Psoriasis Club Newsletter

March 2020

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.

This months stats

New Introductions

Please look at these introductions and come and welcome the new members that have taken the trouble to write an introduction.

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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

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Members Treatments, Questions and comments

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

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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

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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

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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

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Psoriasis News and other related items

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

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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

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Want more?

Q and A's with a member

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.

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If you would like to be next please send me a PM

Fred's Music Column

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.

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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.

Q1: Disco duck
Q2: Falling dove
Q3: I'm an Albatraoz
Q4: Black Crow Blues
Q5: Stool pigeon
Q6: Vulture
Q7: Woodpecker
Q8: Birds
Q9: The ugly duckling
Q10: The cranes are back

Answers
A1: Rick Dees.
A2: Crowded House.
A3: AronChupa.
A4: Bob Dylan.
A5: Kid Creole and the Coconuts.
A6: Iggy Pop.
A7: Chuck Berry.
A8: Coldplay.
A9: Danny Kaye .
A10: Paul Weller.

So how many points did you get ?

1. Why are you reading a music column.
2. Was it really that hard ?
3. Not bad but you must brush up on your music.
4. One more and you would be in the 50%s.
5. I'm impressed 50% is good.
6. Now you're cooking.
7. Well done I doubt many will beat that.
8. I take my hat off to you, I only got 6 and I knew the answers.
9. Was that luck or web searching ?
10. You really do need to get out more. Or get in touch and I'll let you do the next one.

Show Answers

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Members recommendations: Each month I ask our members to come up with a music recommendation on a theme. This month it's Birds
KatT suggested: Free Bird by Lynyrd Skynyrd
wooleyb suggested: When Doves Cry by Prince
Grizzly Bear suggested: Chirpy Chirpy Cheap Cheap by Middle Of The Road
Mrs Fred suggested: Surfin' Bird by The Trashmen
Raxyl suggested: Good Lord by Birds of Tokyo
D Foster suggested: I Hate Seagulls by Kate Nash
jiml suggested: Fireflies by Owl City
Turnedlight suggested: Spread Your Wings by Queen
Beverley suggested: El Condor Pasa by Simon & Garfunkel
JohnB suggested: Cuckoo Cocoon by Genesis
Caroline suggested: Birdy’s Flight by Peter Gabriel
Fred suggested: Like A Bird by Craig Erickson

Listen on: Deezer | Spotify

Show Recommendations

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*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.

Johnb's Recipe Spot

Braised Red cabbage

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.

It should look something like this

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.

Saluti!

To read more recipes or add your own Click here

Psoriasis Clubs 10th anniversary Questions and answers

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

Members Photos

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

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!