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Here we are and another month gone it doesn't seem five minutes since the last newsletter went out, Here's your copy of the September Issue. It's been a busy month on the health boards and we have seen a few members returning to update their threads after a period away, it's heartwarming to know that the work put into the club behind the scenes is appreciated and that old members still return
If you haven't been on for a while we would love to see you logged in and perhaps hear how your treatment is working and for how long, or if you have had to change treatments we would love to know If you would like to submit an article for the next newsletter, about anything you think might be of interest perhaps a holiday or a hobby you have then I would be pleased to consider it for publication .. Contact me or if you prefer 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.
Please look at these introductions and come and welcome the new members that have taken the trouble to write an introduction. C-DOGG wrote ...Newbie with scales all over my body .... hi all 36 year old Australian here. Just discovered enstillar foam for quite severe psoriasis and it works kind of. Still feel itchy parts on my body. Just seen my derm and they’ve issued me with acetretin. I’ve just stared on 25mg and here’s goes!! Hopefully this gets rid of it completely
Read more here Newbie Haleyalexxis wrote Hi! My name is Haley, I’m 20 years old. I’ve suffered from “dry skin” all my life. When I was younger they said it was eczema. Doctors always said I would grow out of it. I think I was about 13 when they started calling it psoriasis. My psoriasis covers more than 90% of my body. Its definitely gotten worse with age. Ive used topical steroids religiously for most of my life. I have a bunch of other medical stuff going on as well. I have seen a million and one specialists, no one could ever really help me. A few of my specialists tried getting me in to National Institute of Heath and after 3 long years I was finally accepted and had my first visit in February of 2017. I thought that was going to by big break. Finally get a cure and be able to live a normal life. Well, turns out the NIH is stumped too. Patiently waiting, still. Come and Read more here
eeloe from Ireland is starting Stelara soon .... Hey everyone.
33 year old male, have had psoriasis for the last 15+ years, just a patch on each elbow and calf, until this year, when I got my first flare....my legs are currently covered, my arms are very sore, getting patches on my scalp and my back and my torso.
Currently healing a broken toe, and have to have a TB test, and once this is out of the way i'll be starting Stelara.
Looking forward to really getting this under control.
Read more here Imapsomum writes ..... I'm new to this forum...... I do not have psoriasis but my 13 year old son does. I am quite active on a couple other sites and am always looking for and researching best treatments for him. I would like to treat him as holistically as possible. We use clobetosol but of course a soon as we stop his P flares up and I do not want him to spend his life on steroids not do I want to compromise his immune system more than it already is with Biologics. That said his mental health is of utmost importance so if we need to do those things we will. He does have small amounts of P all over most of his body.
Can you advise ..Click Here
Members Treatments, Questions and comments . click on the links and see if you can help.
KeithDawson wrote ....Hello All
I am on my fourth week of methotrexate treatment. 10 mg on Wednesdays and 10 mg folic acid on Fridays.
First, to this date no side effects.
During the first two weeks the itching was as severe as ever, however I experience longer intervals with calmer skin.
The Tuesday, at the end of the second week was a nightmare. I had severe itching the whole night.
The third week: Wonderful - Since that Wednesday afternoon and for the following the itching is not so severe and at intervals none at all.
to read the rest
Click Here Brown eyed girl has exciting news for us .... Just went to my dermatologist yesterday and have been using Cosentyx since May 7th....she told the nurse that my psoriasis is at 0% coverage.....and it's true! She gave my scalp a thorough check (that's my most stubborn place for psoriasis) and checked me all over and I'm clear. So happy! THEN she said something I didn't think I would ever hear, "If you are still clear at your next 6 month appointment, I will only need to see you once a year." What?! Only once a year?! I couldn't believe what I was hearing. She also recommended that I talk with my rheumatologist to see about cutting back on methotrexate - psoriatic arthritis has been a little slower to respond to Cosentyx than my skin. Can you believe that though? 0% coverage on my skin. I am so happy with my results. Slight stomach issues have not been too bad and have been the only side effect I've experienced. Definitely manageable. I want this to encourage others. Stick with it, there is a treatment out there that will help. It might not be Cosentyx, but keep working with your doctors and experimenting with your diet
Read more here ..Click Here omgmoe says Hi all ....Anyone tried different IL-17 biological
Hi All,
I am on cosentyx at the moment and while it is working amazingly for the psoriasis, it really isnt doing well with the PSA.
