Psoriasis Club Newsletter

November 2019

Welcome to your November newsletter, it's been particularly busy on the forum in the last month with lots of activity in the off topic section, always a good thing to see . Why not pop in and have a chat or maybe update your threads or just come and say hi, you are always welcome .
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 .
Fred has been busy as always promoting us on social media so we are still being found. If you have any ideas for improving or promoting the club do come and tell us via the link below

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

Pictures of psoriasis

We are still compiling the thread with pictures of different types of psoriasis, we have had a limited response to the request so thought we would ask again, for those that missed it

You may already know that we have this thread "Types Of Psoriasis Explained" and I have included some dead links that people can copy and paste to see some images as I thought it could help them. But I just had a thought and wondered if we could have some of our own images from our members to give an example. If you can help and have an image contact Fred with the image. It will be anonymous and no faces shown unless you request it Read more

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New Introductions

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

John's intro....

Hi, I'm John. Been battling with Plaque psoriasis for a few years now. I'm pretty sure got it from taking Rivaroxaban (Xarelto). Had been on Warfarin for 16yrs + and body was no longer having it. Now on Pradaxa and blood is good. Plaque not so good. Derm started me with cream and injections, he loved those injections. Sadly they only briefly help out and help his wallet and hurt mine.

Primary Dr put me on Acitretin and about the same time I went on Keto and have lost 50lbs in a year and 80 lbs total. I did go off the acitretin for a month since I was almost 100% clear was hoping it was the clean diet. But alas it wasn't and went back on the drug. I have almost every side effect they list, and as I was searching the net I see more added that I hadn't put down as the medicine as well. Losing my eyebrows and eyelashes was no big deal. Hair loss also doable, the skin on fire and scratching my face and knees just about unbearable. Would wake up bloody each morning, from scratching. Night blindness and messing with my head I can't bear any longer. Months ago had asked the Dr to change up the med, but she didn't want me to have to start over with all new side effects. I've been on it for over a year and 2 weeks ago took my last dose.

.... Read more here

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Jchio1 wrote

Hi hoping to find likeminded people who understand what it like to suffer with psoriasis and the day to day humdrum that’s involved, so to all hope to chat soon . See more here

Members Treatments, Questions and comments

Mac092 writes his insight on Skilarence

Been almost 2 years since I posted, so apologies for my absence! I've noticed a number of people sharing their experience with Skilarence and I just thought I'd do the same, in case it could help anyone.

I've had guttate psoriasis 8/9 years. Not sure of any of my scores, but my derm considers it severe. I have tried topical treatments with no success as well as light treatment with limited success. Approx 4 years ago I was put on Fumaderm and it was like magic, 100% clear. 2 years ago I did have a mini flare up when my dosage was reduced too low but it corrected itself once I increased my dosage and it stayed steady on 4x120mg a day. . Read more here

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Kat's journey with Laser therapy (XTRAC)

Oddly enough, I only recently heard of lazer therapy. I was a bit surprised when my dermatologist offered it as a bit of a "let's see if this works while we regroup" type of thing. So I am now going for appointments twice per week for XTRAC.

So a little history, I was on three biologics, Stelara, Cosentyx and Taltz. I did not notice any big improvements while on them. There were times when it looked a bit better, but then would go back. So this is where I am currently.

I should tell you that behind my ears and inside ears HAS improved! About 3 weeks ago, the doctor took me off Taltz and started the process of getting the Lazer therapy approved. Immediately after that appointment, I started using Taclonex again as I did not want to go backwards. I had told the doctor a few times that the biologics along WITH the Taclonex would show improvement but she stated that I shouldn't need the Taclonex while on the biologic (as in the biologic should work on it's own) So since I didn't want to skew things by using both, I stopped the Taclonex except for very few times when the scalp was REALLY bothering me. I mention all of this as to be honest, I don't know now if finally the Taltz started to work or if it has been these last few weeks using the Taclonex, but my ear is clear and behind it is only slightly raised and red. I am going with the Taclonex or combination of the two....... Read more

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KatT writes about Psoriasis and Raynauds

Are you experiencing Raynaud`s disease/phenomenon and if so, what did your doctor recommend or prescribe?

What is Raynaud's

Raynaud's disease causes some areas of your body — such as your fingers and toes — to feel numb and cold in response to cold temperatures or stress. In Raynaud's disease, smaller arteries that supply blood to your skin narrow, limiting blood circulation to affected areas.

