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Hi and welcome to your June Newsletter... Here we are halfway through the year, it's been a tough time for Fred trying to keep up with the new Data Privacy Laws that came into effect at the end of last month, we believe we have made every effort to comply with the requirements, but if you feel you have issues please read the statement below and click on the link to voice your opinions or raise an issue
Another change to the introduction threads has happened, they will now be closed after a period of 3 months to avoid them being answered years after the thread starter posted it...the idea of the section is just to introduce yourself so after a period it will be closed, you are encouraged to start as many new threads as you wish in any of the
Health Boards Or any of the other members only boards You can read more about this policy HERE
I hope you are all managing to keep the psoriasis under control, and will update your threads if you have one, I look forward to seeing you on the boards for a chat or to read of your updates
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.
General Data Protection Regulation
A new rule came into force on 25 May 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 AND COMMENTS
At this time of year I like to look back at psoriasis club and think of the help and support it has given to so many members and guests, the club is what we as members have all made it, the best psoriasis forum. It has grown tremendously through the year, and its testimony to its usefulness that so many of us are regular visitors or contributors, some like myself are clear of psoriasis, but still feel supported by the positivity and friendliness of the club.
I think we can all agree that Fred has done a first class job steering the club through the last 8 years, by keeping it focused on its prime objective to support and inform fellow sufferers of psoriasis and psoriatic arthritis. At the same time making sure it's free for all to access and a safe, friendly environment without any spam or unpleasantness. It's still the only independent free psoriasis forum On the internet
All our members are to be thanked for keeping the club as active as it is whether a contributor or just a reader you are all as welcome at the club, and we do try to encourage members to at least introduce themselves, although it's not compulsory
So Happy 8th Birthday and congratulations Psoriasis club to another successful year,
Please look at these introductions and come and welcome the new members that have taken the trouble to write an introduction. Tdjclarke writes...Hi there ..... I'm affected mostly by Psoriasis, but I feel the onset of the arthritis coming on. My doc suggested Methotrexate 2 yrs ago. After some research I decided it sounded too scary. About a month ago I went back and knowing how much the Psoriasis had progressed, knowing I would take him up this time. It's the 4th Friday and tonight I am stopping Methotrexate. I was seeking info as too whether there would repercussions and if so what can I expect? how long should I continue the folic acid? Read more here kabob123.is new to group and wrote
Hello and glad I found this group. My name is Bob and am 46 , live in Chicago area and was diagnosed with psoriatic arthritis 5 years ago. I have had psoriasis for about 15 years. Was manageable at the beginning but worsened with age. Once my joints/tendons etc starting hurting daily I knew something was going on. Took awhile to get correct diagnosis. I am on Tremfya now and has worked great since January. Psoriasis is almost completely gone and arthritis is much better and manageable. I also was on Humira, Enbrel Otezla, and Cosentyx in the past.
Come and read more here Georgie says Hello ,
Hi my name is Georgie. I'm 25 yrs old. I have been living with this for 5 years and it only seems to get worst at times. I used to be very confident since I work out and love the beach. But psoriasis destroyed it all. My psoriasis has really affected my mental health. I tried accepting it but I just cant sometimes. I have to learn and have hope. Thank you.
Come and Read the rest here
Members Treatments, Questions and comments . click on the links and see if you can help.
Kentpatient has a question about psoriasis on the back of the hands ....I have psoriasis in many places but it is different on my face (smooth but red and swollen) and my hands and feet to everywhere else.
My question is about the backs of my hands....the psoriasis seems so thick and dry (it's not spots but just a whole area) that aside from soaking my hands in coconut oil no emollients work as they don't seem to 'get through' the thick skin. Does anyone have any tips?.
Can you help? Click Here Snitter65 has written about his Tremfya, Otezla, and cyclosporine journeyThis has been a long journey. Long story short I have used humira, methotrexate, taltz, topical cream, and the light. 4 yr journey. In September I landed in hospital with skin infection and was septic. By dec 2017 my skin was so bad I could barely walk as my feet were a mess, hands were so bad I wore gloves. It was in my ears, scalp, stomach. I have pustular psoarisis and Terrble joint pain. Dr. Prescribed me. Cyclosporine in Jan. Skin cleared but now a big jump in blood pressure. Took Tremfya Tuesday which I had trouble injecting, started otezla yesterday. Reducing the cyclosporine over next couple weeks. I have had congestion for about two months. Very nervous about new meds. I have felt sick all day, had diarrhea. I already suffer from insomnia before the new meds. Appreciate feedback thoughts, similar treatments, and suggestions
...Read the rest here arsenalfan13 writes about starting Methotrexate ..So after an unsuccessful 3 and a half months on fumaderm I'm now trying methotrexate. I was given a test pack yesterday by my dermatologist which is x2 2.5mg pills. Was told to take them both at the same time and then get blood tested 3 days after and then 7 days after. If they come back fine then I'm all set to start properly in a couple of weeks.
