Psoriasis Club Newsletter

October 2019

Welcome to your October newsletter The September edition went down very well. So thanks to those of you that choose to log in and comment .
We are still not getting seen in search engines as much as in the past but we are still attracting new members that are contributing to the club, so I would like to thank those new members for joining the club and helping to keep it active .

If you're a guest feel free to browse through the links here and join if you want to see 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

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.

Coffeeplease wrote ....

.Hi everyone! I'm happy to have found this forum while doing a google search for natural remedies. I was diagnosed around 1983 (about 10 years old) with a generic "psoriasis" diagnosis. In the beginning it covered both of my legs. I don't recall at the time if they gave me any treatment? That was thirty some odd years ago....

In my twenties it emerged again on my scalp, a spot here and there on my arms, elbows, back, stomach. Using various natural and over-the-counter lotions, creams, and sunlight/tanning beds have kept it pretty under control and felt very fortunate .... Read more here

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KatT wrote ..Hi.

Found this site while browsing for information on biologics. I have been diagnosed with plaque psoriasis , (which is hereditary in my family,) 25 years ago and psoriatic arthritis (the first in the family) 10 years ago. Wow, writing this down makes me feel old!

Started on biologics 2 years ago because of the arthritis. I was tired of being in pain. Still am!

I am on Cosentyx which pretty much cleared up my psoriasis, but my rheumatologist just increased the dose as it wasn't doing anything for the arthritis. Hope it works!.... Read more

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GirlFromTexas wrote ...Howdy

I’m not really a cowboy, it’s just an avatar. I’m really a middle aged urban Texan (having lived in NYC, LA, Wash DC, San Fran, as well as Houston and various DFW ‘burbs.), although I have Tx cred via various relatives. Diagnosed with psoriasis as a teen, and PsA at midlife. It ebbs and flows, and I am not entirely certain any of my meds are doing much to control it. So glad I found this forum, because I don’t know anyone else who has it, that I can talk to, who understands....... Read more

Members Treatments, Questions and comments

Duncan wrote

Looks like another drug has failed due to diarrhoea.
I tried Oteza. It was working but the longer I was on it, the worse my diarrhoea got. I am now on Skilerence. Only got to 2x 120mg tablets a day. No way will I get to 6 a day. Horrendous stomach pains at times, but the diarrhoea is now bad
Very limited what I can take due to high blood pressure . Read more here

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GirlFromTexas writes

Howdy - Currently on Cosentyx for 4 months, generally feeling better yay!

But having sudden sharp mental decline. Can still recite and analyze passages from Chaucer and Shakespeare no prob (retired Engl Lit teacher) but cant remember to lock the front door when I go out, turn off the coffee pot, pay bills on time, and recently had a “spell” where I was driving to a dr’s appointment, got confused, then lost, and ended up driving all over town for an afternoon - didnt know where I was going, or why, or where I was, or how to get home. I have lived in this same small town for 20 years!

Has anyone else experienced mental confusion while on Cosentyx? It is not listed as a side effect. Or could this be something else? Read more

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Kerry181185 wriote ....Skilarence skin looks worse

Hi all, I’m new to the forum. I started taking Skilerence three weeks ago and Ive worked my way up to 120 mg per day so far. Side effects are ok at the moment. A bit of skin irritation but only lasts 10-20mins so bearable. The only thing is that my skin looks worse! Is this something that can happen? Does it look worse before it gets better or does it take a while to kick in if it works?

Confused
Read more

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Fasteddie155 wrote

Skilerance is a great drug and works but the side affects for me on 120 mg is not bearable. I've tried it with food and yogurt, I've even cut the tablet in half and hid it in a soft sweet and swallowed half in the morning and half late afternoon but the cramps i get and sweats and going red is crazy.
I need to inform my dermatologist but after being on methotrexate and cyclosporine, I don't now what other options I have.

Any suggestions would be welcome as i'm sure you all know how i'm feeling. Read more

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edinburgh78 writes Cosentyx severe GI side effects

Hi.. Ive been searching this place and also the inspire page in the US and although GI / diarrhea is a listed side effect there doesnt seem much else on it: Novartis is stating it cannot cause IBD... it can only bring it on if the person had it already but I have seen one person on this page and another in the US who did not have it before, and do have it now.

I think I fall into this category... the pain started on my second monthly dose after the 5 loading doses...I was doing really well until then and the GI issues were severe: severe diarrhea for a week with severe cramping.. this lasted a month, now I am on anti ulcer meds which help a little with pain but the pain was across the whole system from stomach down to colon. though mostly upper. Read more here

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Psoriasis News and other related items

Could images help in psoriasis diagnosis in parts of China

Psoriasis is a chronic inflammatory skin disease which holds a high incidence in China. However, professional dermatologists who can diagnose psoriasis early and correctly are insufficient in China, especially in the rural areas. A smart approach to identify psoriasis by pictures would be highly adaptable countrywide, and could play a useful role in early diagnosis and regular treatment of psoriasis. Read more here

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Taltz sustained high efficacy over 4 years

This study evaluates the efficacy and safety of recommended ixekizumab (IXE) dose over 4 years (204 weeks) from UNCOVER‐3 study.