Symptoms can include:
Cold fingers or toes
Color changes in your skin in response to cold or stress
Numb, prickly feeling or stinging pain upon warming or stress relief

During an attack of Raynaud's, affected areas of your skin usually first turn white. Then, they often turn blue and feel cold and numb. As you warm and circulation improves, the affected areas may turn red, throb, tingle or swell.

Raynaud's most commonly affects your fingers and toes however, it can also affect other areas of your body, such as your nose, lips, ears and even nipples. After warming, it can take 15 minutes for normal blood flow to return to the area. Read more

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Psoriasis News and other related items

Cosentyx could help multiple sclerosis in psoriasis patients

This study suggests Cosentyx (secukinumab) could help multiple sclerosis in patients with psoriasis.

According to the literature, a significant association between multiple sclerosis and psoriasis has been reported. Among the various drugs used to treat psoriasis, tumor necrosis factor (TNF)‐α inhibitors seemed to increase the incidence of demyelinating diseases while IL‐17A inhibitors seemed to reduce the activity of multiple sclerosis.

Objectives:
The aim of this study is to find out if the use of Secukinumab in patients with psoriasis and multiple sclerosis would be both beneficial and safe.

Read more here

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Cosentyx and Liver (study)

This study suggests neutral to favourable long term trends in metabolic and liver parameters under Cosentyx (secukinumab) treatment.

Psoriasis is associated with metabolic, liver and cardiovascular comorbidity. Secukinumab, a fully human monoclonal antibody that selectively neutralizes interleukin‐17A (IL‐17A), has shown significant and sustained efficacy in the treatment of moderate to severe psoriasis.

Objectives:
This was an exploratory post hoc analysis of pooled data from three phase 3 studies in plaque psoriasis patient populations. The objective was to show the course of metabolic and liver parameters under secukinumab, etanercept, or placebo treatment over time. A further objective was to assess the impact of selected comorbidities and metabolic characteristics on high‐sensitivity C‐reactive protein (hs‐CRP), as a surrogate marker of systemic inflammation.

Read more here

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Taltz beats Tremfya in head to head study

Eli Lilly makers of Taltz say they have beaten Tremfya in a head to head study.

Quote:
Eli Lilly today presented detailed data at the 5th Annual Maui Derm NP+PA Fall meeting from the Phase 4 IXORA-R study, the first head-to-head (H2H) study between an IL-17A inhibitor and an IL-23/p19 inhibitor using the Psoriasis Area Severity Index (PASI) 100 score as the primary endpoint. Taltz met the primary endpoint of superiority vs. TREMFYA in the proportion of patients with moderate to severe plaque psoriasis achieving complete skin clearance as measured by PASI 100 at Week 12, as well as key secondary endpoints. The study is ongoing through Week 24.

"Healthcare providers and patients value speed of response when evaluating treatment options for moderate to severe plaque psoriasis," said lead study investigator Andrew Blauvelt, M.D., M.B.A., dermatologist and president of Oregon Medical Research Center in Portland, OR. "The results from the IXORA-R study demonstrate that Taltz was effective in helping more patients achieve completely clear skin by Week 12, with a 50 percent improvement in skin plaques seen as early as Week 1.".......... Read more of the study here

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Rate of Tattoo complications in psoriasis patients low (study)

Quote:
Tattooing is a widespread phenomenon, with an estimated prevalence of 10–30% in Western populations. For psoriasis patients, current recommendations are to avoid having a tattoo if the disease is active and they are receiving immunosuppressive treatments. Although scientific data supporting these recommendations is lacking, dermatologists are often reluctant to advocate tattooing in psoriasis patients.

We aimed to evaluate the frequency of tattoo complications in patients with psoriasis and determine if the occurrence of complications was associated with psoriasis status and treatments received at the time of tattooing.

We performed a multicentre cross‐sectional study. Adults with psoriasis were consecutively included and classified as tattooed or non‐tattooed. Prevalence of complications associated with tattoos was then evaluated according to psoriasis onset and treatments. The study was divided into three parts, in which data were collected through a series of questionnaires filled in by the dermatologist. Complications included pruritus, oedema, allergic reaction/eczema, infection/superinfection, granuloma, lichenification, photosensitivity, Koebner phenomenon and psoriasis flare after tattooing. Diagnosis of complications was made retrospectively.