Taltz is an option that is on the table however it is also a IL-17 drug.
Was wondering if it would be worth a shot to try it considering they are both IL17 and whether it will have the same effect as the cosentyx.
Has anyone been on both cosentyx and Taltz or any other IL-17?!
My other option is Stelara or Xeljanz.
I don't know what to do and this PSA is killing me at the moment
Mohamad
Read more Here Susieroussel1 writes ....I’ve been on Taltz for a year and a half........no psoriasis! This is great except in the last 5 weeks I have developed a sore throat, sore ear, coughing, stuffed up and spitting up phleghm. I feel great except this is annoying. Just wondering if anyone if anyone else has had this happen. I’ve had strep tests and blood tests and everything came back negative. Help, I need reassurance! Thanks so much
Can you advise ..Click Here
Psoriasis News and other related items .
This study looked at the relationship of galectin‐3 in psoriasis patients
The Background:
Psoriasis has been shown to increase cardiovascular risk, and a contributor to this might be enhanced myocardial fibrosis promoted by the disease‐associated proinflammatory milieu. The Objective:
We sought to investigate the relationship of galectin‐3 (Gal‐3) – a recognized mediator of fibrosis with inflammatory activation and left ventricular (LV) systolic and diastolic function in patients with psoriasis. The Methods:
We enrolled 102 psoriatic patients (mean age: 52.5±12.6 years). Sixty‐five age‐ and sex‐matched healthy subjects served as controls. Echocardiographic assessment of myocardial function included estimation of LV longitudinal systolic deformation (GLS), and diastolic indices: tissue e’ velocity and E/e’ ratio. Laboratory measurements encompassed blood Gal‐3, creatinine, glucose, insulin, CRP and erythrocyte sedimentation rate (ESR)..... read the full story
Here NICE approves Taltz for Psoriatic Arthritis .... NICE The National Institute for Health and Care Excellence for the UK has approved Taltz (Ixekizumab) for the treatment of psoriatic arthritis.
Quote:
Ixekizumab alone, or with methotrexate, is recommended as an option for treating active psoriatic arthritis in adults, only if:
it is used as described in NICE's technology appraisal guidance on etanercept, infliximab and adalimumab for the treatment of psoriatic arthritis or the person has had a tumour necrosis factor (TNF)-alpha inhibitor but their disease has not responded within the first 12 weeks or has stopped responding after the first 12 weeks or TNF-alpha inhibitors are contraindicated but would otherwise be considered (as described in NICE's technology appraisal guidance on etanercept, infliximab and adalimumab for the treatment of psoriatic arthritis).
Ixekizumab is only recommended if the company provides it according to the commercial arrangement.
Assess the response to ixekizumab after 16 weeks of treatment. Only continue treatment if there is clear evidence of response, defined as an improvement in at least 2 of the 4 Psoriatic Arthritis Response Criteria (PsARC), 1 of which must be joint tenderness or swelling score, with no worsening in any of the 4 criteria. People whose disease has a Psoriasis Area and Severity Index (PASI) 75 response but whose PsARC response does not justify continuing treatment should be assessed by a dermatologist, to determine whether continuing treatment is appropriate based on skin response as described in NICE's technology appraisal guidance on etanercept, infliximab and adalimumab for the treatment of psoriatic arthritis, recommendation. To read the rest of the report
Click Here Nuevolution announce the identity of it cytokine x programme
Nuevolution announced the identity of its “Cytokine X” program being a lead discovery program targeting inhibition of Interleukin IL-17A using small molecules. Nuevolution’s small molecules may offer access to both topical (e.g. cream based) treatment as well as safe tablet-based treatment, whereas currently marketed IL-17A inhibitors are injectable and high-cost antibodies that come with potential adverse reactions from the treatment. The company also announced that it will initiate promotion for potential partnership opportunities on this exciting program targeting multiple inflammatory diseases.
