Welcome to your March newsletter, I hope you enjoy reading it, it's packed again with information about what's happened in the last month , I would love more feedback from you subscribers saying whether you welcome it or even just delete it, let me know what you find interesting in it I want to give you all a newsletter you want to read but unfortunately the survey that went out with the January newsletter didn't get enough replies or comments to draw any meaningful conclusions
If you have a thread about your experiences what better time to come in and update your thread or if you don't have one and would like to start a thread about your treatment you can do that Here .
The off topic has been as busy as ever as we now have a games and quiz board where many of the existing games have been moved to and a few new ones added why not pop in and have a look Games and Quizzes Here
If you're a guest feel free to browse through the links here and join if you want to see more. Some off topic items may not be available for guests but all the health boards are
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 staff you will notice if you are a member that Fred is doing a survey, more about that later in the newsletter 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.
Jessica wrote Tremfya user's - pros and cons
Hello. I am posting a broad question but hope some of you can help. I'm now on Tremfya (after taking all else with no help and got all side effects - mostly upped respiratory infections.)
Psoriasis now is painful psoriatic arthritis and autoimmune issues such as lupus.
I started Tremfya on Sunday. I cannot lift my head from my pillow because of severe exhaustion!. When I do get up I have extreme lower back and leg pain.
I don't want to give up............ Read more here
FRP88 writes ....Psoriasis returns after one year on cosentyx.....Can I reload
Just a few weeks ago I was so optimistic with my Cosentyx treatment that I started a topic on whether or not I could reduce dosage from 300mg to 150mg per month.
I asked this here because I am using this under no supervision. (No biologics available in my country, local dermatologists google it right in front of me).........However....... . Read more here
JacG asks about Apremlast Otezla and lymphocyte count
Hi there, I have been on Otezla now for around 3 years and now have a Lymphocyte count of 1.0. I have no idea what that means other than I cannot be prescribed the recommended non biological. Has anyone else experienced this ? more here
Artemie writes about her journey on AIP Paleo diet and supplements
So, this thread is for everybody who wants to follow my new journey with trying to heal psoriasis through diet and supplements. Also for myself; to follow my progress.
After failing on both Humira ( depression, a much reported side-effect ) and Stelara ( floored for a week per month with heavy flu symptoms, not to mention recuperation time )
on the 22th of july 2019 I began leaving out nightshade foods ( tomato, peppers and potatoes ) and gluten ( grains, pasta ).
But I did eat a lot of ricecakes, nuts and seeds )
This is the Pagano diet; Healing Psoriasis the natural way. Supplements; slippery elm bark tea and Safflower Petal tea.
Lost weight quickly but the psoriasis didn't subside; it just got worse...... read more here
Fred Says Cosentyx failing
Ok back from my appointment and it's goodbye to Cosentyx.
It's been a good 3+ years, but it's now failing and the psoriatic arthritis is coming back. It's never been great for the psoriasis, but that too is getting worse.
Apparently the biopsy showed that the rash and little bumps are a possible mix of eczema and psoriasis. I've never had eczema before and we still are not sure, but we decided that because the psoriatic arthritis is coming back we may as well move on.
So my next try is going to be Tremfya.... Read more here
Better collaboration with rheumatology and Dermatology needed in psoriatic arthritis
The objective of the LOOP study was to evaluate the impact of clinical specialty setting on the time to diagnosis and treatment of patients with PsA. Clinical disease activity and disease burden were also compared between clinical settings.
LOOP was a cross‐sectional, multicentre, observational study conducted in 17 countries in Western and Eastern Europe, the Middle East, Latin America, and Asia. Adult patients (≥18 years) with a suspected or established diagnosis of PsA who were routinely visiting a rheumatologist, dermatologist or non‐rheumatology/non‐dermatology physician were enrolled. All patients were assessed by both a rheumatologist and a dermatologist..... Read more here
Anti drug antibodies in response to biological drugs
I was just reading Turnedlights comment about anti drug antibodies in response to biological drugs here: RE: Cosentyx for psoriatic arthritis Fred's journey and it's interesting.
I had often thought my body somehow just gets used to my current treatment and it stops working, but I never understood (and still don't really) exactly what was going on. But there is a lot out there about "Anti drug antibodies" and it does make some interesting reading.