So I'll be updating this thread every so often with how I'm getting on.
Took the test pills yesterday with no problems. I don't know if the dose was high enough to get side effects or even when they are likely to occur? I hear the next day?
Read more here a01020304 asks has anyone had these ..In 2006 I had Sarcoidosis and Erythema nodosum and but 2010 was 94% recovered, but 5 months ago i walked into a shopping trolley and got a bruise on my leg and it never really recovered, the bruise went but the small cut soon expended into 50p shape itchy skin that never really healed, i just thought not much of it as it was just itch skin that looked like it was peeling but it never did.
Anyway, went to GP yesterday and he said it was Psoriasis
Read more here araujo asks about psoriasis treatment with crohn disease ..Hello everyone !
I am new to this site and i want to say hello to you all!
I have psoriasis for 8 years and for the last year i was on cosentyx and i was clear 100%.
Two months ago i found out that i had crohn desease and my dermatologist stopped the cosentyx because of that and now the psoriasis is back .She said i shoud get on otezla but i am afraid for the side effects .I dont know what to do...
Read more here Kentpatient is newly diagnosed and about to start acetretin ..Hello. I have just been diagnosed with psoriasis at 50, prescribed Acitretin: pick the medicine up tomorrow as it wasn't in stock today and I am worrying about the side effects. I have psoriasis really badly on my scalp, all over my face bar my chin (it is red and blotchy and then goes deep red and blotchy and my eyelids peel constantly), both arms, less prominent on my chest and back and a dozen or so plaques on my legs. I literally woke up on 08 March with sore red eyes and by 21 March I was covered. I am worried about the fact Acitretin can make the rash worse: I feel that if it does get worse I won't be able to cope with it. I am using protopic on my face and diprosalyic acid on my body as well...will those topical ointments help to stop my psoriasis worsening when I start the Acitretin?
Read more here
Psoriasis News and other related items .
NICE ready to approve Tremfya
Guselkumab (Tremfya) is recommended as an option for treating plaque psoriasis in adults, only if: the disease is severe, as defined by a total Psoriasis Area and Severity Index (PASI) of 10 or more and a Dermatology Life Quality Index (DLQI) of more than 10 and the disease has not responded to other systemic therapies, including ciclosporin, methotrexate and PUVA (psoralen and long-wave ultraviolet A radiation), or these options are contraindicated or not tolerated and the company provides the drug with the discount agreed in the patient access scheme.
Read the rest of the study here Cosentyx most cost effective for psoriasis in Germany.
This study suggests Cosentyx (secukinumab) is the most cost effective when used as a first in line for psoriasis patients in Germany.
Secukinumab, a fully human monoclonal antibody that selectively neutralizes interleukin‐17A, has demonstrated strong and sustained efficacy in adults with moderate to severe psoriasis in clinical trials.
This analysis compared the cost per responder of secukinumab as first biologic treatment of moderate to severe psoriasis, with adalimumab, infliximab, etanercept, and ustekinumab in Germany.
A 52‐week decision‐tree model was developed. Response to treatment was assessed based on the likelihood of achieving a predefined Psoriasis Area and Severity Index (PASI) response to separate the cohort into responders (PASI +75), partial responders (PASI 50 to 74), and non‐responders (PASI -50). Responders at week 16 continued initial treatment, whereas partial responders and non‐responders were switched to standard of care, which included methotrexate, cyclosporine, phototherapy, and topical corticosteroids. Sustained response was defined as 16‐week response maintained at week 52. A German health care system perspective was adopted. Clinical efficacy data was obtained from a mixed‐treatment comparison; 2016 resource unit costs from national sources; and adverse events and discontinuation rates from the literature. We calculated cost per PASI 90 responder over week 16 and week 52, as well as cost per sustained responder between weeks 16 and 52
.........
