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Hi and welcome to your March newsletter, here in the Northern Hemisphere we are getting well into spring and the days are getting longer and a bit warmer ..We have been very active on the forum again with lots of new members joining and some posting threads, I enjoy compiling the newsletter as I see many of you logging in and answering questions, or saying hi to new members to make them feel comfortable ...... I'm sure it is appreciated and reflected in their responses ...your contributions help to keep the club an inviting and a friendly place to come. The off topic boards have again been very busy with lots of interesting subjects discussed ..I have put links to some of the new threads later in this newsletter ..
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This Months Stats.
19 New Members | 44 New Threads | 2270 New Posts | 4 Newsletter subscriptions
This months new members
Olga - Alex2#KA - graceN - Bincy4776 - peggy51 - Swannieq - Nostalchiq - Wayno - Cassa - thebutcher - OPete71 - Kcwilson - Penny55 - KieranC79 - Justineclare - Clear30 - sama - AnnaNZ - Travis-707
New Introductions.
Please look at these introductions and come and welcome the new members that have taken the trouble to write an introduction. usedtobecool wrote ...., .
The reason I decided to post is that Ive been battling with this soul swallowing , life ruining monster since I was about 48 (and now Im 55) on my own as far as financially. I would pay cash to see a derma and he would give me samples since I was on a budget and I only had it on my knees and elbows a little bit but it never for 1 minute stopped its slow but sure progression........Read more here Busy bee wrote .....Hello everyone, I am new to this forum and new to psoriasis although it is in my family ....
Come and read more here Tanlou says ....I lost you all - but have found you again -jeez a lot has happened
Come and say welcome back here Clear30 writes ....Hi all feeling fed up, psoriasis back after 30 years. Used Dovonex for 6 weeks now, spots getting bigger on hands,arms and legs, elbows starting to clear though.
Read the rest here
Members Treatments, Questions and comments . click on the links and see if you can help.
AmandaL asks about Stelara infusions As of today I have increased my stelara from 45mg every 12 weeks to 90mg every 8 weeks more so because of my crohns.
I was collecting my injection today and they mentioned that the initial dose for crohns is a stelara infusion generally around 325mg.
It made me wonder though, why do they not do this for psoriasis?
Read More Here Turnedlight is just musing
I wonder if they will end up combining bios? I got taken off Humira because my skin didn’t improve, but I realised after it may have been helping my aches and pains. So how about a bit of Humira and a bit of something else!...Read the rest here Swannieq asks about Tremfya side effects ... Hi, I’m a newbie to these groups so I’m hoping that I post this in the right area. I’ve had psoriasis probably 50 years now and I think I’ve had every treatment known to man. Right now I am taking Tremfya and I am almost 100% clear. I also had fabulous results with Stelera, but my dermatologist said Tremfya is even better. However I did my third shot a week and a half ago and I’ve had diarrhea now for nine days
See if you can help here Nostalchiq writes ....Can't afford Clobetasol, looking to go natural ....Hello, everyone. I'm new to this forum and I thought that I'd reach out to my fellow psoriasis sufferers and see if I can get some advice on how to deal with an issue that has recently come up.
I had to quit my job a few months ago due to depression and anxiety. Because of this, I have lost my insurance which wasn't good for much, EXCEPT for paying for my clobetasol solution that I used for my scalp psoriasis.
I don't know how many of you have used this medication, but in spite of the warnings that steroids are not good for you, I couldn't stop using it completely. I've had psoriasis since early childhood and I am now 31, so I have been squirting this stuff on my scalp for most of my life now. Back when I had more money I did purchase at least $100 worth of essential and carrier oils in order to create a natural treatment that I had learned about online, but it didn't do anything except for make my hair oily.
I am on my last insurance-funded bottle of clobetasol and I think I only have about a day's worth left in there. I have been going as long as I can stand without it,.......
.........Read More Here Spot on asks about Handheld UVB units ..Has anyone tried a handheld NB UVB unit
I have just bought a Duralume2X handheld unit for my scalp psoriasis, The seller bought it and used it twice, then found out she had scaring
. .........Read More Here KyPrincess wrote .... I have been put back on Enbrel. I was on it for 10+ years before it stopped working for me a few years ago I was on Humira. And over a year ago on Cosentyx. I haven't been on anything for a year. So I'm concerned that Enbrel might not work this time around
....
Read more here
Psoriasis News and other related items .