Methods:
UNCOVER‐3 was a randomized, double‐blind, multicenter, Phase 3 study wherein patients with moderate‐to‐severe plaque psoriasis received placebo, IXE 80 mg every 2 weeks (Q2W), IXE 80 mg every 4 weeks (Q4W) (both IXE groups had 160 mg starting dose), or etanercept 50 mg twice weekly. At Week 12, all patients switched to IXE Q4W dose for the long‐term extension (264 weeks). After Week 60 and at investigator's discretion, patients could receive dose adjustment to IXE Q2W. The efficacy endpoints at Week 204 were percentage of patients achieving PASI 75/90/100, sPGA score of 1 or 0, and those achieving PSSI=0, NAPSI=0, and PPASI 100. Efficacy data were summarized through 204 weeks using as‐observed, multiple imputation (MI), and modified nonresponder imputation (mNRI) methods. Read more of the study here

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Tremfya update (Update)

This update is from the Tremfya thread and tells of the application to the FDA for approval to cover psoriatic arthritis and later will be applying to the EMA for European approval

Read more

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 Turnedlight

What is the best part of the day ?

Around 3.22pm

What would you like to be remembered for ?

You think people are going to remember me?

What's top of your bucket list ?

Probably hugging a lion but that would be the last thing I do so I’m saving it.

Do you have any pets ?

I have always had pets - cats, hamsters, rats, the spiders in the corner of the room, unicorn.

Your biggest achievement was ?

Getting this far through life.

What did you have for breakfast today ?

I had scrambled eggs and bacon - yum.

How do you relax ?

I probably don’t properly relax, though watching films or reading can take my mind off things.

Do you know the words to your national anthem ?

I’m not American if that’s what you mean.

What would you like to see invented ?

Transmat device so we don’t have to spend hours in cars.

Do you play any board or card games ?

I like scrabble but struggle to get anyone to join in.

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

Fred's Music Column

Caroline's Comments: Some of you may have noticed Caroline always gives a comment on each of the members music recommendations. I think she may have started a new trend as Myself and Craig also had a go and it's interesting to see the difference in opinions of music.

Going by the feedback I get about my music column the members recommendations is probably the most popular part, so I have decided as long as a few of you keep taking part I will keep it going. It would be nice to get a few more choices and the recommendations is open to all members, so keep an eye out for my thread and who knows you may end up sharing something others have missed.

Will you be listening to this months members music recommendations below and giving some feed back in the Newsletter Thread ?

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Three albums I will be trying this month:
All Mirrors by Angel Olsen
Colorada by Neil Young and Crazy Horse
The Livelong Day by Lankum

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Quiz Time: 1 point for each one you get right.

Q1: Which band were also knows as "Sigma 6" "Meggadeaths "The Abdabs" "Screaming Abdabs" "Leonard's Lodgers" "The Spectrum Five" and "The Tea Set" ?.
Q2: Why did "The Move" give up royalties from "Flowers In The Rain" to charities chosen by Harold Wilson PM ?
Q3: Robert Fripp is the only member of which band to play since its inception in the late 1960s ?
Q4: How did the band "Three Dog Night" get their name ?
Q5: How did the "Bay City Rollers" choose their name ?
Q6: How did Marillion get their name ?
Q7: Name the band leader that disappeared December 15, 1944 ?
Q8: Which band asked Val Doonican to say two words on one of their songs ?
Q9: Which band were once named "Morris and the Minors" ?
Q10: What was the original name of the band "Gerry And The Pacemakers" ?


Answers
A1: "Syd Barrett came up with "Pink Floyd" after discovering another band called The Tea Set, were to perform at the same gig.
A2: A postcard with a naked cartoon of Harold Wilson ended in court, today all royalties still go to charity.
A3: Robert Fripp is the only original member of King Crimson still playing with the band today.
A4: A magazine article said indigenous Australians slept with dogs to keep warm, if very cold it was called a 3 dog night.
A5: Wanting a more American sounding name than "Rollers" a dart was thrown at a map that landed near "Bay City, Michigan"
A6: First known as Silmarillion after J.R.R. Tolkien's book The Silmarillion it was later shortened to avoid copyright problems.
A7: Glenn Miller was travelling in a single-engine UC-64 Norseman over the English Channel but was never seen again.
A8: Val Doonican said "Hello There" on The Bonzo Dog Doo-Dah Band's "The Intro and the Outro" (Bet Jim got that one right)
A9: Morris and the Minors played one gig before changing their name to "Madness"
A10: "Gerry Marsden and the Mars Bars" had to changed their name after being contacted by the "Mars" company.