Read more about it Here FDA approves Cimzia for plaque psoriasis .this is just extending the label for Cimzia (certolizumab pegol) for adults with moderate to severe plaque psoriasis Read the full thread here Filgotinib for psoriatic arthritis phase 2 results: Filgotinib was generally well-tolerated in the EQUATOR trial, with no new safety signals observed and similar laboratory changes compared to those reported in previous trials with filgotinib in rheumatoid arthritis patients. The adverse event rate was similar in both groups with mostly mild or moderate events reported. There was one serious infection in the filgotinib group.... Read the full thread 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 Dave has agreed to answer a few questions for us
Dave you have been a member here nearly as long as I have, so I’m glad you have agreed to the grilling ..... Q.... I see you live in East Yorkshire, have you always lived in that area ?
A......No I was born in Chesterfield in Derbyshire and lived there for many years then moved to South Yorkshire and lived in a small village called Bramley for 24 years, we have been in Bridlington now for 7 years.
Q.....what made you choose your current location?
A...We wanted to be near the sea and with Clare,my daughter, we needed somewhere that is reasonably flat which it is.
Q......if money wasn't a factor is there anywhere else you would choose to live ?
A..Portugal maybe or Canada , we thought about buying another boat but bigger and living on that at one time but circumstances change and determines how your life pans out.
Q......Do you have any hobbies you can tell us about ?
A.Photography is my main hobby but between looking after Clare and I am a Director of the RTM Co Ltd which is the company that looks after the 36 apartments I live in I don’t seem to have much time spare.
Q......You have posted some great pictures in members photos section, will you will be posting more ?
A..I would love to have more time to do more photography and I try to do as much as I can as time allows.
Q...........Who is the cook in your family, you or Mrs Dave? and what's your favourite dish ?
A..Even if I say it my self I am not a bad cook but we do try to share it between us but Mrs Dave cooks yorkshire pudding which is far better than anything I can achieve. I love a good ribeye steak with all the trimmings and it’s one of the things I enjoy to cook, and with a good red wine I am happy.
Q......About holidays do you get away much or are you a home loving person ?
A..Holidays, what are those ? In the last 10 years or more the only holiday I have had was a week in Cyprus when my son got married, which is 5 years ago now.
Q.......Last one if you could go anywhere for a holiday where would you choose ?
I have been all over the continent at one time for work, so I am not too bothered about that and have had a couple of holidays in the Canary Islands which were OK but of all the places I really liked was Canada , my son lived there for around 6 years in Winnipeg which I thought was not very nice, but other parts of Canada I thought were great in fact I did look at an apartment overlooking the harbour area in Toronto at one time, a superb place with just stroll down the quay, every Sunday a jazz open air session in the summer. I thought that it was a very interesting place and a short drive to the wine area and Niagra Falls.
Thanks for your answers Dave if anyone has more questions for Dave they might like to ask, the ask threads are all here ask threads
.
Fred's Music Column.
Give Peace A Chance by John Lennon and Yoko Ono was recorded on the 1st of June 1969 in a hotel room in Canada. The recording was made with four microphones and a simple four track tape recorder. The room was packed with journalists and celebrities, most of them taking part and singing or playing whatever they could find.
Yes 49 years ago this month we were all singing Give Peace A Chance and you can still hear people singing it today. I wonder what John Lennon's lyrics would be about now if he was still with us ??
Decades: Who had a number 1 hit with a song in the given year ?
1950s: "(How Much Is) That Doggie in the Window" in 1953?
1960s: "Sunny Afternoon" in 1966?
1970s "The Streak" in 1974?
1980s "Shaddap You Face" in 1980 and 1981 ?
1990s "No Limit" in 1993 ?
2000s "That's Not My Name" in 2008 ?
1950s: If you said Patti Page or Lita Roza they are both right. Patti had a hit in the USA and Lita had a hit in the UK in 1953.
1960s The Kinks had a hit with "Sunny Afternoon" in the UK, Ireland, Canada and The Netherlands in 1966.
1970s Ray Stevens had a hit with "The Streak" in UK, USA, Canada and New Zealand in 1974.
1980s Joe Dolce had a hit with "Shaddap You Face" in around a dozen contries between 1980 and 1981.
1990s 2 Unlimited had a hit with "No Limit" in 15 contries in 1993.
2000s The Ting Tings although charting worldwide only got to #1 the UK with "That's Not My Name" in 2008.
