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Hi and welcome to your August Newsletter.....At last summer has arrived here in the northern hemisphere, although it hasn't come quietly it has brought some extreme long dry spells. Well it's perfect holiday weather and a lot of us have been enjoying getting some sun on our skin to help with the psoriasis control . it's been a quieter month for the club with less new members introductions but many members have been updating their threads If you would like to submit an article for the next newsletter, about anything you think might be of interest perhaps a holiday or a hobby you have then I would be pleased to consider it for publication .. Contact me or if you prefer any of the helpers 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.
If you have recently been diagnosed with Psoriasis or even if you have sufferered for years, members have been posting things they feel may help you cope, you can follow the link below to see more tips that members have posted
But here's a couple to start
Talk: Don't keep it to yourself. Share with your friends, family, colleagues and our members here.
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.
To see the full list of top tips Or if you have one to share
Click Here
New Introductions.
Please look at these introductions and come and welcome the new members that have taken the trouble to write an introduction. Just-Chris wrote ....... Hey y'all!
Been reading the up lifting post, and y'all are very supporting! I am having a very tough time atm. (Don't mean to bring anyone down) I lost my job with insurance and having a hard time with the pain. Really don't know what to do now. It's only 40% and growing. My legs look like a burn victim and my stomach is getting there. This isn't my first time by no means, but the most painful for sure. I have never been to the ER on my own free will. Should I consider it? I hate when people treat me, like I am a lost cause.
Read more here Moxtina wrote
Hi I'm Moxie,I've just joined, in part, to contribute and to document my oh so fresh Cosentyx journey .
Background: Diagnosed at age 18 with psoriasis; age 36 for PsA;
I also have Autoimmune Metaplastic Atrophic Gastritis (AMAG) and related Pernicious Anemia (PA), as well as Iron Deficiency Anemia (IDA) of Chronic Disease (as well as from monthly blood loss on account of having autoimmune related endometriosis)
A recent test that revealed I have a heterozygous MTHFR genetic polymorphism, lending evidence to my observations that I do not absorb nutrients properly from food or supplements, which makes sense, considering that I have AMAG, which means that the stomach does not manufacture enough acid to properly break down food, among other things, such as antibodies to the parietal cells, which are vital to conversion of intrinsic factor/B12
In addition to those awesome things, I have a weird form of either IBD or Crohn's that mainly affects the jejunem (which, incidentally, cannot be gotten to by endo/colon scopes) and the presentation is atypical. Recent endoscope showed lesions on my duodenum, basically, in layman's terms: my entire digestive tract is inflamed. This is pretty typical of Psoriatic Disease, from what I understand.
I also have Hashimoto's, Ankylosing Spondylitis, and some other stuff but I'm already boring myself.
Come and read more here Omgmoe write New here but not new to the gameG'day everyone !
Ive been on here for a little while however have just decided to post my first thread.
I've had arthritis since I was 18 (im 27 now). It was thought that I had rheumatoid and so I was put on Humira when I was about 20. It worked like magic for about 5 years. I forgot that I even had anything.
Unfortunately, after 5 years, it started wearing off and I also suddenly I developed psoriasis (which I think was probably due to the humira). So now my diagnosis is PSA
Come and Read more here
Members Treatments, Questions and comments . click on the links and see if you can help.
Vegetabba asks ....
Hi all, recently started Tremfya. Started my loading dose (Week 0 and week 4). It is currently week 8, my next/third shot would be week 12. Start week 7 until today, I have been having unusual headaches 24/7 with a sense of dizziness also. I am also more sleepy than usual. I was seen by a doctor after a week of symptoms, all my blood work came back normal and I had a CT scan of my head that was also normal. I see a neurologist in two days. I was just posting to see if anyone else had similar symptoms with Tremfya or other biologics? This medication cleared everything up. What Embrel and humira couldn't, Tremfaya did. However at a cost. These headache/dizziness are unbearable to be honest. Anyway, needless to say I will be quitting this med
Have you had similar experience Click Here jwilliams writes .... I'm about to start my first biologic for treatment of my very severe guttate psoriasis. My insurance company denied coverage for Stelera, so I'm trying Cosantyx. Anyone using Cosantyx specifically to treat guttate psoriasis?
