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Hi and welcome to your May Newsletter it's been busy again this month with a lot of activity with some great posts in the health boards and a lot of new posts in the off topic section..It's been a year now that we have had this format in the newsletter and I often wonder what you think of it, if you think it's to long, or the format needs adjusting I welcome any feedback and only want to put in here things you as members want to see .. I look forward to seeing some of you on the boards either updating your threads or saying hi to new members or even pop in for a chat here Chatting thread
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Note: Subscribed members get an early view of the newsletter.
General Data Protection Regulation
A new rule is on the way called the General Data Protection Regulation (GDPR) and just like the Cookie Law, I don't have a clue. So I'm going to post something here and take it as read that you are all happy. Q: Why am I posting it here and not sending you all an Email ? A: I can't send you an Email about it unless you subscribe (that's another rule) Q: What is it about? A: It's about data privacy laws across Europe.
To read more CLICK HERE FOR THE FULL ANNOUNCEMENT
Please look at these introductions and come and welcome the new members that have taken the trouble to write an introduction. Joshuat says hi ..... Hello everyone,
Very happy to have found this site. Frenchy from Quebec Canada . ........Read more here Yo I am Jared .Hey! I am a 23 year old from Australia. I have had psoriasis under my arms and on my hairline since 2015, but as of last week (25/3/18) I was officially diagnosed with psoriasis after a flare-up.
I have it on my hairline, behind my ears, scalp, on my eye lid and now under my eyes.
I am self conscious about it, despite it being relatively minor, I am doing well-ish to keep it under control with 1% corticosteroids.
.
Come and read more here Hi everyone,
I'm Yossi and I was diagnosed with psoriasis almost a year ago after two years with false diagnosis of seborrheic dermatitis.
I live in Israel (Dead Sea yeah!) so my English isn't the best.
I'm still working with myself on how to deal with this disease, what treatment is the best for me. i strongly believe diet has a big impact on the skin so i'm trying to cut off sugar and gluten (not so successful for now Doh ). ....
Anyway, hope i can learn new things here and meet nice people.
Come and Read the rest here MrJimish says hi . ..I thought i would do a quick introduction before i jump in with questions :-)
I am 35 and have been suffering with serious psoriasis for about 18 months.
I havent really had any issues in the past with this, only sometimes on my face and scalp if i was run down or stressed. After a period of high stress a while back, i got it really bad all over my body, and i mean ALL OVER!
My legs got it the worst, it was like burns on my legs. I ended up going A&E as my feet and ankles had swollen up so bad i couldnt put shoes on.
Read the rest here Brown eyed girl writes I'm glad I found this group to learn from others who are dealing with the same things I'm dealing with. I have had Psoriasis for 42 years, but have been fortunate to have had times of remission. I was diagnosed with Psoriatic Arthritis when I was 31 - I remember sitting in the doctors office crying because I couldn't play with my 2 small children because the pain was blinding at times (oh man, if I bumped an inflammed joint - took my breath away for a minute - I remember even getting light-headed from the pain). Fast forward to 20 years later - kids moved out and are on their own, my husband and I are empty nesters - and we are loving it (don't tell our kids - we dearly love them, but it is nice to be in this chapter of our life).
I have taken Stelara for 2 1/2 years and had fantastic results, but it is no longer working on my skin - darn psoriasis is spreading on my scalp again - no where else though. But you know what? If this is my lot in life, I can deal with it - it could be something much, much worse! It could always be worse!
....
Read more here Mix-Tape wrote ..... .Hello to forum members , I have just joined today......Read more here Kentpatient says ...newly diagnosed and new to this group Hello everyone
I am newly diagnosed ....turned 50 in March and four days later experienced first ever psoriasis. I'm covered scalp to feet including my face which has caused me to feel anxious and depressed. So far had a short course of oral steroids that did nothing. Topical steroids hardly touched it. Currently using protopic on face and diprosalic on scalp and body. Any advice gratefully received......Read more here
Members Treatments, Questions and comments . click on the links and see if you can help.
Beverley talks about manky toenails .....Been using Stelera for a while now and Im pretty impressed with the results. However, my toenails are manky. Disgusting as it sounds, I end up picking at them and pulling bits of nail out. This results in my toes often being painful where its uncomfortable to wear shoes or even walk sometimes.
I was condidering having my toenails removed. Has anyone else done this. Will my toenails ever recover.
Has anyone any tips or suggestions.
Can you help? Click Here The SillyAk asks about makeupI like to use a concealer under my eye's to hide the dark circles, now, as I have developed psoriasis there I was wondering if it was possible to use to hide the psoriasis too.