Read more

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Periodontal therapy improves psoriasis

Quote:
The purpose of this randomized controlled clinical study was to evaluate the effect of non‐surgical mechanical periodontal therapy on the inflammatory status and severity of psoriasis in subjects with psoriasis.

The study population consisted of 92 periodontitis patients with psoriasis vulgaris suffering from an untreated periodontal disease. Two randomized groups were formed from these patients. Immediate periodontal therapy (test group, n = 46) and delayed periodontal therapy (control group, n = 46). Periodontal clinical measures, on salivary interleukin 2, interleukin 6 and secretory immunoglobulin A levels and the Psoriasis Area and Severity Index (PASI) scores were evaluated at baseline and on the 8th week in control and test groups.

Read more

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Cardiovascular events in patients with psoriasis (cohort study)

Quote:
The cardiovascular safety profile of biologic therapies used for psoriasis is unclear.

The Objectives:
To compare the risk of major cardiovascular events (CVEs; acute coronary syndrome, unstable angina, myocardial infarction and stroke) in patients with chronic plaque psoriasis treated with adalimumab, etanercept or ustekinumab in a large prospective cohort.

Prospective cohort study examining the comparative risk of major CVEs was conducted using the British Association of Dermatologists Biologics and Immunomodulators Register (BADBIR). The main analysis compared adults with chronic plaque psoriasis receiving ustekinumab with tumour necrosis‐α inhibitors (TNFi: etanercept and adalimumab) while the secondary analyses compared ustekinumab, etanercept, or methotrexate against adalimumab. Hazard ratios (HRs) with 95% confidence intervals (CIs) were calculated using overlap weights by propensity score to balance baseline covariates among comparison groups.

Read more

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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 alan540

Do you have any pets ?

A golden labrador and two cats

What would be your last meal ?

Liver, bacon and onion

How do you relax ?

Swimming and walking

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

Books because they stimulate one's imagination

What did you have for breakfast today ?

Bacon, eggs, cockles and laverbread

What one piece of advice would you give your younger self ?

Carpe diem

Got any bad habits ?

Smoking. It's something that I'm considering knocking on the head before it knocks me on the head.

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

Retire somewhere sunny

Do you still buy newspapers / magazines ?

I subscribe to a health magazine. It's been many years since I read a newspaper or kept up to date with current affairs.

What is the best part of the day ?

The bit where my eyes are open. Sleeping is pretty good though.

Ever broken any bones ?

Far too many. Thankfully they have a tendency to repair. Breaking bones could also be on my list of bad habits.

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

Fred's Music Column

The 27 club: This is a new one on me, but I found it interesting so thought I would share. I was researching Brian Jones to settle a friendly argument and noticed he died aged 27, I was sure that age rang a bell so I dug a little deeper and there is a "27 Club"

Members of The 27 Club (musicians / artists who died at age 27) lists a few names I'm a fan of including. Robert Johnson, Brian Jones, Alan "Blind Owl" Wilson, Jimi Hendrix, Janis Joplin and Jim Morrison. I also noticed Kurt Cobain and Amy Winehouse are on the list, I'm not a big fan of their music but do class them as good artists.

Wikipedia lists 73 artists in the 27 club which has no official status and I would think it is all just coincidence ............................ Unless you know different ?

* Oh and I won my argument, Bryan Jones was the original leader of The Rolling Stones.

**Whilst getting my column together I found out there is also a film about the subject, but I've not seen it.

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Quiz Time: The quiz is still proving a bit difficult so I'm going to tray another remake to see how it goes. 1 point for each one you get right.

True or False ?

Q1: In the film "Yellow Submarine" the spoken parts are not the Beatles
Q2: ABBA asked an insurance company of the same name if they could use the name
Q3: Amy Winehouse's last recording was a duet with Johnny Mathis
Q4: Eddie Van Halen was born on the island of Java in Indonesia
Q5: Pink Floyd's Division Bell album features 2 giant metal heads and Ely Cathedral
Q6: Johnny Cash spent 3 months in prison for assault in 1965
Q7: Billie Holiday was arrested and handcuffed on her death bed
Q8: Val Doonican got a gift of watercolour lessons for his 70th birthday
Q9: In 2010 five differently dressed wax figures of Lady Gaga were installed at Madame Tussauds around the world
Q10: The band "boygenius" was formed by 3 female artists in 2018

