break from the norm, as there are so many ingredients, here is the list of goodies you need

3/4lb (340g) Butter at room temperature
3/4lb (340g) Soft Brown Sugar
1lb (453g) Flour
6 Large Eggs
Pinch Salt
1lb (453g) Sultanas
1lb (453g) Currants
1/4lb (113g) Raisins
2oz (57g) Glace Cherries
6oz (170g)Candied Peel or mixed fruit
1/4lb (113g) chopped blanched almonds
½ tsp Mixed spice
2tbl spoon Treacle
Gravy Browning

Sherry
Brandy

Lets get Tipsy
So start the night before, measure out the sultanas, currants and raisins into a bowl. Take two really good measures of Granny’s best Sherry and treat them to a really good slug of it with a bit of warm water as well and leave to rehydrate a little overnight. You just want to plump them up a bit, not teach them to swim. The second measure is for the Chef.

In with the Hard Graft
Start by draining all the excess liquid off your fruit and sit the tin of treacle and a tablespoon in a bowl of warm water. Take your aggression out by beating the sugar into the room temperature butter (DO NOT think you can get away with using Marg. It just makes it taste greasy). Once the butter and sugar take on a nice creamy consistency start adding the eggs, one at a time, incorporating each one before adding the next. Just a word of caution, please don’t break your eggs into the mix directly, just in case one of them is off. Or if you are clumsy like me you end up depositing shell into the mix.

Dry your pre-warmed spoon and dollop 2 tablespoons of lovely dark sticky treacle into the batter mixing in well. Then this is where the gravy browning comes in. Now this stuff has never seen a cow, it has no flavour, it is not concentrated stock or the wet equivalent of an Oxo cube, it is just colour. Drizzle a little at a time into the batter and mix it in. You want to add enough so that the batter takes on a nice rich dark brown hue. In a clean bowl throw in all your fruit and the mixed peel and sieve a small amount of the flour over them. Give them a shake to thinly coat all the fruit and peel in the flour. This helps to stop all the food from obeying Newton and sinking to the bottom of the cake during cooking. Now add the flour salt and mixed spice, sifting it into the batter and once combined mix in the fruit and nuts. (Treat yourself to a new jar of the stuff, its shelf life isn’t brilliant and it rapidly loses its flavour over time.)

Tin time.
This mix will need a 9 inch diameter x 31/4 inch deep cake tin (230mm x 82mm) cake tin. Grease it well and line with greaseproof paper. Then it is preferable to wrap the outside of the tin in brown paper (the stuff you wrap parcels with. Fold it so it is about 50mm 2” taller than the tin and four layers thick. Tie it around the tin with some string (just make sure the string is not from manmade fibre). This helps to stop the outside from drying out/ burning / case hardening when baking. Then dollop the cake mix in the tin.

Now to cook.
As it has taken all afternoon and a lot of hard graft making this you might not want to start baking it just yet unless you are a night owl. The mix will sit quite happily overnight in the tin. Pre-set the oven to 160°C / 325°F / Gas mark 3 and bake for 1 hour, then reduce the oven to 135°C / 275°F / Gas mark 1 and continue baking for another 5 hours. Yep that is right 5 hours. Start checking the cake after 4 hours. Use a knitting needle or metal skewer and stab the cake with it. If you can still see the cake mix on the skewer when you withdraw it the cake is not ready. Once it is cooked let it cool, but don’t take it out of the tin. When it is cool place in a nice air tight container tin and all and leave it somewhere cool and dark to mature.

Feed Me . . . . . . . FEED ME NOW!
Every couple of weeks take your cake out and treat it to a nice drink. The first time you do this you will need to stab the cake all over the top with a knitting needle / thick skewer. Then drizzle a glug of brandy all over the cake top. The stab holes allow the brandy to get deep into the cake. Repeat this 3 or 4 times up to December. You want to get it to the point where you just can’t hear it go ‘HIC’. Nice and moist but most definitely not soggy. Don’t forget the cardinal rule – One glug for you, one glug for me.

I need make up.
So around a fortnight before Christmas the cake can come out of its tin and gets decorated. This can be as simple or as complicated as you want. None of us are keen on marzipan so it gets omitted in our household but this does mean that the cake can leach through the icing if you use it. For a quick good looking cake just ice the top. Royal Icing is the best, the stuff that goes hard and crunchy. Layer it on about 6mm thick and pull your spatula off vertical from the top to make peaks all over. The pre-rolled soft stuff is just as good but will go on flat and rolled to thickness. You can either ice the sides or use a cake frill. If you ice the cake all over it will keep for several months in its container until you hack into it.

So to serve
A nice big slab hacked from the cake served with a nice crumbly cheese such as Wensleydale or Cheshire and a nice glass of decent Port is the only way to serve to get the full satisfaction from this masterpiece. If you want, a few segments of Egremont Russet apple compliment both the cheese and the cake very well.

This cake will last a good time after cutting into it but all is not lost if it starts to dry out a bit. Just take your slab of cake, dispose of the icing/marzipan stick in a bowl, nuke, sorry microwave for a minute and drown it in custard.

Please dont tell me you dont like fruitcake

Right then - who’s turn is it to wash up??.

To read more recipes or add your own Click here

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. This month the theme is Water to fit in with Freds music theme

* 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!