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Well it's been an eventful few days at the end of the month as many of you that have tried to log in have found. The site was down for several days through no fault of the forum. Fred has put an explanation below to help us understand We are now up and running as well as ever with lots of messages of support, but it does highlight how we take things like the forum for granted and expect it to always be there. I would like to thank Fred for the amount of extra work this has caused him to get this platform up and running again, without loss of data
Apart from that 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 and update their threads which does help new members when trying to see what works for you and whether it's still working or not
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 Would you like to have a feature in the newsletter, If you would like anything you've done or seen that might be interesting to other members, contact me or if you prefer any of the helpers HERE
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Major Downtime
As you may be aware Psoriasis Club was off-line from the 22nd September till the 26th. Unfortunately the downtime was of no fault of our own and was out of our hands. I have posted a longer explanation on the forum in the Members Only section and our members can read it Here
I just want to reassure all our members and guests that Psoriasis Club is fine and it's here to stay. What happened was not malicious or to do with funding, it was one of those situations that shouldn't/couldn't happen. But it did and as a result I have put some extra measures in place that should it ever happen again we will be back on-line a lot quicker.
Should anything ever go wrong I always post on our Twitter account as soon as possible so I suggest you make a note of our account here: @PsoriasisClub *You do not need an account or need to follow us to see the announcements.
You all have my word that I will never just drop Psoriasis Club. It is not in my nature to treat people like that, I have stated on the forum that I have put enough funding in place till August 2020 and that still stands. After that date I see no reason to stop but if I did there are already things in place to keep it going even if I wake up dead in the morning.
So continue using Psoriasis Club either as a member or a guest (the choice is yours but we have great bunch of members) and thank you to everyone that supported us through this long downtime.
Please look at these introductions and come and welcome the new members that have taken the trouble to write an introduction. Jopeejay writes .... Hi. I’m Jo and I’ve just joined this forum. I was diagnosed with psoriasis in January 2018 after 6 months of not really knowing what was happening (to my scalp especially). Got nowhere with GP so paid £180 to see a private consultant dermatologist who made the diagnosis in 30 minutes. Prescribed Sebco, Betamousse, Alphosyl shampoo and Eumovate. However, I haven’t really seen any real improvement. Returned to GP who, after telling me that I’m “an unfortunate case” prescribed Dobovet which actually started to help but now my hair is falling out and I’ve got bald patches!! It’s really affecting my confidence. Anyone got any ideas?
Read more here @Lynn wrote Hi. So great to hear about this group and to read the various threads-they are of great comfort to me and are also so informative. Thank you.
My daughter (18) has extensive guttate P on her body, legs and arms and plaque P on her scalp.
She has been on treatment for the last 18 months with no change at all to her P-in fact it has become worse.
She is on the maximum dosage of methotrexate that our doctor is comfortable with and also has topical creams- dovobet,diprosalic, various tar products, clobex shampoo(which gives her painful hairline acne if used for too long. ) I am probably forgetting a host of other potions and lotions.
Read more here and see if you can help
yato says hi .... I'm yato, 13 had psoriasis since i was like 6?? it started on my scalp and gradually went down into my eyebrows but never progressed further until about 5 years later. now its all over my body (at least 50-60%) and i have no pill/shot i can take since i'm not 18 yet.
the only medicated thing i can use is one of those weak steroid creams, but those have proven ineffective as there isn't enough for me to use it on a regular basis.
Read more here Hithere2233 wrote just started Siliq......Hi All-
Have had severe psoriasis for about 15 years. Started around the age of 35 or so. Tried a bunch of steroid ointments which helps minimally. I was my derms first patient for biologics many years ago. I believe it was Enbrel. Can't remember I've gone through so many. Most of them work for me for a couple of years, then start to lose their effects. Start to see positive results in a few weeks, then about 4 months for about 80-90% clearances.
After Enbrel, started Humira, then Stelara, then Cosentyx. Cosentyx worked for about 3 years until the beginning of this year. Was about to start Taltz, but my derm said I could try Humira again since Taltz doesn't work too well, from his experience. Went back on Humira for a couple of months, but didn't see any improvement this time around
Can you advise ..Click Here NancyMullendore wrote Hello I've been reading posts on here for a couple of months .... and am finally doing my introduction.
I was born w/psoriasis. I turned 50 yesterday. I've had psoriatic arthritis about 10 yrs but didn't realize that's what it was.
I've been trying to manage it all with diet and lifestyle, also tanning beds. However, the progression of symptoms made me realize I could no longer manage this horrible disease on my own.
Skipping ahead, my dermatologist got me samples of Cosentyx in hopes it would be approved by my insurance but they want me to try Humira first.
My first loading does of Cosentyx began on 8/24/18 and did all 5 weeks before the insurance denial. I did just 150 mg instead of 300 mg.
My psoriasis started clearing so quickly. It was amazing. It didn't do anything noticeable for the psoriatic arthritis. No noticeable side effects.
I will be starting Humira, assuming all goes as planned. I hear Humira works pretty well for psoriatic arthritis and I'm trying to ignore the negative stuff I read about it.