Can you advise ..Click Here gama2956 wrote ....Hello everybody!
I'm really happy to find this community where people share experiences and support each other.
I have been diagnosed with psoriasis since 2014.
The areas I have been affected the most are my scalp, toe and finger nails and legs.
After going to 3 different doctors and trying different treatments finally one of them prescribed me Cosentyx. Last Wednesday I took my first 300 mg of Cosentyx and after 5 days I’ve seen results! Of course, I’m not all clean but the thickness of the plaque has decreased. In two days I’ll go for my second doses.
One of the things that bothers me the most about this disease are my nails, I understand that it will take time to grow nails that look healthier. Can’t wait to see more results. I’ll post here my experience with the treatment and If I have any issues I’ll let you know
Read more Here Filmbuff asks about anti-inflammatory foods .... Hi folks, I was wondering if anyone has any tips for foods that might possibly help alleviate the symptoms of PS. I heard that anti-inflammatory foods are best, but various websites I looked at don't seem clear on what to go for and what to avoid, and what they are, precisely. For example, one site said to avoid tomatoes, another that they were good. I read that vitamin D is helpful but a lot of sources seem to be fish based - I'm veggie, so a plant or dairy source would be good. Any tips, please, would be great, thanks
Can you advise ..Click Here Awesomeman asks for help with diagnosis ....As you may have seen in my past post Im having a lot of issues from side effects from the meds. The current situation that Im in has now happened almost exactly 1 year apart.
Basically 12 months ago my L elbow swelled out of nowhere. Was hot, reddish...Everything pointed to infection and we suspected cellulitis but the labs and fluid from my elbow were clean. Also there were no crystals or whatever so it wasn't gout. The fluid was not in the joint,so it can't really be drained. its just in all the tissue around my elbow. Its like a softbaball in my arm and has clear pitting edema. Took about 3 weeks to fully subside. Long story short a week ago, my R elbow swells up out of nowhere.....exactly the same as the last one, hot reddish, pitting edema etc. So at this point Im wondering if its Med related not environmental or infection. Since its unlikely gout or cellulitis. What do you guys think it can be? I appreciate any input or even guesses.
Last time it happened was on humira, this time is on simponi
Can you advise ..Click Here jopoh is starting on Cosentyx treatment ......Hello everyone, I am getting my first cosentyx jab tomorrow. Feeling both excited and slightly apprehensive at the same time. I have been having psoriasis for the last 20 years or so. Been on UVB the last 7 years but lately it's been losing its effectiveness. Am wrroied about the side efffects of cosentyx so any tips or advice would be very much welcomed.
Wish me luck !! Will post updates along the way!
Can you advise ..Click Here
Psoriasis News and other related items .
Depression Thread for members
I know several of us members signed up and said we were happy to help and chat with another member who had depression or anxiety issues . That was two years ago and things change. This note is just to see if those that signed up to monitor the thread were still wanting to be involved. If you would like to be kept on the list you must respond on the link below by the 3rd of August . If not we will assume that you are not monitoring the thread and remove your name from the first post
If you would like your name added to the list you could be added by registering your interest on the link below as well 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.
Thank you: First off this month I would like to say thank you to those that took the time to give some feedback about my column on the newsletter. Now I know there are a few people reading my ramblings I will be happy to continue with my efforts (that is as long as the editor (Jim) accepts my column each month)
So on with the show. This month I will be talking about Wallpaper ............ yes wallpaper. But first let's remember that August the 3rd 1963 was the last time the Beatles played at Liverpool's Cavern Club. After nearly 300 performances at The Cavern Club they had outgrown the venue and it was time to move on. But on that last evening for Nine Shillings and Sixpence you could have seen them perform live along with 5 other bands.
Ok as the quiz has been going down well amongst my readers I will keep it going.
Decades: Who recorded the album from the given year ?
1950s: In the Wee Small Hours.
1960s: Green River.
1970s Year of the Cat.
1980s Tango in the Night.
1990s Music Box.
2000s All The Right Reasons
1950s: In the Wee Small Hours - Frank Sinatra 1955.
1960s Green River - Creedence Clearwater Revival 1969.
1970s Year of the Cat - Al Stewart 1976.
1980s Tango in the Night - Fleetwood Mac 1987.
