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Welcome to your June newsletter this month is Psoriasis clubs 9th birthday and amazingly Fred has managed to keep it going as a friendly place where everyone is made to feel welcome and safe from spammers and advertising. Fred has funded it throughout the entire 9 years without asking for contributions from its over 1000 members. He has also committed to keep it running at least until 2021 and of course the decision whether to carry on will depend on the forum staying active and used by members.. so this is an ideal time to log in and help keep the site active and to wish the club a happy 9th birthday Read more Here
Please log 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 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.
AutumnLeaf's introduction .... Hi I have just recently in the last week been diagnosed
with psoriasis and found this group while searching for a community that I could feel safe discussing this condition with. I am 30, female.
I mainly have scalp psoriasis but also have it on other parts of my body. Before my dermatologist's appointment I had no idea what this was and thought it was just a rash or fungal infection! I was so embarrassed because my scalp started shedding and I am a student and an intern studying to be a teacher and it just has been hammered into me that I need to professional all the time in everything! I am a bit relieved to know the cause because I was trying to treat it on my own and nothing was working!! But I am still a little concerned about scalp shedding in my chosen profession. I am worried my supervisor or a principal or mentor will think it is unprofessional and I have been contemplating telling my professors about my condition before someone says something, but it is a bit private and I'm not sure I should say anything. I have mostly been hiding it now by always braiding my hair.
Read the rest here SnarkyTexan is a long time sufferer and wrote Hi all
I have joined this board in hopes of finding some info on the treatments for psoriasis.
I first experienced psoriasis when I was a teen. At the time, I didn't realize what it was. I just itched a lot on my arms and legs and didn't know why. After a change in detergents, it went away. I've had various short episodes since then. Most of the time my flare-ups are triggered by an allergic reaction to detergents or fabric softeners. That alone has limited me to using only All Free & Clear to wash my clothes. I have a reaction to ALL box soaps and anything scented. Recently, All released their new Free & Clear softener and I was hoping I could use that since I pretty much live off the detergent. That was a big fat NOPE. It resulted in a flare-up that I'm currently dealing with.
How do I know it was psoriasis you ask? Besides a Dr's diagnosis, my mother is a lifetime psoriasis sufferer as well. We have worked through this fight together to find out what works and what doesn't. I also have an aunt and an uncle on my dad's side who has psoriasis but I don't interact with them very much.
I have had inverse psoriasis most of my life. I live in Texas and the heat (sweating) makes it worse. Sweating, in general, makes it worse. It makes me miserable, unhappy, and in a lot of pain......... Read more here Bubbles has joined and says Hi
I stumbled across this wonderful forum searching for answers, yet again, sigh!!
2019 marks my 30th year as a psoriasis sufferer, so ill try give a bit of background on what i have tried over all those years
tar baths/cortisone creams, ..
Naturopath - natural concoctions and acupuncture
Chinese herbalist - yes i drank "soup" made from boiled beetles, among other things
PUVA - several times, PUVB
Methotrexate twice - 1st time cleared ok, 2nd time no good and got very sick even with folic acid supplements
Cyclosporin
Stelara since 2010 (last dose 25/3/19) and 1 week ago started my first loading dose of Cosentyx
Read the full intro Here
Members Treatments, Questions and comments . click on the links and see if you can help.
D Foster asks about Stelara and migraines
Had another migraine and I have only just injected on Monday plus I have got several areas of P including what looks like sunburn but there has been a distinct lack of sun recently and I have also several other patches .
I am seeing the dermatologist next week and I think that it's time for a change , must have been on Stelara around six years now and it's been a life changer.
Read more Here SnarkyTexan wrote aboutMethotrexate side effects
A real quick rundown of my dose of Methotrexate. Also, note that my dermatologist is a man. But I interact more with the resident under him, who is a woman. So if I get gender-confused, that's why haha
My dermatologist had me start a daily regimen of folic acid 2 days before she had me start the MTX (that I skip on the days I take MTX). I was taking the MTX on Tuesday's. But because of the required labs and the clashing with my job, I had to move the dose to Wednesday.
1. I started a 2-pill dose on April 23.
The first labs came back normal. I discovered I am anemic based on my lab results. I didn't know but had an idea that I am.
I also had serious heartburn. There was also occasional pressure under my sternum like gallstones. I had experienced gallstones 15 years ago after having my son. Never had that issue resolved but the pain stopped after a couple of years. I emailed my dermatologist about this symptom and she says it is not related to the MTX and to contact my primary.
No change in psoriasis
Read more here Fred asksanyone else on Cosentyx not getting clear
I was just reading Kat's post Cosentyx - Kat's journey and it got me thinking.
Are there any of our members using Cosentyx that got completely clear and staying that way ?
For me it started off well, but now I find I still get the occasional flare up and have to resort to using some Diprosone with it. This usually happens if I get wound up about something, but I have also noticed it happens around week three.
What about you, anyone staying clear with just Cosentyx ?