1 Year risk-benefit of subcutaneous methotrexate for psoriasis...This study set out to assess the effect of an intensified dosing schedule of subcutaneous methotrexate in patients with moderate to severe chronic plaque psoriasis.
Read the rest of the thread here Carotid -IMT may benefit from bio & Methotrexate in psoriasis patients This study assessed the effect of systemic and biological drugs on psoriasis patients carotid intima-media thickness (IMT).
......... Read more about it Here Enstilar there is no generic version Having been prescribed Enstilar by my dermatology department, and given a letter to take to my doctor so he could issue it ....I was surprised when I opened the package to have been given Dovobet gel..... I queried this with the pharmacy department who assured me that it was a generic version Had I not been a member here I would probably accepted thatRead more here Deaths from fire ...I have just watched a local programme called Inside Out in which 40 people in UK have died from fire through using emmollient creams like Cetraben , Diprobase and that type containing paraffin . The latest was recently in Beverley were a person with psoriasis was smoking in the lounge watching tv after using the cream just burst into flames and died later in hospital with over 30% burns, no warnings are on the containers at all, this is a widespread problem that I have never heard of.
.Read More Here Kyntheum could soon get NICE approval .
Brodalumab 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.
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.
........Read More Here Cosentyx 5 year efficacy and safety study ...
Secukinumab, a fully human monoclonal antibody that selectively neutralizes IL-17A, has been shown to have significant efficacy and a favorable safety profile in the treatment of moderate to severe psoriasis and psoriatic arthritis.
The objective:
To assess the efficacy and safety of secukinumab through 5 years of treatment in moderate to severe psoriasis........Read More of this study Here Lily presents new data on Taltz and Mirikizumab...
Quote:
Eli Lilly announced that it will present new data for Taltz® (ixekizumab) at the American Academy of Dermatology (AAD) annual meeting taking place Feb. 16-20, 2018, in San Diego, Calif.
The data include eight abstracts for Taltz, featuring two oral presentations highlighting patient-reported outcomes from a Phase 3 clinical trial evaluating Taltz for the treatment of moderate-to-severe genital psoriasis, as well as findings from the Corrona Psoriasis Registry on Taltz patient clinical characteristics and treatment history. Two abstracts evaluating the efficacy and safety of Taltz for the treatment of active psoriatic arthritis will also be presented.
Additionally, Lilly will present Phase 2 efficacy, safety and patient-reported outcomes data for mirikizumab in moderate-to-severe plaque psoriasis.
Read More Here FDA accepts new drug applicationof Jedmel ...
Ortho Dermatologics, a division of Valeant Pharmaceuticals International, Inc. today announced that the U.S. Food and Drug Administration (FDA) accepted the New Drug Application for JEMDEL™1 (halobetasol propionate 0.01%) (IDP-122) lotion with a PDUFA action date of Oct. 5, 2018. If approved, JEMDEL will be the first high-potency topical steroid treatment for plaque psoriasis with dosing for as long as eight weeks. In the clinical trials, the most common adverse event was upper respiratory tract infection. ..Read More Here Burden of chronic urticaria relative to Psoriasis in Europe...
This study looked at the burden associated with chronic spontaneous urticaria (CSU) vs Psoriasis (PsO)
..Read More Here Otezla efficacy and compliance in real world setting...
This study looked at the efficacy and compliance of psoriasis patients treated with Otezla (apremilast) in a real world setting.
Quote.......Apremilast is a novel oral phosphodiesterase-4 inhibitor approved for psoriasis treatment. Randomized trials have documented its efficacy and safety, but data on real-world patients are scarce.
..Read More Here Enthesitis in psoriatic arthritis ...
This study looks at the association between Human Leukocyte Antigen (HLA) genetic susceptibility markers and sonographic enthesitis in psoriatic arthritis (CSU) vs Psoriasis (PsO)
..Read More Here Stelara effective at reducing aortic inflammation ...This study suggests Stelara (ustekinumab) may reduce the risk of heart attack and stroke.
An antibody used to treat the skin disease psoriasis is also effective at reducing aortic inflammation, a key marker of future risk of major cardiovascular events. Researchers from the Perelman School of Medicine at the University of Pennsylvania, in collaboration with the National Heart, Lung, and Blood Institute, led a randomized, double-blind, placebo-controlled study and found patients who took the drug ustekinumab had a 19 percent improvement in aortic inflammation, as measured and confirmed by imaging, when compared to the placebo group.
..Read More Here Biomarkers to detect Psoriatic Arthritis ...This study suggests biomarkers are better at detecting psoriatic arthritis than C-reactive protein (CRP) levels alone.