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 "Flying"

D Foster suggested: Night Flight by Led Zeppelin
JohnB suggested: Magic Fly by Space
Raxyl suggested: One Fine Day by Fear of Flying
Grizzly Bear suggested: Fly Me To The Moon by Frank Sinatra
wooleyb suggested: Eagle by Abba
Kat suggested: Leaving On A Jet Plane by Peter, Paul and Mary
jiml suggested: I Believe I Can Fly by R.Kelly
Caroline suggested: High Flying Bird by Jefferson Airplane
Mrs Fred suggested: Wings Of Speed by Paul Weller
Turnedlight suggested: Kites by Simon Dupree
KatT suggested: Give Me A Ticket For An Aeroplane by Jefferson Airplane
Fred suggested: If I Had Wings by Zoe Schwarz Blue Commotion

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

Let me paint you a picture . . . . .

It’s gone 12:00 and has been a hideous and frustrating Friday morning and I know now the afternoon is just going to be a world of pain. I’m late for my lunch, still need to wash my hands, take my overalls and body harness off and make the regulatory phone call to Mrs John to let her know she can’t claim my pension just yet. The call eventually turns to me asking what would you like for tea? The replay; “I don’t know, no you decide! I’m not cooking”. Arrrgghh!! Just what I need. I know I’m going to be working later than I would like and if I had known I would have taken something out of the freezer to at least give me a fighting chance.

So I get home and have a peruse in the fridge and as is normal for a Friday there is not much exiting in it. A half a red bell pepper, a bunch of spring onions (scallions) that look like they have seen better days and half a dozen manky mushrooms. Ooo a pack of Parma ham that is about to expire. How on earth . . . . . . Hang on I seem to remember there was some rice in the freezer! Ahh a lightbulb moment . . . Fried Rice!

John B’s Emergency Fried Rice
So first off ping - sorry microwave the rice to defrost. Don’t let it get warm. The rice needs to be cold/ before you start frying it or the texture comes out all wrong (and NEVER use just cooked rice – that’s even worse). Thinly slice the spring onions, crush a couple of cloves of garlic and if you have any finely grate a couple of teaspoons worth of ginger. I always have some in the freezer, it’s also easier to grate when it’s frozen. Hack the red pepper into 5mm chunks and clean and thinly slice your mushrooms. Separate the ham into slices and cut into 6mm wide ribbons across the slice (although any ham or bacon will do just as well).

Get your Wok and heat it until it is smoking hot then wait another minute before adding your oil. Always use a good Ground Nut or Rape Seed oil. Never use olive oil, corn or vegetable oil – they can’t stand the heat and will burn. Also never use the low calorie spray oil – actually never use it at all. Over the weekend of writing this Mrs John was looking into buying a new frying pan as the one she used was starting to fail, the non stick coating was becoming somewhat non stick and missing in places. The salesman told her he had had several instances lately where manufacturers were no longer honouring ‘Lifetime Guarantees’ on non stick cook wear where the owners had used the Low Cal sprays. Apparently there is something in their chemical make up that degrades and eventually strips the non stick coatings. So beware! Only use natural stuff!

Sorry where was I. Oh yeah, by now your pan will be smoking like an old Scouse Docker so roll the oil around your Wok with a deft flick of the wrist to cover as much of it as you can. Now throw in your spring onions, garlic and ginger in and cook on a full heat for a few moments. Keep the food in constant motion or it will burn and burnt garlic is nasty. Add the pepper and mushrooms and Parma Ham and cook for a few more minutes. You can add a handful of frozen peas (for colour) if you wish. The rice can go in now. Season with a little white pepper (no salt) and carry on stirring for about 5 minutes. If you want at this point you can add an egg. Crack it into a glass just in case. This is where the Wok comes into its own for this type of cooking. Pull all the rice up the side of the wok all around it to create a clear well in the middle. A little bit at a time drop some egg in cooking quickly and shredding it as you go until its all in and cooked. It wants to look like a halfway house between an omelette and scrambled. Thoroughly mix this through the rice then give it a good sprinkling with light Soy Sauce and mix it all up again. Once the dish is piping hot a nice option is to drizzle over and mix in some sesame oil and serve immediately.

Qîng xiǎngyòng
As this was an emergency dish I had not really put much thought into what to have with this beverage wise but I suppose you could not go too far wrong with a nice warm Saki but I think it would be more appropriate to make a nice fresh pot of green tea to swill it down with.

Just be aware if you made this with rice that has been frozen please do not freeze this dish or leave it overnight for later. Rice develops a toxin from the bacteria on it that does not break down when reheated and it can make you extremely unwell.

Yes you can use a large frying pan if you don’t possess a wok but it may find it will not get as hot as a wok and non stick surfaces can be badly damaged by overheating. Treat yourself to a Wok a nice cheap carbon steel job. Don’t waste your money on a non stick – they are rubbish. Nothing will stick to a correctly seasoned wok. If anyone wants to know how to look after their wok or season a new one I could post some tips.

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 Gardens or Flowers

* 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!