Welcome to your October newsletter The September edition went down very well. So thanks to those of you that choose to log in and comment .
We are still not getting seen in search engines as much as in the past but we are still attracting new members that are contributing to the club, so I would like to thank those new members for joining the club and helping to keep it active .
If you're a guest feel free to browse through the links here and join if you want to see more. 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 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.
Coffeeplease wrote ....
.Hi everyone! I'm happy to have found this forum while doing a google search for natural remedies. I was diagnosed around 1983 (about 10 years old) with a generic "psoriasis" diagnosis. In the beginning it covered both of my legs. I don't recall at the time if they gave me any treatment? That was thirty some odd years ago....
In my twenties it emerged again on my scalp, a spot here and there on my arms, elbows, back, stomach. Using various natural and over-the-counter lotions, creams, and sunlight/tanning beds have kept it pretty under control and felt very fortunate .... Read more here
KatT wrote ..Hi.
Found this site while browsing for information on biologics. I have been diagnosed with plaque psoriasis , (which is hereditary in my family,) 25 years ago and psoriatic arthritis (the first in the family) 10 years ago. Wow, writing this down makes me feel old!
Started on biologics 2 years ago because of the arthritis. I was tired of being in pain. Still am!
I am on Cosentyx which pretty much cleared up my psoriasis, but my rheumatologist just increased the dose as it wasn't doing anything for the arthritis. Hope it works!.... Read more
GirlFromTexas wrote ...Howdy
I’m not really a cowboy, it’s just an avatar. I’m really a middle aged urban Texan (having lived in NYC, LA, Wash DC, San Fran, as well as Houston and various DFW ‘burbs.), although I have Tx cred via various relatives. Diagnosed with psoriasis as a teen, and PsA at midlife. It ebbs and flows, and I am not entirely certain any of my meds are doing much to control it. So glad I found this forum, because I don’t know anyone else who has it, that I can talk to, who understands....... Read more
Looks like another drug has failed due to diarrhoea.
I tried Oteza. It was working but the longer I was on it, the worse my diarrhoea got. I am now on Skilerence. Only got to 2x 120mg tablets a day. No way will I get to 6 a day. Horrendous stomach pains at times, but the diarrhoea is now bad
Very limited what I can take due to high blood pressure . Read more here
Howdy - Currently on Cosentyx for 4 months, generally feeling better yay!
But having sudden sharp mental decline. Can still recite and analyze passages from Chaucer and Shakespeare no prob (retired Engl Lit teacher) but cant remember to lock the front door when I go out, turn off the coffee pot, pay bills on time, and recently had a “spell” where I was driving to a dr’s appointment, got confused, then lost, and ended up driving all over town for an afternoon - didnt know where I was going, or why, or where I was, or how to get home. I have lived in this same small town for 20 years!
Has anyone else experienced mental confusion while on Cosentyx? It is not listed as a side effect. Or could this be something else? Read more
Kerry181185 wriote ....Skilarence skin looks worse
Hi all, I’m new to the forum. I started taking Skilerence three weeks ago and Ive worked my way up to 120 mg per day so far. Side effects are ok at the moment. A bit of skin irritation but only lasts 10-20mins so bearable. The only thing is that my skin looks worse! Is this something that can happen? Does it look worse before it gets better or does it take a while to kick in if it works?
Skilerance is a great drug and works but the side affects for me on 120 mg is not bearable.
I've tried it with food and yogurt, I've even cut the tablet in half and hid it in a soft sweet and swallowed half in the morning and half late afternoon but the cramps i get and sweats and going red is crazy.
I need to inform my dermatologist but after being on methotrexate and cyclosporine, I don't now what other options I have.
Any suggestions would be welcome as i'm sure you all know how i'm feeling. Read more
edinburgh78 writes Cosentyx severe GI side effects
Hi.. Ive been searching this place and also the inspire page in the US and although GI / diarrhea is a listed side effect there doesnt seem much else on it: Novartis is stating it cannot cause IBD... it can only bring it on if the person had it already but I have seen one person on this page and another in the US who did not have it before, and do have it now.
I think I fall into this category... the pain started on my second monthly dose after the 5 loading doses...I was doing really well until then and the GI issues were severe: severe diarrhea for a week with severe cramping.. this lasted a month, now I am on anti ulcer meds which help a little with pain but the pain was across the whole system from stomach down to colon. though mostly upper. Read more here
Could images help in psoriasis diagnosis in parts of China
Psoriasis is a chronic inflammatory skin disease which holds a high incidence in China. However, professional dermatologists who can diagnose psoriasis early and correctly are insufficient in China, especially in the rural areas. A smart approach to identify psoriasis by pictures would be highly adaptable countrywide, and could play a useful role in early diagnosis and regular treatment of psoriasis. Read more here
Taltz sustained high efficacy over 4 years
This study evaluates the efficacy and safety of recommended ixekizumab (IXE) dose over 4 years (204 weeks) from UNCOVER‐3 study.