This forum seems amazing.
Read more here ztwp is starting cosentyx and asks .... day one on shooting the med up. How long before it works if it works.Thanks
Read more here Marie is new here and says .... I wanted to get some feedback on Taltz. I just started the injections yesterday, and it hurt so bad, do these injections ever stop hurting ....l
Read more here
Members Treatments, Questions and comments . click on the links and see if you can help.
Imapsomum writes about phototherapy before Stelara for her son ....Hello All
Had an appointment with the GP today. He suggests trying a round of phototherapy before trying Stelera. A gentler treatment and if it works and the P doesn’t come back- awesome! If it does come back, nothing lost and THEN we try Stelera. Makes good sense I think. What are your experiences with phototherapy?
Click Here Imapsomum also asks .... Had a few days where we basically pretended Psoriasis was a not a thing in our lives. It was blissful but now I am crashing. The face P is the most crushing. Getting closer to going the Stelera route but he is just so young ? I been looking for info on Elidel as a doctor friend told me it could be be good. I can’t find anything on here. Has anyone here tried it?
Read more here ..Click Here
Psoriasis News and other related items .
Is Dermatology Life Quality Index working as well as it should I found this interesting as I no longer bother filling a Dermatology Life Quality Index (DLQI) at my dermatology appointments as I find none of the questions relevant.
The Dermatology Life Quality Index (DLQI) is the most frequently used health‐related quality of life (HRQoL) instrument for skin diseases. According to the DLQI instructions the responses “not relevant” and “my skin problem has not at all affected this aspect of life” (“not at all”) have to be scored as 0 = no HRQoL impairments.
The aim of this study was to estimate potential bias of DLQI measurements for patients with psoriasis based on items considered to be not relevant...... read the rest of the study
Here Psoriasis and Psoriatic arthritis over time in Ontario .... The objective was
to estimate the prevalence and incidence of psoriasis and psoriatic arthritis (PsA) over time in Ontario, Canada.
We performed a population‐based study of Ontario health administrative data using validated case definitions for psoriasis and PsA. We computed the crude and age/sex‐standardized cumulative prevalence and incidence of psoriasis from 2000 to 2015.
Read the rest of the study Here Following on from this thread Ilumya gets FDA approval
Here is an update to this thread:
Ilumya has been given a different name in Europe which is usual for the EU.
Sun Pharma today announced that Almirall has received the European Commission (EC) approval for ILUMETRI (tildrakizumab) for the treatment of adults with moderate-to-severe chronic plaque psoriasis who are candidates for systemic therapy. As indicated by Almirall, roll out of ILUMETRI in Europe will start in the next few weeks.
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.
Fred's Music Column.
Portable Harmonium: The other day I was watching a video of Radie Peat playing the portable harmonium (aka Pump Organ). Though I had heard the instrument before being used by other musicians or on some track that just stuck in my head, I didn't know that much about it. So let's have a dummies quick guide of the portable harmonium shall we ?
It's a great instrument and has been used by the Beatles, Pink Floyd, Elton John, Donovan, Supertramp to name a few and is popular in Indian music. Imagine a portable version of a church organ and you are close to what it is capable of producing. One hand is used to pump air through the instrument and the other hand is used to pull/push knobs and play the keyboard. I'm not clever enough to be able to play any musical instrument let alone explain exactly how it works so that is as quick and simple as I can get, but I do suggest you use your favourite search engine and find yourself some videos about the Portable Harmonium it's an amazing instrument.
*Oh and the video I was watching when I thought of writing this piece can be found by searching for "Radie Peat performing Dark Horse on the Wind" The one filmed in Kilmainham Gaol live is well worth a look.
Decades Quiz Time: The BBC once had a reputation of banning songs from airplay, how many of these do you know the answer to ?
#1 1950s: Burn My Candle - Shirley Bassey
#2 1960s: My Generation – The Who
#3 1970s: Lola – The Kinks
#4 1980s Invisible Sun - The Police
#5 1990s: How many songs were banned during the Gulf War by the BBC ?
#6 2000s: Did the BBC finally give up on their banning ?
#1 1956 The words were considered too sexy/risque for the BBC and contained too many double entendres
#2 1965 It was originally classed as being too offensive to people that stutter by the BBC.
#3 1970 The orginal had the words Coca-Cola but product placement was not allowed on the BBC and it was changed to Cherry-Cola.
#4 1981 The BBC said the video included to many video clips from the Northern Island conflicts.
#5 1990 - 1991 The BBC banned 67 songs during the Gulf War.
#6 The answer is yes and no. They did ban The Pogues - Fairytale of New York but soon lifted the ban after complaints.
And finally:
I'm sorry it's a shorter version of my column this month but if you read the section Major Downtime you will see I have been kept busy.
Random Track: Bruce Springsteen - Open All Night.
See you next month.
Recipe Spot
Herb rubbed Steak with Squash Mash
So for this months culinary education I thought a bit of Moo Cow sounded nice.