IL-17A is the founding signalling cytokine produced from TH17 cells of the immune system. This cytokine is responsible for driving multiple inflammatory diseases such as psoriasis, psoriatic arthritis, ankylosing spondylitis and is considered a major contributing factor in diseases such as inflammatory bowel disease and multiple sclerosis. The IL-17A target has presented itself as a very challenging protein to inhibit (block) with small molecules, and presently all available inhibitors are therefore based on injectable antibodies.... read the full story
Here Sienna announces results from first-in-human study of SNA-125 in psoriasis ....
Sienna Biopharmaceuticals a clinical-stage medical dermatology and aesthetics company, today announced results from a first-in-human study of its investigational new chemical entity SNA-125, a JAK3/TrkA inhibitor being evaluated as a first-in-class topically administered medication to treat mild-to-moderate psoriasis.
SNA-125 was developed using Sienna’s Topical by Design™ platform, which yields new chemical entities (NCEs) designed to deliver high local drug concentration in the target tissue with minimal to no systemic exposure for patients. SNA-125 selectively inhibits Janus kinase 3 (JAK3) and tropomyosin receptor kinase A (TrkA). JAK3 inhibition blocks the signaling of key cytokines, resulting in reduced severity of certain autoimmune and inflammatory diseases such as psoriasis. TrkA is the high-affinity receptor for nerve growth factor (NGF), a known mediator of neurogenic inflammation associated with psoriasis, as well as pruritus (itch).
This exploratory Phase 1/2, double-blind, within-subject vehicle-controlled study in 15 subjects, using a psoriasis microplaque model, was designed to measure an effect on inflammatory skin infiltrate thickness, local tolerability, and histology and biomarkers with two doses of SNA-125 prototype gel applied once daily for 10 days.
Read more Here
Want More
A lot of members only threads and journals have been updated, come and see if there are more replies on your thread ... why not log-in and have a quick look around.
*There are other members only boards. But as it depends on how many posts you have made and what group you are in I won't add them here. The only way to see them is to make more posts.
Jim's Q and A's
Grizzly has been kind enough to answer a few questions for the newsletter so here we go
. 1. You have said in posts and indeed posted some great pictures of your model making and I notice you also say it's a job so do you make models for others as well as yourself ?
Yes, I do make things for others and myself too.
2 what sparked your interest in model trains ?
My late Grandad had a huge layout when I was a nipper and that sparked an interest back then, but as I grew older and being in the Army then the RAF I lost interest until the NHS tried to correct a back injury I sustained in Northern Ireland when I was attacked in the short strand area of Belfast. The NHS blundered and messed up my spine and its left me in crippling agony since.
So, I lost my full time job from the post office and had to find something to do to keep my last remaining brain cell alive, so, I took up modelling etc.
3 Do you belong to a modellers club or society ?
I use too but it was to far too travel and my spine just got worst with the pain.
4 do you have a large Train layout at home
No, not yet but I'm working on one
5 do you like to travel and if so what’s your favourite destination ?
5. My days of traveling are becoming too much, my spine puts paid to holidays but many years ago I enjoyed traveling around europe, alps etc.
.
6 what do you love most about Exmoor ?
6. What I love about Exmoor is the peace and quiet, the wild animals and the endless birdlife, I've never seen so much of it all in all my life, I would highly recommend it to anyone for living, holiday etc, it's fantastic...........except for the coffin dodgers whom cannot for the life of them get out of first gear when driving ! lol
7 what other hobbies do you have?
I enjoy photography, even if I'm crap at it lol, and astronomy because there's not much artificial light and so I can pop onto exmoor and see tens of billions of stars, whirlpool galaxies etc etc with my telescope
8. Do you have pets if so what are they ?
I've always loved animals since I can remember and I've had dogs in the past but now I can't have a dog because I can't walk it and that's not fair on the dog, so, I have three pussies whom have their own character and are lovable furry children
9. if you could live anywhere on the planet where would you choose and why ?
This one is difficult.........but it would be two places, Canada, in the middle of no-where because I hate towns and cities and the other would be New Zealand (southern island) because again, peace and quiet and remoteness appeal to me greatly.