Here is how I see it..... Read more here
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.
Each month we choose one of our members at random to answer 10 questions, this month it was Caroline *She decided 12 was better than 10
Q1: Do you class yourself as an optimist or pessimist ?
A1: Despite I see several things go wrong in the world. Despite I have bumped in to situations that are not honest towards people that I love and support, I do consider myself an optimist. In normal situations I am always smiling and am always in a good mood. And I will never give up but will keep searching for solutions and try to go forward.
Q2: Who do you miss the most ?
A2: My grandad. When we were young we were very often with my grandfather and mother. He was always busy with us, playing bike-football in the dunes or baking cookies or going to the playground nearby, telling always continuing stories when he brought us to bed. A really lovely man.
Q3: Ever broken any bones ?
A3: No. I did make some weirds bumps onto the ground while skeelering or skating, fell off tables, out of haystacks, you name it. There were really situations my bones should have broken, but they appear to be very hard. This sounds as if I am a very wild cat, but on the contrary I am a very sweet one.
Q4: What is the best part of the day ?
A4: Morning, the birds awake, the sun is coming up, the air is fresh, I really like that. (I like the night too by the way )
Q5: Favourite colour and why ?
A5: Blue. It fits very well with my eyes. Although I made a lot of dresses in many other colours, which also do fit well with them.
Q6: What would you like to be remembered for ?
A6: For being a nice person, who is ready to help other people, who is kind to everyone. I am not intending to invent something spectacular, that is not my thing.
Q7: What was you best job ?
A7: Barmaid at a camping site in France. I had never done it, it was heavy because it was the first time so long without my parents (I have great parents, and missed them terribly), there were scary Night butterflies over there in my caravan, but.... I did a very good job there. It suited me. Had everything under control. And...I met my hubby right there and then.
Q8: First thing you would do with 1 million of your own currency ?
A8: Do a donation for psoriasisclub, wherever the redaction is...
Q9:Do you believe in aliens ?
A9: Yes, there must be other (sensible) life in the universe. The universe would be a waste if we were the only ones. But...... do they visit us? Or do the laws of nature prevent that?
Q10: What do you watch on TV ?
A10: I do not watch much tv, but if, it is mostly NCIS or romantic movies. On Netflix I watch Gilmore Girls, Timeless, Grace and Franky, Virgin River, Marcella, Good girls.
Q11: Shower or Bath ?
A11: Shower I don’t like that my skin will get all bubbly from the water. It must be the phase right before one will melt.
Q12: What is your favourite saying ?
A12: If you don’t start leaving you will never arrive. And I mean that one should stop debating and start working or whatever, there is too much talk in clear situations.
If you would like to be next please send me a PM
Survey results: Last month I asked for some feedback about my column in this newsletter and the results are in. I didn't get as many replies as I would have liked, but by what I did get told me that you are mostly happy with the way I run my column.
A lot of you said the music quiz was too difficult and KatT said she would like to have a go at doing it, so she has set this months questions and we would be interested in your feedback. Maybe it would help if we set 5 questions each to give it a bit of a mix ?
I got a good idea of the genres and decades you like and though I can't please everyone it has given me a few ideas. And I was pleased to see that no one would mind if I kept throwing in some Blues.
The members music recommendations was the most popular and some commented that having the playlists available on Deezer and Spotify was a great idea.
Quiz Time: 1 point for each one you get right.
*Thank you to KatT for this months questions.
Associate the artist with the bird song.
*Watch out for my new thread each month where I ask for your recommendations. I also 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.
Quite a while ago I did a recipe for Ham cooked in Cola. See Cola Ham recipe here Having just done one in early February I thought I would share the perfect accompaniment to the Ham.
Braised Red cabbage.
So first off you will need a large oven proof dish with a lid. I use a big, heavy cast iron effort. Obviously you will need a decent Red Cabbage (about the size of your head), the dish kind of doesn’t work without one of these. You will also need a couple of Bramley Cooking apples and around 400g to 500g of onions. Don’t use eating apples, they just won’t cut it. Chances are they will be sweet, which is not what you want and they will just disappear when cooking. So start by finely chopping your onions. About 4mm square will do. Keep in a bowl and crush a couple of fat cloves of garlic on to the onions, just mix it up a bit to spread the garlic through the onions. Then peel, core and quarter you apples then hack into roughly the same size as your onions. Again keep these in a bowl but give them a splash them with some lemon juice. It will stop them from turning brown- a bit.