More from the perspective of making it worse. I only use the concealer and nothing else.
...Read the rest here Martin222 has had his first injection of stelara and wrote ... well just had my first injection of stelara. even had to inject myself, but all went well. now fingers crossed n hope for the best
Read more here Mix-Tape asks about Ultra Violet sunbed treatment ... Does UV sunbed treatment for psoriasis at hospital still exist for patients in 2018 ?
I had this UV treatment in the 1980's but have always wondered how much radiation my body was exposed to ..........
I remember going to hospital every week and laying on a sunbed with dark protective glasses on , I was too young to remember for how long the sessions lasted.
Anyone else done this ?
Read more here
Psoriasis News and other related items .
EMA reviewing risk of dosing errors with Methotrexate
The European Medicines Agency (EMA) has started a review of the risk of dosing errors with methotrexate medicines.
When used for inflammatory diseases, such as arthritis and psoriasis, methotrexate is taken once a week whereas for some types of cancer, the dose is higher and the medicine is used more frequently. Mistakes have led to some patients incorrectly receiving a dose every day instead of every week. As a result, patients have received too much of the medicine, with serious consequences in some cases.
Read the rest of the study here This study looked at neuropsychiatric comorbidity in adolescent Psoriasis patients .
Psoriasis is a known risk factor for neuropsychiatric diseases among adults. Less is known about the impact on adolescents.
The Objectives were To investigate the association between psoriasis and neuropsychiatric comorbidity and social skills among adolescents.
A population‐based cross‐sectional study between 1 January 1999 and 1 January 2014 was conducted. The study included 1746 and 1366 adolescents (aged 16 to 18) with mild and moderate‐to‐severe psoriasis, respectively. The psoriasis patients were diagnosed by a dermatologist. Neuropsychiatric diseases were diagnosed by a neurologist and a psychiatrist, as appropriate. Social skills were evaluated using psychosocial assessment. Patients with psoriasis were compared with 884 653 healthy controls by a multivariate analysis adjusted for age, sex, country of origin, socioeconomic status, cognitive skills and body mass index. A subgroup evaluation was done for comorbidity that could only be evaluated for part of the recruitment years, using a univariate analysis.
......... Read more about it Here Enthesopathy abnormalities can be detected in patients with psoriasis
Nail psoriasis disease is associated with an increased probability of psoriatic arthritis and its clinical signs may have different correlates with the pathogenesis of adjacent bone destruction and have different prognostic value. Recent publications about psoriasis and nail psoriatic disease describe different ultrasonographic findings but the relationship between these ungueal alterations measured by ultrasonography and the presence of enthesopathy of the extensor digitorum has yet to be discovered.
The objective..... to describe which ultrasonographic characteristics of nail psoriasis are associated with the presence of subclinical enthesopathy in patients with PsO and assimptomatic PsA.
Read the rest of the study here Fumaric acid Esters safe and beneficial for long term clinical use
Fumaric acid esters (FAEs) are an established systemic treatment for moderate‐to‐severe psoriasis. However, the long‐term clinical safety and effectiveness of continuous FAE monotherapy and combination therapy have not been established.
The objective:....To examine the long‐term safety and effectiveness of FAEs as monotherapy and in combination with phototherapy or methotrexate in patients with psoriasis treated at a single centre in Germany.
Read the rest of the study 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
This month Raxl (aka Craig) has agreed to being grilled
Craig I have enjoyed reading your posts on the main boards but for those that dont visit regularly they may be interested in your lifestyle so here's a few questions for you.
1 ...You have said in posts and indeed posted some great pictures, do you have a favourite subject ?
Answer...I don't really have a favourite subject, I like to play around with action and nature but I pretty much shoot anything these days.
2 ...What sparked your interest in photography?
Answer....I became interested in photography in high school when our science teacher introduced us to black and white processing and developing. I continued with it through college and university and ended up working in the industry for quite a few years.
3..... Do you like to travel and what’s your favourite destination ?
Answer...I love the idea of travel, unfortunately I haven't had the oppotunity to travel much outside Australia. There are several destinations I really want to visit; The UK, in particular Scotland to visit the historic lands of Clan MacMillan ( my mother's maiden Name) I'd also love to visit France, Italy and Spain as well as Japan.
4..... What do you love most about Tasmania ?
Answer.....Easy one, the laid back lifestyle as well as great food, great wine and mostly untouched wilderness.
5...... What hobbies do you have?
Answer....I like to do a lot of things mostly with my family, I'm one of the principals in a volunteer organisation who train and deploy K9 Area search teams within Tasmania, I'm also a member of two car clubs and organise and compete in grass roots level motorsport events.