Album Review: Ry Cooder - The Prodigal Son: This is an album I have been waiting for. I had managed to get hold of a couple of tracks before release and I was sure it would be worth a mention on my column. I wasn't wrong and this is Ry Cooder going back to his roots with some new tunes and his take on some classics. If you are a fan then I think you will like it, if you are not a fan then I suggest you give it a listen anyway as you have probably enjoyed his music in films without knowing it. *Oh and you don't need religion to enjoy this album, it's going to be a classic Ry Cooder.
Two to watch out for this month: As Long as I Have You - Roger Daltrey: This is Roger Daltrey's ninth solo album and it should be out today 1st June 2018. Though a solo album it does feture Pete Townshend's guitar on seven tracks.
Blow Your Mind - Wilko Johnson: From a Man that should be dead (his words not mine) 'Blow Your Mind' is Wilko's first album of new material in 30 years, and you won't want to miss this one. Out June 15th.
Random Track: Robin Trower- I'm Out To Get You.
See you next month.
JohnB's Recipe Spot
Barbecued Bones
Oh . . . . . . . . . . (fill in expletive as appropriate). Where on earth has that month gone?
Well I was going to do a Baked Cod recipe this month – then the sun came out. I must say it is a nice surprise. I can’t remember when we last had more than three consecutive days wall to wall sunshine! So as its sunny its Barbecue Time!!
Bones? Yep. They were christened many moons ago when we had a Barbie at my parents one weekend ( - oh hang on that was probably when it was last sunny and getting on for over 20 years ago) and I did my infamous BBQ Chicken Drumsticks. My then barely talking nephew asked for a Bone and after a lengthy inquisition it turned out he wanted another chicken drumstick and so the name stuck.
Right lets get our hands mucky. This is so much easier if you have a food processor, but if you don’t just chop up all the hard stuff really finely. Now I make this by sight and taste so please bear with me with the amounts it may need a little adjusting to suit your own palate
Start combining about 200ml Tomato Ketchup, 100ml Worcester sauce, 50ml Dark Soy sauce, 50ml Cider Vinegar, a good squeeze of Tomato Purée, 3 – 4 heaped tablespoons Muscovado sugar, 2 heaped teaspoons Celery Salt, 1 teaspoon Garlic Salt, 1 teaspoon Onion Salt, 1or 2 heaped teaspoons Ground Cumin and Sea salt flakes if it needed.
Hack up a medium onion, normal common or garden brown or a nice red one. I do a small one of each. Skin a couple of cloves of garlic as well.
Throw everything into a Food Processor and blitz until nicely blended and taste. It should be fairly sharp and overpowering at this point, it does go a lot milder when cooked.
Get your Bones and put a couple of slashes in the fleshy bit, this helps get the flavour in to the drumstick. Arrange in a single layer in a non-metallic dish and generously slather the sauce over the Bones. Alternatively chuck everything in a huge zip lock bag and give ‘em a right good massage and stick in the fridge to marinate. Keep some sauce back to daub over while cooking. This needs at least a couple of hours but overnight is better.
Remove from the fridge an hour before cooking to bring up to room temperature. Now if you are brave and have tons of patience you can throw them straight on the Barbie, Me I prefer to stick them in the oven on around 170°C / 340°F / Gas 3 for half an hour or so then finish them off on the Barbie.
Oh damn! I forgot about the sauce again! The remaining sauce, stick it a sauce pan, bring up to a simmer and cook gently for 10 minutes or so allow to cool and split into two portions. One for painting on the bones during cooking, the other as a condiment.
Shake off the excess sauce from the Bones and introduce them to the Barbie. Cook over a medium heat with the lid down (assuming you have one) until cooked through and nicely coloured – this doesn’t mean charred beyond all recognition. During cooking occasionally paint the sauce over the Bones to build up a nice dark flavoursome sheen. You may get the odd flair up from stuff dripping, I use a cheap nasty beer sprayed from a small hand sprayer to quell the flames. The odd squirt over the bones also helps to keep them moist. Remove and serve, just remember to hide a couple from thieving gits.
Serve with oh that’s obvious – more! For drinks then, there is really only one choice. A nice chilled German or Czech lager. At a push you could do a chilled Zinfandel Rose or you wouldn’t get an argument from me for a big cold jug of Pimms cheers
Burp! OOPs ‘scuze me.
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.