Read more Here Kevinto asks about arthritis
Hi All, I just had my first real experience with arthritis this morning (aside from the ache in my hips). I awoke with my knuckle swollen, hand disfigured and experiencing dull pain. Any remedy aside from the Cosentyx that I am currently taking?
Read more Here
Psoriasis News and other related items .
Cosentyx over 90kg patients could benefit from 2 weeks between shots
This study suggest that patients over 90 kg could benefit from moving to a two week between shots regime with Cosentyx (secukinumab).
The objective was..
To assess the efficacy and safety of different maintenance‐dosing regimens of secukinumab 300 mg based on PASI response at Week 24 in patients with moderate to severe plaque psoriasis.
The Methods used
OPTIMISE was a randomised, open‐label, rater‐blinded Phase 3b study. Subjects (n=1,647) received secukinumab 300 mg at baseline, Weeks 1, 2, 3, and 4, and every 4 weeks (q4w) to Week 24. At Week 24, PASI 90 responders (n=1306) were randomised to secukinumab 300 mg q4w (n=644) or every 6 weeks (q6w, n=662) regimen to Week 52; PASI ≥75 to <90 responders (n= 206) were randomised to secukinumab 300 mg q4w (n=114) or every 2 weeks (q2w, n=92) regimen to Week 52.
Read full article Here Claudin-3 a bio marker for gut permeability increases in psoriasis
Gut dysbiosis and increased intestinal permeability play a significant role in the pathogenesis of psoriasis and its comorbidities. Claudin‐3 is a key component of tight junctions, which may serve as marker of gut barrier integrity.
The aim of the study was to investigate circulating plasma claudin‐3 in patients with psoriasis and to evaluate clinical and metabolic factors, which determine its concentration.
Methods:
This cross‐sectional study included 60 patients with psoriasis (39 men and 21 women, mean age: 45.6±12.1 years) and 30 healthy controls (18 men and 12 women, mean age: 46.3±15.5 years) age, sex and body mass index‐matched. Plasma claudin‐3 concentration was measured using an enzyme‐linked immunosorbent assay.
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.
Off Topic Board. Members Photo's The Ask Threads.
*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.
Fred's Music Column.
Rory Gallagher: I'm not a big fan of new releases coming out from artists that are no longer with us, but I am a very big fan of Rory Gallagher and on the 31st of May an album was released. Simply titled "Blues" it covers Rory's love of the blues as seen through his solo career dating from 1971 to 1994 with the help along the way via some greats such as Muddy Waters, Albert King, Jack Bruce, Lonnie Donegan and Chris Barbe.
At the time of writing this I have not heard it yet and I can't wait to give it a spin. Formats include a 15 track 1CD / 2LP version, limited edition blue vinyl 2LP and a deluxe 36 track 3CD version. I'm not sure yet if it will be available for on-line listening on the release date but his full back catalogue is available on-line for your enjoyment at any time.
If you're not a fan of his work then I'm sorry this mention in my column isn't to your Taste(see what I did there ?) but if you are a fan I would like to know what you thought about it and was it right to release it ? Sorry it's Blues, but it's from one of the best blues artists ever. Anyway I know I will enjoy it.
Quiz Time: Can you find a link ? (Tip: It will help to listen if you get stuck)
Q1: Bloodline by Ariana Grande.
Q2: Goodbye Blue Sky by Pink Floyd.
Q3: The Fog by Kate Bush.
Q4: Code Red by Monica
Q5: Tigerlily by La Roux.
They all have a spoken part by a member of the artists family A1: The first voice you hear is Marjorie Grande, the singer's grandmother.
A2: The first voice you hear is Harry Water, Roger Waters son.
A3: The first voice you hear is Doctor Bush, the singers physician father.
A4: The child's voice you hear at the start is Laiyah, the singers daughter.
A5: The voice you hear at around 2 mins in is Kit Jackson, the singers father.
Members recommendations: Each month I ask our members to come up with a music recommendation on a theme.
This month it's "Drinks"
Kat suggested: Tequila Makes Her Clothes Fall Off by Joe Nichols Raxyl suggested: Escape by Rupert Holmes wooleyb suggested: Glass of Champagne by Sailor Grizzly Bear suggested: Right Said Fred by Bernard Cribbins Caroline suggested: Liquid Lunch by Caro Emerald D Foster suggested: Little Brown Jug by Glenn Miller JohnB suggested: Water Bearer by Sally Oldfield jiml suggested: Have a drink on me by AC/DC Mrs Fred suggested: Lilac Wine by Elkie Brooks Fred suggested: Milk And Alcohol by Dr Feelgood
*Watch out for my new thread each month where I ask for your recommendations.
I 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.
Recipe Spot
Satay Bones
Yeaaaah!! Its Barbecue time The sun is blazing clear blue sky . . . . . .
Well I can dream please bear in mind I wrote this way back in April.