6...... I see motorsport is one hobby
Do you drive or spectate ?
Answer.... I both compete in and organise grass roots motorsport events in Tasmania we have several competition cars including a 1969 MGB and a 1997 MGF.
7....... If you could live anywhere on the planet where would you choose and why ?
Answer.....If I could choose anywhere, I would choose Tasmania for all the reasons I mentioned above. I would however move to Bicheno on the East Coast for the great beaches, fishing and diving.
Thanks for that insight Craig if anyone has more questions they might like to ask, the ask threads are all here ask threads
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Fred's Music Column.
Spiders: No I'm not talking about the Spiders from Mars. How many of you out there remember going to your local music shop on a Saturday afternoon and flicking through the singles that had recently been removed from the Pub or Milk Bar jukebox ? If you was lucky you could pick up a recent 45 single for half price or less, but because they had been used on a jukebox they had a big hole in the middle and no way was it going to fit on your Dansette.
That is where the Spider came in handy, they were small pieces of plastic with three ends and a small centre hole that with a bit of manipulation could be put in the large centre hole of your 45. My local music shop used to give them to you if you were a regular, if not you could purchase them for a penny and off you went and played your cheap used single at home. There were many designs and colours, but they started getting replaced with a little round piece of plastic that came with your new Hi-Fi.
Quick review of some new albums for you to try:
Gin Wigmore - Ivory: (Pop) Let's hop over to New Zealand. I'm not that in to modern pop music but I did enjoy the base tones and rasping voice on this album. Most tracks end a bit to abruptly for my liking, but it's a well put together album and I think it will do well.
Ben Harper & Charlie Musselwhite - No Mercy In This Land: (Bluesy) Harper (48) & Musselwhite (74) get together again for a second album and it doesn't fail to please. A good mix of 10 tracks (13 on deluxe version) not all Blues, but great harmonica as expected.
Reigning Days. - Eclipse: (Rock) A debut album by this UK band will get you moving right from the start, but it's not all head banging stuff and a couple of tracks wouldn't get you searching for your air guitar. But they have worked very hard to get this album out so give it a listen.
Part Time Friends - Born To try: (Indie) The second album from this French duo is released just in time for the sunshine. Great harmonies sung in English with a nice electro beat, this is better than their first album and will get you bopping around the garden after a couple of beers.
Ma Polaine's Great Decline - The Outsiders: (?????) A difficult one to put in a genre hence the ? I've been following this band a few years now and I often find myself coming back to them. Is it Jazz, Swing, Blues ? Give their new album a listen and let me know. *My pick of the month.
If you don't have access to any of the albums do a search and you will usualy find a track or two to try. Who knows you may find something different that apeals and you will play that new found track over and over just like you did in those old days when people used those Spiders.
Happy Listening.
Rest In Peace Deborah Coleman (October 3, 1956 – April 12, 2018)
JohnB's Recipe Spot
Baked Mushroom and Spinach Gnocchi
Ok so this month’s recipe has been somewhat of a revelation. Its quick, simple and tasty. My favourite home cooked Italian dish has been Leek and Pasta Bake (chances are this will appear in the autumn. It’s not a spring or summer dish – full fat comfort, so you will just have to wait!) but this just about supplants it, So on with the show . . . . . . .
This is supposed to feed 4 – yeah right. More like 2 and a light lunch . . . . . . . if you’re lucky.
Drag together the following:
150g Leaf Spinach (It’s around a small bag but it wilts to nothing so you could add more if you wish)
500g Gnocchi
250g soft cheese (The Philly type stuff, it can be extra light, but why bother)
150ml hot Veggie stock made with a ½ stock cube (Oh seriously! When on earth are you going to use a ½ a stock cube? Look, just throw a full one in. It’s all flavour! Otherwise it will just end up going manky in the foil on your countertop).
¼ tsp fresh ground nutmeg
250g Chestnut mushrooms, hacked up thickly
3 cloves of garlic, crushed (Nope 3 is never enough chuck a couple more in for good measure).
20g Parmesan cheese. (Don’t waste your money on this stuff, Parmigiana Reggiano is just as good and much cheaper. Well it is here in the UK!)
Right lets get our hands dirty;
Start by getting your oven nice and warm 200ºC, 390ºF, Gas Mk 4
Throw your spinach into a bowl and whack it in the microwave for a minute or two, until wilted. I’m sure I don’t have to mention to use a microwave proof bowl do I? Sorry Fred, ...or Steam gently in a colander over a pan of boiling water until wilted. Ooo idea you could use the water your Gnocchi is bathing in.