There is a high prevalence of undiagnosed psoriatic arthritis (PsA) in patients with psoriasis. Identifying soluble biomarkers for PsA will help in screening psoriasis patients for appropriate rheumatology referral. We therefore aimed to investigate whether serum levels of novel markers previously discovered by quantitative mass spectrometric analysis of synovial fluid and skin biopsies performs better than the C-reactive protein (CRP) level in differentiating PsA patients from those with psoriasis without PsA (PsC).
..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.
JohnB's Recipe Spot
Proper Pea Soup
This is my all time favourite soup it sticks to your ribs as it goes down. Just the job for a chilly days lunch – and it never lasts long.
Ok so there are a couple of ways of attacking it, but first thing to do is to soak your dried peas (Marrowfat) in cold water overnight, I normally do a 500g bag. I like barley in mine so I add a couple of handfuls of barley to the soak.
And so on to the stock. A couple of ways here you can either use a rack of pork or bacon ribs or a nice meaty gammon knuckle, either is good.
In a large pan add a couple of litres of cold water, a large quartered onion and potato (this takes the saltiness of the gammon away just in case it is), a couple of carrots halved, a stick of celery and a half dozen pepper corns and a bay leaf.
Add the meat which ever you are using and bring to a gentle simmer for an hour. Skim off any crud that forms on the surface as you go along.
Remove the meat and set aside. Remove the veggies and bin them. Make up the stock to about 3.5 litres with boiling water. Drain the peas and barley (if you added barley) and throw them in the stock along with a large, very finely diced onion. Bring to the boil and cook, just off the boil for 45 mins to an hour until the peas having escaped their skins are still recognisable as a pea – but only just. They should have turned in to a luscious mush, the pea and the soup a nice thick consistency. The soup should be thick. Really thick. Thick enough to float your spoon on but not quite thick enough to slice.
If you have used ribs, cut the racks down into individual ribs and whack them in an oven at 180C – 350F – Gas Mk 4 until they are as you like them. I normally give them ½ an hour or so I like mine just crispy. Serve with a sharp pointy stick as a side dish with the soup. The stick you will need to stab anyone who tries to steal your portion of ribs.
If you have used a knuckle, carve all the fat off it and remove the meat in chunks, (so you can see it in the soup) and add to the soup.
Serve with a good crusty rustic bread, a nice cob or my preference a sourdough. What beverage I hear you ask? Not a clue - but I would hazard a guess an IPA would help wash it down, failing that there is always the never ending fall back – a steaming hot mug of Tea
I have had this in Caroline’s neck of the woods, they tend to throw small diced carrot into the mix and sliced sausage as well. The sausage was reminiscent of those rings of smoked pink goo ones you get in pre packed in plastic in supermarkets. It does work quite well though.
.
JohnB
To read more recipes or to add your own
Click here
Jim's Q and A's
This month we will try something new a Q&A session with a member so we can all learn of each other’s interests this month Fred has agreed to be Guinea Pig
Fred I have read of your polytunnels on the forum can you tell us what got you interested ?
We were already growing a lot of our own vegetables, but felt we could extend the growing period with a polytunnel. After a bit of research we found it would not only give us a longer growing time but also less chance of problems with pests and diseases.
Was it a difficult thing to set up?
It came with good clear instructions and they made a point of saying on the first page "To take your time" The hardest part was removing the turf and digging the trench to bury the cover in. (You can get ones that don't need burying, but I wanted to make it as stable as possible) All in all it took around 3 days using basic DIY tools.
What do you grow in them ?
It's easier to say what we don't grow in them as we have been experimenting with a new one especially for winter veg. So far the only thing we have found that does better outside are Brussels Sprouts, Climbing and French beans, Main crop potatoes, Sweet corn, Peas and Courgette.
What is your favourite crop ?
Oh that is a difficult one as there is nothing better than picking fresh and having it on your plate in half an hour. It also changes with the seasons, but if I had to pick one it would be the little Charentais Melon. Going in there on a hot sunny day and picking a fresh warm melon is amazing.
Does growing vegetables actually save you money ?
Yes it does. A polytunnel framework will last forever and the cover will last well past 10 years (spend good money and fix it in well and it will probably last 20 years). We did work it out last year and even taking the cost of the polytunnel spread over 10 years and adding on the cost of seeds, water, etc it's costing around €2.50 per week for vegetables through the whole year.
What gives you the greatest pleasure ?