So for your delectation this month I though I would bring your attention to Satay Bones or Chicken Drumsticks done with a Peanut sauce.
So for this delumptious mouthful first off get yourself a load of chicken drumsticks and put several slashes in each drummer with a sharp knife. Throw them all in a zip lock bag and marinate for a couple of hours with the following concoction -
1 tablespoon of ground Almond
1 tablespoon of ground ginger
1 teaspoon of coriander
1 teaspoon of turmeric
300ml (½ pint) coconut milk
teaspoon Demerara sugar
and a good grind of black pepper
All mixed together before throwing in with the chicken.
Don’t forget to give your bones a good massage every so often.
Right while that lot is festering assemble your sauce with the following
4 tablespoons of peanut butter (your choice smooth or crunchy, I prefer crunchy)
½ teaspoon of chilli powder
1teaspoon lemon rind grated
1½ teaspoons soft brown sugar
225ml (8fl oz) water
juice of ½ a lime
Throw all this into a pan except the lime juice and simmer it for about 20 minutes. Decant into two bowls and keep warm.
Shake off excess marinade from your bones and BBQ over a medium until the bones are cooked. Dont forget you cant do chicken medium rare.
From one of the bowls of sauce baste your bones regularly.
Serve your bones nicely smothered with the warm satay sauce from the other (as yet unused) bowl.
Right I’m starving!
Ooops to serve. Seriously? BBQ? Sorry there is only one choice. A good cool beer. Preferable a nice hoppy IPA.
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. This month the theme is architecture
If you want to follow us on Twitter you can find us here: @Psoriasisclub
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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!
In This Issue
The Ask Threads
Some of our members have an Ask Thread. These are threads where other members can ask the thread starter a question about themselves, it's a good way of getting to know some of our members and can also turn out some interesting traits.
Members can find the all the current Ask Threads HERE
Top Tips for newly diagnosed psoriasis sufferers
If you have recently been diagnosed with Psoriasis or even if you have suffered for years, members have been posting things they feel may help you cope, you can follow the link below to see more tips that members have posted
Number 1 Appointment support Take someone to your Dermatologist appointment. They seem to treat you a little differently and having another person allows two sides of the same point to be made. There is also the benefit of extra recall of the consultation.
Number 2 Applying Topical creams
Always apply any topical in the direction of how your hair lies (the grain) it helps avoid more irritation to the skin. Also apply at least half an hour after moisturising for the best absorption.
To see the full list of top tips Or if you have one to share
Click Here
Sneaky peek
We have an active Off Topic Board and we thought we would share some sneaky peeks with our readers .
Are you a formula one motor racing fan if so come and read this thread and add your thoughts to the thread .. Here A popular thread with members is the "Change One" thread
In this thread you go to the last post and see the word that's bold and change one letter to make a new word, if you can fit it in a sentence that's a bonus
......Have a look or join in Click Here
Poetry section
Turnedlights poetry corner ..
Visit .....
The seasons turn
And time slips on
But you do not
You are still
A fixed point
A star in the dark
I open the book in my mind
So many moments
Frozen and beautiful
We are linear
But our minds are free
We can visit other times
With just a small thought
A shut eye
We can live
And relive
Love
And relove
We said goodbye
But in my mind
We say hello
Author Turnedlight
Sunflower Competition 2019
This is the third year we have run this competition and it's proving popular again this year. Several of you have started planting already
If you haven't already planted yours, why not join in this international piece of fun ....there are no rules
Anything you grow and can show will be acceptable and like last year everyone that took part was a winner in one of the categories ,
So add comments and pictures on this thread please
Sunflower Competition Here
THOUGHT OF THE DAY
Always remember that you are absolutely unique. Just like everyone else
how to put an internal link to other posts or threads, this is handy if you want to guide others to an earlier post or thread click here Using codes in your post
BBCodes are usually enclosed between brackets. This is an open bracket [] and this is a closed bracket [/] the code itself goes inside the bracket, and the text goes between the open and closed brackets
Take a look at this thread to see how adding codes could enhance your posts
........See here
Should you get stuck or need help just ask a member of the forum team who are always pleased to offer assistance
Psoriasis Club is self funded, we don't rely on sponsorship or donations. We offer a safe
friendly forum and are proactive against spammers, trolls, and cyberbullying. Join us here!
No Advertising.
No Corprate Sponsors.
No Requests for Donations.
No Cyber-Bullying.
No Scams or Cures.
No Recruitment Posts.
No promotions or offers.
No Trolls.
No Spam.
Just a small bunch of friendly people with psoriasis sharing information and support.
Rory Gallagher: I'm not a big fan of new releases coming out from artists that are no longer with us, but I am a very big fan of Rory Gallagher and on the 31st of May an album was released. Simply titled "Blues" it covers Rory's love of the blues as seen through his solo career dating from 1971 to 1994 with the help along the way via some greats such as Muddy Waters, Albert King, Jack Bruce, Lonnie Donegan and Chris Barbe.