Now to build your dish.
Quarter the cabbage and finely shred / slice. Throw this into an even layer in your dish. Then sprinkle about a third of the onions and a third of the apples over the cabbage. Now we want a bit more flavour so a grind of salt and a good black pepper, a light dusting of ground cloves and the same of cinnamon. Then grate some nutmeg over and scatter a good tablespoon of soft brown sugar. Shred the next quarter of your cabbage and repeat the layering. Chances are you will get to the end pack your last layer of cabbage in and realise you have forgotten to dust with some spice or other. Don’t worry about it too much. Most of the spice is to taste and you will be surprised just how much it can take before it becomes a touch more than a subtle hint of flavour.
Douse the dish with two or three tablespoons of white wine vinegar, blob four or five knobs of butter on the top slap the lid on and whack it into a warmish oven say 150°C / 300°F / Gas mark 2.
Let it cook for 2 ½ to 3 hours or so you really really can’t ruin this by overcooking. You could make it the day before cook it to 2/3 the time and reheat when you need it. It also freezes very well, hence the big batch. We get around four double servings from this lot.
If you have done the Cola’d Ham, you can now smother it in marmalade, sprinkle with Demerara sugar, turn the heat up to 180°C / 350°F / Gas mark 4 and roast for 40 minutes or so until nicely coloured. The cabbage will sit nicely on the kitchen counter somewhere and still remain hot for quite some time.
We had rosemary potatoes with ours. Start by soaking 4 or 5 goodly sized sprigs of rosemary in some warm water until needed. The warm water will allow the aromatics to start to develop. Rosemary is a warm climate plant and has more flavour when warmed. The soaking helps prevent it from burning when cooked. Basically chop a couple of decent sized spuds into 12mm ½” cubes, par-boil for 5 minutes. The water Drain well, put in an oven tray liberally douse with oil a good grind of salt and pepper and two or three fat cloves of garlic very finely sliced. Throw the lot in the oven and roast for about an hour. Give them a good shaking up every so often through cooking so they colour up all round. About 15 minutes before the end add the rosemary sprigs and toss through the spuds.
And serve. So who wants a plateful?
Now I had to give this some thought for what to serve with it. Not too sure about wine possibly something German with bags of flavour, Riesling maybe? But I think a good Continental Pilsner such as Budvar or a really hoppy IPA St Austell Proper Job would do the trick nicely.
To read more recipes or add your own Click here
In May this year we will be celebrating Psoriasis Club's 10th birthday.
As many of you know if you read the newsletter Fred has a Q and A session with a member each month (see above )
Anyway this May we will be celebrating Psoriasis Club's 10th birthday so thought we could have Q and As about Psoriasis Club for the May edition.
So If you have any question you would like to know about psoriasis club ( i.e. How is it funded) just ask on the link below and Fred will choose 10 to answer for the May newsletter and the rest will be answered in this thread. Over to you
Im always pleased when members submit photos for use in the newsletter and each month our members can choose 1 image to show on the newsletter and I'm always pleased to add them
* All images are property of the member mentioned below the image.
See more members photos Here
Please remember no posts and no log-in for 12 months, your account will be deleted. For more information about this policy See Here!
NO PSORIASIS IS NOT CONTAGIOUS!
Contagious: A contagious disease is one that can be transmitted from one living being to another through direct or indirect contact. Thus the flu, which can be transmitted by coughing, and cholera, which is often acquired by drinking contaminated water, are contagious diseases.
Psoriasis: Is an autoimmune disease that can be passed on through genetic make-up, and can be triggered by injury to the skin, emotional state, illness, hormone changes, and some foods. Just because you have psoriasis does not mean your children or other family members will have it, due to it being in the genes.
So if anyone asks: You can tell them. No psoriasis is not contagious. It cannot be passed on by skin to skin contact, it is not found in air, water or food. It cannot be transmitted by insects, towels, pets, etc. you cannot catch it from a blood transfusions, or having sex.