Answers
A1: TRUE: The cartoon Beatles voices are by John Clive (John), Geoffrey Hughes (Paul), Peter Batten (George), Paul Angelis (Ringo).
A2: FALSE: It was a fish canning company. They said "It's ok as long as you don't make us feel ashamed for what you're doing"
A3: FALSE: She recorded "Body and Soul" with "Tony Bennett" for his latest album, Duets II, released on 20 September 2011.
A4: FALSE: He was born in Amsterdam. His mother was born on the island of Java in Indonesia.
A5: TRUE: Each head was as high as a double decker bus and were erected in a filed at Ely Cambs
A6: FALSE Despite landing in jail seven times for misdemeanours, he stayed only one night on each stay.
A7: TRUE: It's such a sad story and the Federal Bureau of Narcotics wouldn't give up trying to get her.
A8: TRUE: He had always doodled, and he got a birthday gift of watercolour lessons from his family. (Bet Jim got that one right)
A9: FALSE: It was actually Eight. London, Berlin, Amsterdam, New York, Hollywood, Las Vegas, Shanghai and Hong Kong.
A10: TRUE: Julien Baker, Phoebe Bridgers, and Lucy Dacus got together to make one EP.

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 Clothing

Raxyl suggested: Fembot In A Wet T-shirt by Frank Zappa
Turnedlight suggested: Bell Bottom Blues by Derek and The Dominos / Eric Clapton
KatT suggested: You Can Leave Your Hat On by Joe Cocker
Caroline suggested: Long cool woman (in a Black Dress) by The Hollies
wooleyb suggested: Hole in my shoe by Traffic
Kat suggested: Short Skirt Weather by Kane Brown
jiml suggested: Wherever I Lay My Hat by Paul Young
D Foster suggested: All Fur Coat And No Knickers by Chumbawamba
JohnB suggested: My Silver Lining by First Aid Kit
Mrs Fred suggested: The Emperor's New Clothes by Sinéad O'Connor
Fred suggested: Changing Room by Eric Bell

Listen on: Deezer | Spotify *Fred's recommendation is not available on Deezer.

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

Autumn Pork Stew

Now that the winter nights are drawing in thoughts turn to nice warming comforting stews and the like. We and by we I mean Mrs John found this recipe and it could become a winter staple a nice satisfying Pork Stew.

Autumn Pork Stew
This will / should feed four, but it does freeze well so why not batch cook it, double the quantities freeze it for quick meals after work.

So start off browning around 600g of Pork medallions over a medium heat for a couple of minutes a side in a little oil in a large pan. Remove when ready and put somewhere warm while you cook the rest of the stuff. Throw a finely sliced onion and a couple of sticks of celery that have been finely diced and three good sized cloves of garlic into the pan you have just cooked your pork in and cook for 8 or so minutes until its softened. Chances are the pork will have swallowed up the oil and left a nice flavour crust in the pan and by now your onions and celery will want to start sticking to this mess so just add a splash of water and carry on cooking, but keep it moving. Now you want to add a teaspoon of fennel seeds and a tablespoon of paprika mix it all in to the veg and cook for a further minute before chucking in a tin of butter beans that have been drained and rinsed, bringing it all together with 175ml of chicken stock.

(So has anyone ever struggled to open your stock cube and crumble it into your jug before adding the water? Well struggle no more. Just take your stock cube, and gently massage between your thumb and forefinger for a short wile and lo and behold if you are careful and your cubes haven't been sat festering for an eternity you will now have a nice blister of perfectly crumbled stock to tear open and tip into your jug.)

Give it all a good stir, bring to the boil drop the heat to a nice simmer, return the pork with a couple of sprigs of rosemary and a dozen cherry tomatoes. Cover and simmer for around 10 minutes. Then remove the lid and continue for 5 minutes more until the pork is nice and tender and the sauce has thickened.

And so to serve.
We served ours with some home grown Anya Pink Fir Apple spuds and some plain boiled cabbage (plenty of butter and ground black pepper stirred into the drained cabbage obviously). You might also want a good slab of crusty bread to help mop up the sauce.

To accompany why not try a nice dark Italian beer like Peroni Gran Riserva Rossa – only lightly chilled mind.

Next month something a little different.

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

* 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!