So for your shopping list this month beg borrow or steal the following goodies;
2 Healthy steaks of your choice we find sirloin is best about 12mm thick
1 Red Onion
1 Tablespoon Balsamic Vinegar
3 Large sprigs of fresh Thyme plus 1 tablespoon Thyme leaves
1 large clove garlic
and for the Squash mash
600g or so of Butternut Squash
1 Large clove garlic halved (Never enough – it can easily take 2 or 3 cloves)
1 Tablespoon Mayonnaise
Heat a frying pan and add a splash of oil cook the onions over a low heat for about ¼ an hour until they are really soft. If they start to stick add a few drops of water. Add the balsamic and about 5 tablespoons of water then reduce the liquid by half. Take off the heat cover and keep warm for later.
While a large pan of water is coming to the boil, peel, de-seed a and hack your butternut squash into 25mm cubes. Throw into the boiling water with the garlic and cook for about 15 minuets or so until the squash is tender. Drain it well and allow yourself to take the stress of the day out on the squash by giving it a good mashing. Just toward the end mash in the mayonnaise (yeah it really does work!). Be careful to make sure your squash is good and dry or it can make a really soggy mash.
Now to the best bit cook your MooCow. If you are using a frying pan or griddle, have it smoking hot ready to cook. Lightly oil your steaks and give each a good rubbing with the thyme sprigs and the cut face of the garlic. Griddle, Fry, Grill or Barbeque your steak to your liking. In our house its one blood sacrifice and one cremation. I’ll let you guess who’s is who’s.
Place your nicely cooked or ruined steak on a plate, spoon over the onion sauce along side a good dollop of the squash on the plate to keep the steak company. If you really need something green on your plate, simply blanched spinach works well.
To accompany;
Good news Fred, this dish can easily tolerate a good Merlot. But I think a nice Cabernet Sauvignon would be better (only because I am finding Merlot tastes like vinegar to me since losing my sense of smell)
Enjoy
Johnb
To read more recipes or to add your own
Click here
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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!
Please help Psoriasisclub
You may or may not be aware that we have recently had a huge problem with the Psoriasis Club website being off-line for 5 days. This has resulted in us probably losing our hard to get ranking on web searches, in turn this means that now fewer people will be able to find us from a web search.
This week has been the worst time for me since running Psoriasis Club and I have handled a lot of problems in the past 8 years. But now for the first time I am asking our members if they can spend a little time to help Psoriasis Club. This request is not to help me, it's to help with the repair of all our hard work at getting Psoriasis Club where it is today. So please forget about me and think about how Psoriasis Club has helped you in the past, can you now help give a little bit of time back ?
Ok let's get down to business. Psoriasis Club has taken a big knock and search engines no longer like us, and genuine people with psoriasis may not trust our website because we have been sending unsecure messages. Obviously this is not helping our reputation, but they will not know it's of no fault of our own.
So can you possible spend a little bit of your time to do one or two of the following ?
#1 Log-in to the forum and see if you can answer some questions on the Health Boards or even welcome some newbies that have posted in Into's. Or can you update your own thread or comment on someone else's.
#2 Do a web search preferably Google for something that you know is on Psoriasis Club and follow the link, then spend a little time reading the Health Boards. *Dot not follow a link and leave quickly that will harm us.
If just a few of you tried one or both of the above it could help us restore our reputation. I appreciate that some of our members are not keen on my policies and would rather not log-in, but please try option #2 as you don't need to log-in and you will be giving a little bit back to others that were once in your position as a newbie.
Thank you.
Fred
Sneaky peek
We have an active Off Topic Board and we thought we would share some sneaky peeks with our lurkers.
Films to recommend Grizzly Bear wrote I've just finished watching " The Resistance Banker " . Why not add your favourite film to the list
.. here Fancy a chat?..... Well now you can join in one or start your own here Just general chit- chat great if you're not sure about posting ... I can guarantee a warm response THE CHATTING THREAD This thread is called "Things in your shopping basket "
"This month Turnedlight has given us another limerick ......
Downtime
The ps club forum went down
Leaving poor old Fred with a frown
But he fought night and day
Till the fault went away
And the forums still the best club in town ’
.
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.
Psoriasis Cure!
Stop Press
Kat has returned after a while away and updated her Stelara diary
Sorry I haven't updated this post in awhile, but life has a way of sneaking up on me. These past months have been a bit rough.
I had my injection in May and again in August. I feel like I'm "stuck" as I haven't noticed any improvement these past months, but it's DEFINITELY better than it was back in December!
My dermatologist is more pleased than I am with the results so far, I still have redness and some scaling. The rheumatologist said it takes a year to get the full benefit so I'm only about half way there.
So far though, it has definitely helped!!
Read more HERE
Portable Harmonium: The other day I was watching a video of Radie Peat playing the portable harmonium (aka Pump Organ). Though I had heard the instrument before being used by other musicians or on some track that just stuck in my head, I didn't know that much about it. So let's have a dummies quick guide of the portable harmonium shall we ?
For more thought of the days 