It is impossible for any living thing to catch psoriasis. So don’t worry if we have just used that seat on the bus, don’t worry if you bump into us and notice our skin, you will be perfectly safe.
Oh and if you would be good enough to cover your mouth and nose when you cough or sneeze, we would be grateful. as we have a weak immune system and we don’t want to catch your germs.
You are welcome to comment HERE
*The following tips are from our members and not listed in any order of importance. We are all just people from all walks of life and have no medical training, but between us we have a vast knowledge about psoriasis, it's treatment and what it's like to live with it.
Read: You have Psoriasis, try to get some knowledge about your disease, it will make you a better partner for your dermatologist in order to find the best treatment for you.
Get a referral: Don't keep going to a General Practitioner (GP) who can only prescribe creams and ointments, if it's not clearing up ask for a referral to a dermatologist who has a full arsenal of treatments to help.
Tell: Tell your dermatologist all your problems not just about the skin, tell them how it affects your day to day life If you don't they will think you aren't bothered and possibly give you an inferior cheap treatment
Scams: Watch out for scams, there is no cure but you will find a lot of contradictions to that which are designed to empty your wallet and make the scammers rich. .
To see the full list of top tips Or if you have one to share Click Here
Turnedlights poetry corner
..Editors note ....Quite relevant with the current world health crisis I thought
The Octopus ..
When an octopus
Does it put on
Eight woolly sockstopus?
Or does it make less fusstipus
To wear a jumper with
To read more poems or add your own Click Here
This is proving a popular addition to the clubs
Why not come on over and have a virtual coffee and slice of cake and have a chat.
Click Here to enter
Here are a few random quotes from members of Psoriasis Club, they are taken from posts that are visible to the public and are all unsolicited.
"I feel better for being able to talk to people on here who are going through the same thing. - Sophiedophie"
"Thank goodness for people like you and forums like this - Imapsomom"
"I really appreciate having this forum - Hawklight"
"Thanks for the warm welcome - Kerry181175"
"I just wanted to say how grateful I am for the support you guys have all given me over the past few days - MarcusScone"
"I am so happy to find a support group where everyone truly cares. - SadieMae1"
"Y'all are so awesome with all the feedback. I don't feel so alone anymore. - SnarkyTexan"
"I stumbled across this wonderful forum searching for answers. - Bubbles"
"Glad to be here, this seems like a great group - Coffeeplease"
"Thanks to all the persons of this great forum - sunnyman"
"Thanks for the warm welcome - KatT"
"So glad I found this forum - GirlFromTexas"
"Thanks for the kind words my friends! It really means a lot" - EugeneHockey"
For more random quotes Click Here
There are lots of Myths about Psoriasis here are some of the most common ones
1: Psoriasis is only a skin disease. Fact: Psoriasis is actually an immune-system disease that causes abnormal growth of skin cells. A normal skin cell matures in 28 to 30 days and is shed from the skin's surface, but a psoriatic skin cell matures and moves to the surface in only three to four days, resulting in an excess of cells, which form raised lesions.
2: Psoriasis is the result of poor hygiene. Fact: Researchers have found no link between the disease and hygiene. Again, psoriasis is an immune-system disease; it can be triggered by various factors, including weather, stress, infections, skin trauma, and certain medications.
3: Psoriasis is curable. Fact: Psoriasis is a lifelong condition for which scientists currently have no cure. That said, the condition can be managed through proper treatment.
4: Psoriasis is easy to diagnose. Fact: Unfortunately, it can be difficult to diagnose psoriasis, and the disease is often mistaken for skin conditions such as eczema. In a National Psoriasis Foundation patient-membership survey, 48 percent of respondents stated that their psoriasis had been mistaken by others for a different disease or condition
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 Corprate Sponsors.
No Requests for Donations.
No Scams or Cures.
No Recruitment Posts.
No promotions or offers.
Just a small bunch of friendly people with psoriasis sharing information and support.
Active Member Count
KatT with 970
Raxyl with After 60 years Jack and Jill were sick of going up the hill and decided to visit an art gallery instead.
Jiml with 16/29
Jiml with D2
If you would like to take part in the next round or have a suggestion for a quiz See Here