UNCOVER‐3 was a randomized, double‐blind, multicenter, Phase 3 study wherein patients with moderate‐to‐severe plaque psoriasis received placebo, IXE 80 mg every 2 weeks (Q2W), IXE 80 mg every 4 weeks (Q4W) (both IXE groups had 160 mg starting dose), or etanercept 50 mg twice weekly. At Week 12, all patients switched to IXE Q4W dose for the long‐term extension (264 weeks). After Week 60 and at investigator's discretion, patients could receive dose adjustment to IXE Q2W. The efficacy endpoints at Week 204 were percentage of patients achieving PASI 75/90/100, sPGA score of 1 or 0, and those achieving PSSI=0, NAPSI=0, and PPASI 100. Efficacy data were summarized through 204 weeks using as‐observed, multiple imputation (MI), and modified nonresponder imputation (mNRI) methods. Read more of the study here
Tremfya update (Update)
This update is from the Tremfya thread and tells of the application to the FDA for approval to cover psoriatic arthritis and later will be applying to the EMA for European approvalRead 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.
Each month one of our members gets invited to choose from a wide range of questions and give answers to 10 of them. This month it was Turnedlight
What is the best part of the day ?
What would you like to be remembered for ?
You think people are going to remember me?
What's top of your bucket list ?
Probably hugging a lion but that would be the last thing I do so I’m saving it.
Do you have any pets ?
I have always had pets - cats, hamsters, rats, the spiders in the corner of the room, unicorn.
Your biggest achievement was ?
Getting this far through life.
What did you have for breakfast today ?
I had scrambled eggs and bacon - yum.
How do you relax ?
I probably don’t properly relax, though watching films or reading can take my mind off things.
Do you know the words to your national anthem ?
I’m not American if that’s what you mean.
What would you like to see invented ?
Transmat device so we don’t have to spend hours in cars.
Do you play any board or card games ?
I like scrabble but struggle to get anyone to join in.
Who will it be next month ? Nominations on a postcard.
Caroline's Comments: Some of you may have noticed Caroline always gives a comment on each of the members music recommendations. I think she may have started a new trend as Myself and Craig also had a go and it's interesting to see the difference in opinions of music.
Going by the feedback I get about my music column the members recommendations is probably the most popular part, so I have decided as long as a few of you keep taking part I will keep it going. It would be nice to get a few more choices and the recommendations is open to all members, so keep an eye out for my thread and who knows you may end up sharing something others have missed.
Will you be listening to this months members music recommendations below and giving some feed back in the Newsletter Thread ?
Three albums I will be trying this month:
All Mirrors by Angel Olsen
Colorada by Neil Young and Crazy Horse
The Livelong Day by Lankum
Quiz Time: 1 point for each one you get right.Q1: Which band were also knows as "Sigma 6" "Meggadeaths "The Abdabs" "Screaming Abdabs" "Leonard's Lodgers" "The Spectrum Five" and "The Tea Set" ?.
Members recommendations: Each month I ask our members to come up with a music recommendation on a theme. This month it's "Flying"
*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.
It’s gone 12:00 and has been a hideous and frustrating Friday morning and I know now the afternoon is just going to be a world of pain. I’m late for my lunch, still need to wash my hands, take my overalls and body harness off and make the regulatory phone call to Mrs John to let her know she can’t claim my pension just yet. The call eventually turns to me asking what would you like for tea? The replay; “I don’t know, no you decide! I’m not cooking”. Arrrgghh!! Just what I need. I know I’m going to be working later than I would like and if I had known I would have taken something out of the freezer to at least give me a fighting chance.
So I get home and have a peruse in the fridge and as is normal for a Friday there is not much exiting in it. A half a red bell pepper, a bunch of spring onions (scallions) that look like they have seen better days and half a dozen manky mushrooms. Ooo a pack of Parma ham that is about to expire. How on earth . . . . . . Hang on I seem to remember there was some rice in the freezer! Ahh a lightbulb moment . . . Fried Rice!
John B’s Emergency Fried Rice
So first off ping - sorry microwave the rice to defrost. Don’t let it get warm. The rice needs to be cold/ before you start frying it or the texture comes out all wrong (and NEVER use just cooked rice – that’s even worse). Thinly slice the spring onions, crush a couple of cloves of garlic and if you have any finely grate a couple of teaspoons worth of ginger. I always have some in the freezer, it’s also easier to grate when it’s frozen. Hack the red pepper into 5mm chunks and clean and thinly slice your mushrooms. Separate the ham into slices and cut into 6mm wide ribbons across the slice (although any ham or bacon will do just as well).