1 / 5
Caroline: Only one of the beautiful flowers at the Keukenhof exhibition.
2 / 5
Turnedlight: This is last summer in Swanage - I liked the sparkling water and almost monochrome colours.
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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!
Honorary Member Awards
2018 awards are awarded annually on the clubs birthday
As a thank you to the members that have taken the time to contribute to Psoriasis Club and help us keep the forum active we have introduced an annual Honorary Member award.
This award is given on the eve of Psoriasis Club's Birthday 30 May (8 years this year) and will be awarded or revoked on that day each year.
To receive the Honorary Member award you will need:
#1 At least 1 full year membership as of 30 May.
#2 Made at least 5 posts in the psoriasis boards.
#3 Made at least one post in the psoriasis boards since January.
To read more and see list of awards Click Here
Sneaky peek
We have an active Off Topic Board and we thought we would share some sneaky peeks with our lurkers.
Remembering things from your childhood Things like my brother got the Beano, I got the Dandy..
Remember picking a plantain (long tough stalk, brown top) from the lawn and bending it around itself to fire the top off at someone? what memories do you have of childhood
See all The memories or please add your own .. here Things we take for granted We all take so much for granted that sometimes it's hard to remember being without them For instance flick a switch and a light comes on ....can you think of more
Read more or add your own here
What are you doing now ? Beverley wrote .........I’m sat on our balcony enjoying the sunshine.
I’m wearing a bikini top and shorts.
No big deal you might think. To me it is a major breakthrough..........
Looking forward to my holiday in 4 weeks and have bought a couple of bikinis to rock on the beach.... to read more or add to the thread click here
Poetry section
This is a new section where any member can submit a poem for inclusion in the newsletter ..
"Psoriasis"......
waging the endless war
against unseen enemies,
the cell factories
turning out lymphotroops
the dead layers of armour
piling up,
building up.
no messenger has made it through to say
‘cease fire’
‘the enemy has retreated’
the enemy a myth -
imagined
creative thinking on a cellular level
no comms
just battle
on,
and on,
and
on. .
Author Turnedlight
Sunflower Competition 2018
If you've entered how are yours progressing? Mine are looking overcrowded in a pot...but they are still growing ....so it's not too late...get entering Sunflower Competition Here .
Usual rules apply. You grow, steal, beg, photograph, make, etc a sunflower and tell us about it or post a picture
Each month I will add a tip or a helpful link to assist with your posts ..
Test Board
If you want to make a post or a thread but are unsure how it will look you can go here
Test a post To see what it will look like, you can try posting images, try quoting a post or try starting a thread, whatever you put there, and when you are happy with how It looks, you can then ask Fred to delete it all
POSTING PHOTOS : If you would like to add pictures of your psoriasis or have a photo thread in the off topic section, we have a tutorial to help you Tutorial
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!
AlexBMW has updated hie Cosentyx thread I hadn't realised it had been so long since I last posted and started my treatment.
An update from me after 18 months on Consentyx
-My skin is OK at the moment, but after a recent trip to warmer climes, my the skin on my arms worsened.
- Cosentyx seems to be holding *some* of my P back
- My medication delivery company missed a delivery by 2 weeks, which caused my P to creep back somewhat, where it has remained stubborn in some places. It almost feels like I need another loading dose to get it back on track
Read more HERE MrGnomusy has updated his thread and wrote My dermatologist have approved me for Stelara, I'll be starting at 90mg this afternoon and if all goes well I'll receive the booster dose in a month. Then every 3 months. I'm kinda worried tho, cause this means that I have to discontinue my UV-B treatment I'm currently undergoing, and if it's not working I'll be spending another summer locked up inside. see full thread here Clear30 has started a new thread and writes Hi all, not been here for a while so thought I would give you an update.
GP gave me Betnovate cream to try and referred me to skin specialist, only had to wait 4 weeks, that's the good bit.
Was offered another cream or light therapy which I refused as all creams/ lotions have made me so sore,told her I do not want to try any more. ........read the rest Here
Give Peace A Chance by John Lennon and Yoko Ono was recorded on the 1st of June 1969 in a hotel room in Canada. The recording was made with four microphones and a simple four track tape recorder. The room was packed with journalists and celebrities, most of them taking part and singing or playing whatever they could find.
If you've entered how are yours progressing? Mine are looking overcrowded in a pot...but they are still growing ....so it's not too late...get entering