I take it you mean from the polytunnel. That's a simple one. Eating fresh vegetables the moment they are picked and knowing how they have been grown.
Do you sell any excess to your needs ?
No we have got it just about right now on the amount we grow. If we do have any excess we give it to friends or compost it.
What advantage is there over growing in open ground?
By playing with the ventilation it creates a consistent environment. Also it's pretty much bug and disease free, the rain can't wash things away, animals can't get in, no wind damage and you get a longer growing period. We pick our last tomatoes at the end of November and our first potatoes around April.
Tell us more about your garden and polytunnels.
We have two Polytunnels 3m x 6m and a raised bed 1.25m x 25m for all our vegetables. We also have some fruit trees, asparagus, strawberry and raspberry patches all in around 1000 Sq Mts.
Would you recommend it to anyone with a large garden.
Yes. I would also recommend getting a polytunnel for even a small garden. You would be amazed at how much you can grow in a small space with a polytunnel. Biggest tip I could give would be to buy bigger than you think you need and don't buy cheap.
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Members photos.
This month we see the first signs of spring .
Why not log in and see more
A carpet of Snowdrops See more pictures here If you would like your photos featured let me know and they will feature in a future newsletter
Sneaky peek
We have an active Off Topic Board and we thought we would share some sneaky peeks with our lurkers.
Related image association Caroline has started a thread
Because of the popularity of the thread Related word association, it might be nice to have an alike thread but then concerning images. This is going to be a little more complex and you need some more creativity and a camera, but as all our phones have camera's this cannot be a real problem
Come in and see more of the images posted
Don't clean the fridge Fred wrote ....We decided to give the fridge freezer a good clean out last week and all was well till this morning when we found the freezer part had stopped working. Luckily we managed to get everything in the chest freezer before it had thawed out.
Following the success of this thread . Sunflower Competition I thought we should have another go.
Usual rules apply. You grow, steal, beg, photograph, make, etc a sunflower.
The best part of this competition is that we are all winners, so let's look at last years entry’s in the thread and see who won.
Sideways Sunflower = Jim
Thinking about having a go = Caroline
Almost got one = Grizzly
Cheating git = Mrs Fred
Plastic entry = John
My neighbours are better than anything I could grow = Turnedlight
Maybe I should try next year = Brenda Belinda Glenda
For her 40th birthday, my wife said, "I’d love to be ten again." So that Saturday, we had a heaping stack of chocolate-chip pancakes, her favorite childhood breakfast. Then we hit the playground and a merry-go-round. We finished the day with a banana split.
"So how did you enjoy being a kid for a day?" I asked.
"Great," she said. "But when I said I wanted to be ten again, I meant my dress size."
There is a selection of psoriasisclub photos you can use in your posts if you wish, so why not come in for a bowl of soup ....
See more of them Click Here
Then just enter the code in your post to use them
Hints and tips
Each month I will add a tip or a helpful link to assist with your posts ..
Personal Notepad
Did you know as a member of Psoriasis Club you have a Personal Notepad?
To access your Personal Notepad click "User CP" in the green menu bar when logged-in, then scroll down and there it is. Put in your content and click "Update Notepad"
Your Personal Notepad can only be seen by you and is not seen by other members (but please remember it is stored on the forum database) the database is protected, but it wouldn't be wise to include personal information like bank details etc just in case!
You can make changes as and when you like. It's handy for keeping notes about your treatments and what is working, or maybe make a note of your next rendezvous. or just put a note in to remind yourself to buy me cake for my birthday. See more about it here
Need Help If you are wondering how to do something on the forum and aren't sure how to, whether it's post pictures, link to another post or how to use codes in post, or even how to reply to a post ..you will find the answers ........Here
Should you get stuck or need help just ask a member of the forum team who are always pleased to offer assistance
Something a bit different from me this month. I'm often told I don't stray far from the Blues but here I am listening to something I would probably list as being Folk or even just a nice voice telling a story.
Cusp by Alela Diane is an album that paints a picture of Motherhood (not something one can easily get away with for a whole album) but she has pulled it off and you will get sucked in by her brilliant song writing and gentle voice. In her own words she says about the album. "There is not a big place in the music industry for 30-something women with kids making music. Maybe we can create that space.”
My top three from the album are:
Moves Us Blind
Ether and Wood
So Tired
Male or Female you should give it a listen. It's not all babies but more of a story about life, something we have all been through. Alela has one of those voices that just grabs you and her song writing skills paint a picture we can all understand, you can see the story unfold as well as hear it.
Following the success of this thread .