Get your Wok and heat it until it is smoking hot then wait another minute before adding your oil. Always use a good Ground Nut or Rape Seed oil. Never use olive oil, corn or vegetable oil – they can’t stand the heat and will burn. Also never use the low calorie spray oil – actually never use it at all. Over the weekend of writing this Mrs John was looking into buying a new frying pan as the one she used was starting to fail, the non stick coating was becoming somewhat non stick and missing in places. The salesman told her he had had several instances lately where manufacturers were no longer honouring ‘Lifetime Guarantees’ on non stick cook wear where the owners had used the Low Cal sprays. Apparently there is something in their chemical make up that degrades and eventually strips the non stick coatings. So beware! Only use natural stuff!
Sorry where was I. Oh yeah, by now your pan will be smoking like an old Scouse Docker so roll the oil around your Wok with a deft flick of the wrist to cover as much of it as you can. Now throw in your spring onions, garlic and ginger in and cook on a full heat for a few moments. Keep the food in constant motion or it will burn and burnt garlic is nasty. Add the pepper and mushrooms and Parma Ham and cook for a few more minutes. You can add a handful of frozen peas (for colour) if you wish. The rice can go in now. Season with a little white pepper (no salt) and carry on stirring for about 5 minutes. If you want at this point you can add an egg. Crack it into a glass just in case. This is where the Wok comes into its own for this type of cooking. Pull all the rice up the side of the wok all around it to create a clear well in the middle. A little bit at a time drop some egg in cooking quickly and shredding it as you go until its all in and cooked. It wants to look like a halfway house between an omelette and scrambled. Thoroughly mix this through the rice then give it a good sprinkling with light Soy Sauce and mix it all up again. Once the dish is piping hot a nice option is to drizzle over and mix in some sesame oil and serve immediately.
As this was an emergency dish I had not really put much thought into what to have with this beverage wise but I suppose you could not go too far wrong with a nice warm Saki but I think it would be more appropriate to make a nice fresh pot of green tea to swill it down with.
Just be aware if you made this with rice that has been frozen please do not freeze this dish or leave it overnight for later. Rice develops a toxin from the bacteria on it that does not break down when reheated and it can make you extremely unwell.
Yes you can use a large frying pan if you don’t possess a wok but it may find it will not get as hot as a wok and non stick surfaces can be badly damaged by overheating. Treat yourself to a Wok a nice cheap carbon steel job. Don’t waste your money on a non stick – they are rubbish. Nothing will stick to a correctly seasoned wok. If anyone wants to know how to look after their wok or season a new one I could post some tips.
Right then - who’s turn is it to wash up??.To read more recipes or add your own Click here
We have an active members photo section on Psoriasis Club and each month our members can choose 1 image to show on the newsletter. This month the theme is Gardens or Flowers
* 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!
It can be a big shock when you get diagnosed with psoriasis and it is a life changer. So I thought it would be a good idea to compose a list of tips from those of us that have been living with it for a while and pass on our top tips to the newly diagnosed.
*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.
Under arm deodorant: Make sure that your deodorant contains no alcohol.
Moisturiser: Use raw virgin coconut oil it has natural healing properties in it too.
Instant relief: Keep a bottle of your favourite moisturiser in the fridge. The cooling really helps with the irritation.
To see the full list of top tips Or if you have one to share Click Here
Turnedlights poetry corner
I hug you and say goodbye
With each step your brave face receding
The summer slips quietly away
With the weather,
warmth and easy smiles
Your mask back on
Your best foot forward
Your friends await
To read more poems or add your own Click Here
Your Help Needed
It was mentioned in the off topic section of the club that we have a bar for those that enjoy a virtual drink after work or a sociable chat in the evening
But it was suggested we had a virtual coffee shop as well, the members thought it a good idea and we had a bit of space next to the bar, so work has started preparing it
Here's where your help is needed. Turnedlight has started a poll to decide on the name for the coffee shop and we would like you to vote for the name you think would be best
To vote or add a comment Click Here
For more thoughts of the day or to add your own Click Here
Adding Photos to your posts
If you want to add an image to your post click the "Insert Image" button 9th from the right in the new post/thread window it's next to the smily. A small window will pop up where you can add the URL address of the image. You will have to have your image hosted to enable posting and there are various hosting sites
There are a few different tutorials to help, depending on whether you are using a pc, tablet or phone do give it a try and believe me it's easier than it sounds follow the link below to learn moreSee here for more
Should you get stuck or need help just ask a member of the forum team who are always pleased to offer assistance Forum Team
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