Thanks for your answers Grizzly some are very thought provoking but I appreciate your honesty, if anyone has more questions for Grizzly they might like to ask, I'm sure he would be pleased to answer them on the forum
.
Fred's Music Column.
What you listening to: We have a thread in the members only section titled "What you listening to" it's a thread where our members will post something they are listening to. (bet you didn't see that coming) anyway it's mostly me posting stuff but sometimes others post stuff too. So I thought this month I would share a few. You get a bonus point if you spot the one I posted.
My Chemical Romance - Welcome to the black parade | Paul Anka and Peter Cereta - Hold Me 'Til The Morning Comes | Kirsty maccoll - Angel floating round this house | Rondo Veniziano - Fantasia Classica | War of the worlds with Richard Burton narrating | Delta Getaway - Eric Bibb | Comme ci, comme ca - Zaz | Lankum - The Granite Gaze | Abba - Voulez-vous. *If you're a member feel free to add your recommendation Here
Some say the quiz was too difficult last month as there was no Des O'Connor or Legion of the Damned.
Des or Damned: Who recorded the following tracks. Des or The Damned ?
#1 Death's Head March.
#2 Disturbing the Dead.
#3 Dick-a-Dum-Dum.
#4 Chronic Infection.
#5 One, Two, Three O'Leary.
#6 The Tip of My Fingers.
#1 Des O'Conner.
#2 Des O'Conner.
#3 Legion of the Damned.
#4 Des O'Conner.
#5 Legion of the Damned.
#6 Legion of the Damned.
Congratulations if you got them all right they all sound the same to me.
The Compact Cassette:
Did you know around 55 years ago this month we were all talking about the Compact Cassette ? Philips first invented the compact cassette and introduced it to the world on 30 August 1963 at the Berlin Radio Show, from there on we no longer needed a reel to reel and it was possible to have a miniature version we could carry around with us.
The Compact Cassette which was to end up being know as just a Cassette or Cassette Tape was a huge leap in recorded music. We could buy pre recorded tapes or blank ones and record our own music on to it. They had a simple way of stopping overwriting by removing a little piece of plastic on the top corner, and if you ever wanted to record over it again all you needed was a piece of sellotape.
The first players of the new tape were a bit large but portable, they did however cost a fortune in batteries to run and most of the early ones would often spit out your tape half way through (car ones would often spit out the tape if you hit a bump in the road) but all was not lost as a Biro was almost designed to be the perfect rewinder of your tape.
I bet there are many of you out there had a go at recording your own tape. My favourite was to give every family member a makeshift instrument at xmas and try to create a band. We were always rubbish and Mum wasn't too happy seeing her pots and pans getting knocked about, but Dad was reasonably good at the spoons. Another thing I liked doing was to record Radio Caroline through the little microphone that came with your machine, if I remember correctly it was put the mic next to the speaker of my radio and push "Start and Record" and sit there very very quiet whilst the show was going on.
Oh how I wish I had kept my Tapes. Over the years they are now all gone and I have none left. I do however still have a double tape deck somewhere and a Walkman so if anyone can find my old tapes please let me know.
Random Track: Frankie Miller - Let The Candlelight Shine.
See you next month.
Recipe Spot
Turkey with Vermouth and Tarragon sauce
Well first off apologies for there not being a recipe from me for your delectation last month Thanks to Craig for supplying one of his . But somebody stole a month from me somewhere along the line. Anyways this is what was planned for last month. As we are half way through the year and I just know you are all missing your Turkey I thought this recipe was the most apt. This is one Mrs John makes at least once a month and its quite delish.
So folks raid your pantries for the following;
A couple of nice Turkey breast steaks,
4 decent sized shallots, sliced really thinly
60ml Vermouth, (you could use a dry white wine, but it really wouldn’t taste right)
225ml of chicken stock
2 teaspoons of fresh tarragon – it needs to be fresh, there just isnt the flavour or aroma in dried
2 tablespoons of crème fraiche.