In a large pan of boiling water cook your little pillows of potatoie goodness as per the packs instructions, they generally float to the top when ready. Drain and set aside somewhere warm.
While the Gnocchi cooking, quickly mash together the cheese, stock and nutmeg in a jug
The recipe say to mist a large pan with a low calorie cooking spray. Tosh. Its bloody rubbish stuff. Just a splash of Rapeseed or Olive oil instead it is so much better. At least its not been messed with.
Cook your mushrooms and garlic until soft and tender. Add the Gnocchi and cheese mix giving it a good stir. Oh nearly forgot add half the Parmesan Parmigiana while you are mixing.
Pile the lot into a baking dish and sprinkle over the remaining Parmigiana. Whack in the oven for around 15 to 20 minutes until the sauce is nice and bubbling with just a tinge of colour starting to kiss the high spots.
Remove from the oven and let it cool just a touch – its nuclear hot and trust me 3rd degree burns of the Buccal cavity aren’t pleasant.
For a bit of added oomph blitz some long-past-saving sourdough with some thyme and add it along with the sprinkling cheese.
So to serve pile into a warmed pasta bowl and to accompany?..... Mmmmm Tough choice ......... it has to be Italian and most definitely white. My choice would be a nice chilled Gavi.
Boun Appetito.
JohnB
To read more recipes or to add your own
Click here
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Information
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Members photos.
This month I have added a picture from Craig's photo album... Craig has posted some stunning pictures .
Log in to see more of Craig's pictures here
I will also add a couples of pictures from Caroline again from the Keukonhof festival in Holland
We have an active Off Topic Board and we thought we would share some sneaky peeks with our lurkers.
Pop in and look how bad the weather was last month where Dave Foster lives See all Daves pictures .. here Why not have a look at Turnedlights latest garden project
I thought I’d share a little garden project with you, I wanted a raised bed to grow veg and I wanted something you could sit on the edge of Read more here
Poetry section
This is a new section where any member can submit a poem for inclusion in the newsletter ..
"Fuzzy"......
What was that thing
I was thinking -
just a moment ago, my brain’s going slow-
you know,
that thing?
What was that thing
I was doing -
just a minute ago, they were all in a row -
you know,
that thing?
What was that thing
I was saying -
just a second ago, I was in full flow -
you know,
that thing..
It’s gone. .
Author Turnedlight
Sunflower Competition 2018
Several members have planted seed with variable success , mine were doing very well until I checked one morning and found the snails had a party while I was sleeping leaving me with just a few stalks ....so it's not too late I'm replanting mine ...get entering Sunflower Competition Here .
Usual rules apply. You grow, steal, beg, photograph, make, etc a sunflower.
Each month I will add a tip or a helpful link to assist with your posts ..
Why not measure your psoriasis score
Fred made the Psoriasis Score page to help him keep track of how his treatment is helping his psoriasis. Please note it is not the pasi score used by dermatologists but it will help you keep track of how you are doing. It can be used by Members and Guests. you can find it on the menu bar above.or the link below
Answer the questions on coverage and severity, ranking them from 0 - 4
0 = None / 1 = Low / 2 = Medium / 3 = High
After you answer all the questions push the score button, a window will pop up with you score. (if you get a score NaN it's because you missed a box, you need to tick all the box's)
It's private and no record is kept, so keep a note of your score to compare with your next visit.
Members can put scores in their profiles by clicking "User CP" / "Edit profile" / "Additional Information"
You can also post your score on this thread if you want and share how well you are doing.
. psoriasis Score
Using Quotes If you want to quote another post or something from off the forum ( be careful, no spam) this tutorial will show how Fred wrote.....I have noticed some of you are having problems and not sure how to use them .....here's a little tutorial to show you how.
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!
Arsenalfan has updated his thread So I saw my dermatologist yesterday and explained that the Fumaderm hasn't worked. She gave me the options of persisting with the Fumaderm because it's usually only stopped if improvement isn't seen after 6 months or moving on to something else.
Read more HERE bazza1965 gives an update from his January reviewbest to read from the start see full thread here Bill has updated his DMF thread with a table of resultsHere
Spiders: No I'm not talking about the Spiders from Mars. How many of you out there remember going to your local music shop on a Saturday afternoon and flicking through the singles that had recently been removed from the Pub or Milk Bar jukebox ? If you was lucky you could pick up a recent 45 single for half price or less, but because they had been used on a jukebox they had a big hole in the middle and no way was it going to fit on your Dansette.
Several members have planted seed with variable success , mine were doing very well until I checked one morning and found the snails had a party while I was sleeping leaving me with just a few stalks ....so it's not too late I'm replanting mine ...get entering 