So lets get our hands dirty
Get a large frying pan hot add your favourite oil, we use Rapeseed because it copes well with heat and cook your steaks until they are nicely brown. Remove the turkey from the pan and keep warm. Reduce the heat a little and throw in your shallots and vermouth. Allow the alcohol to boil off then slosh in your stock. Bring to a simmer and return your turkey and the tarragon and cook for 20 minutes or so. While that is glopping away, trim a big handful of French beans and a good serving o new potatoes (Jerseys are my favourite) teaching them to swim in some boiling water until tender.
After your 20 minutes is up, check the turkey is fully cooked and remove to your plate and keep warm while you reduce the sauce a bit. Remove the sauce from the heat and sir in the crème fraiche check to see if it needs any salt before spooning over the turkey. Serve with the beans and potatoes. Add a few sprigs of the Tarragon as a garnish.
So to accompany? I think a nicely chilled Soave would do nicely, but you could even get away with a Prosecco.
Enjoy
Johnb
To read more recipes or to add your own
Click here
Members Photos
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.
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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!
Adding pictures to you posts
I thought I would give a bit of prominence to posting photos this month as I often see members struggling to get the idea that you can't just post a picture directly from your computer but it has to be hosted elsewhere . Here we will show you how to do it with step by step guides using either Flickr or imgur as the hosting sites
Fred has a general tutorial for those of you that use a laptop or desktop and he chooses Imgur to host his pictures and you can see how to get an account with imgur Here
Caroline has kindly done one showing how to use Flickr to host your pictures from laptop or tablet
You can see that one Here
jiml (me) has done a picture step by step tutorial on how using Imgur as the host you can post from you mobile phones or tablets (Apple or android) you can see how by clicking Here
Sneaky peek
We have an active Off Topic Board and we thought we would share some sneaky peeks with our lurkers.
Things that are gone Things like The last biscuit in the tin . Why not add to the list
.. here Grizzly's work and hobby thread Why not pop in and see the latest work Grizzly Bear has been doing in his modelling thread ( No not that kind if modelling ) log in to see HERE This thread is just called "Cute" Why not pop in and browse the cute images in this thread
... Come on in
Poetry section
Turnedlights poetry corner ..
"This month Turnedlight has given us a limerick ......
The Owl
Owl thought he would sing a new tune
And brought out a shiny bassoon
Dad squawked, gave a lurch
And he fell off his perch
Said owl ‘no, you came in too soon’
Each month I will add a tip or a helpful link to assist you with your posts or your visit to a dermatology clinic .
Dermatology Life Quality Index
You might find this thread useful to arm yourself with if you are visiting a dermatologist and you feel you are not getting the right care from them ...Have a look at this and if you aren't being listened to to fill it in and take it with you
User Control Panel
Should you get stuck or need help just ask a member of the forum team who are always pleased to offer assistance
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Psoriasis Cure!
Stop Press
Angie returned to tell of her continued success on Stelara and wrote Hi all
Hope you are all well.
Time certainly flies the older I get. Back for an update.
Not been here for a while as not much to add to previous
updates. This week marked my 3 years on Stelera,
(How quick has that been!). Still working well, doesn’t
clear from elbows or hip at all now but I can more than
live with that ( probably should use my Enstillar more regularly).
I am convinced it has an effect on pigmentation, as still left
with marks every time I burn myself ( oven, iron etc, always
in a hurry NoNo ) skin on face an absolute mess with
pigmentation , just as well Double Wear make-up is out there
Read more HERE Artemie tells how she's almost clear on Stelara And wrote .....Hi all,
quick update on the Stelara, I'm almost clear!
Sadly in 2018 I've already had a full on flu 4 times plus 1 cold, or.... 3x the flu, one hell of a throat infection that kept me home from work and 1 minor cold.
My derm says it's up to me to continue or not. I will tho; just had a shot on the 30th of july. But feeling sick and low energy often isn't.. perfect. Wearing dresses is great!
So, I'm doing a immune boosting regime:
see full update here
What you listening to: We have a thread in the members only section titled "What you listening to" it's a thread where our members will post something they are listening to. (bet you didn't see that coming) anyway it's mostly me posting stuff but sometimes others post stuff too. So I thought this month I would share a few. You get a bonus point if you spot the one I posted.