1990s Music Box - Mariah Carey 1993.
2000s All The Right Reasons - Nickelback 2005.
Back to the wallpaper.
Back in the early 70s in my teens I was lucky enough to live not too far from Cambridge in the UK. Every weekend we would get on our motorcycles (mine was a Triumph Thunderbird 650. No I wasn't a rocker, I just liked bikes) and head off to the City for a weekend of music and some illegal substances. We would spend the weekend there and let's just say "It was always a good Trip"
Cambridge was in those days known as one of the testing grounds around the country for up and coming bands or those wanting to try something different. Gigs were put on so the managers could gauge how well the band was going to go down amongst the music fans without getting too beaten up. They would also ask Andys Records ( "Purveyors of fine music at cheapo prices") what the people were asking for from his market stall.
Anyway back to the wallpaper. If you was in the know you could get a credit card sized piece of wallpaper from certain people or for offering you labour in setting up or stripping down after a Gig (you would probably say roadies today). Those pieces of wallpaper would get you free access to not only the Gig but sometimes if you were lucky enough access to behind the scenes and some free booze and food etc.
That little piece of wallpaper had no real monetary value, but it allowed you to get close and personal with some bands of the time. Most of those bands were on the way up, some would make it some wouldn't. But on the odd occasion you got close to a band that had made it and they wanted to try a new album before releasing it. There are far to many for me to tell you about, but I have seen some great bands close up and personal thanks to a small piece of wallpaper
My biggest regret is I never kept any pieces of wallpaper, I had a lot of them and to think I could have collected some well known signatures on the back. Just think how great my story would have been then. Oh well at least I still have the memories (well the ones I can remember after a good trip)
Oops I may have gone over my word limit, I'll try a shorter version next time.
Random Track: Sippie Wallace - Murder's Gonna Be My Crime.
See you next month.
Recipe Spot
Red Thai Fish Curry
This months recipe is from the Recipe thread and is from our member Raxyl ( Craig)
400ml can coconut milk, unshaken
2 tablespoons Thai red curry paste
650g skinless barramundi), cut into 3cm pieces
1 1/2 tablespoons fish sauce
3 teaspoons brown sugar
4 kaffir lime leaves
1/2 cup small fresh Thai basil leaves
1/4 cup small fresh mint leaves
2 tablespoons deep fried shallots
Sliced long red chilli
steamed basmati rice, to serve
Heat a wok over medium heat.
Spoon the thick top layer of coconut milk into wok.
Add curry paste. Stir-fry for 3 to 5 minutes or until oil separates and floats to the top.
Add fish and the kaffa lime leaves and turn to coat.
Add remaining coconut milk and bring to the boil.
Reduce heat to medium-low simmer for 5 minutes or until fish is just cooked through.
Stir in fish sauce and sugar. Cook for 1 minute. Stir in basil leaves, mint and chilli.
Top with deep fried shallots and serve with rice.
To read more recipes or to add your own
Click here
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Drought 2018
Caroline wrote ...... Up to now our dryest summer was 1976, which I of course can’t remember as I was not there.
But since yesterday 2018 is the dryest summer since the measurements began.
When I go outside I walk into a heated blanket. It is hot, hot, hot. 33 degrees where I live. I have had higher temperatures on vacation, like 35 to 36 degrees, but then you can dive into the swimming pool of the camping and you are fresh again. As I don’t have a swimming pool in my garden, my sister has had one shortly, so I will not have that refreshment.
In the Netherlands is it code orange. Instead of pumping out the water from our low lying polders, now sweet water is being let in to provide for water for the fields. A special pump installation, normally never used, has been switched on and pumps 6900 litres of water per second in the direction of the polders in the west of the country. The higher parts of the Netherlands suffer most of the drought, as it is not possible to float that with water, as you know water will not flow upstream. (This may be a revealation so some of you )
From other countries, Greece, Japan, we also hear devastating messages.
If this takes too long, we will have to leave the planet.
Longing for some rains...
How are you all doing?
We have an active Off Topic Board and we thought we would share some sneaky peeks with our lurkers.
Things to do when the lights go out Things like Find a candle . and
Tell ghost stories .. Read more here By far the busiest thread in the off topic section is the " Last person wins " thread Many members have joined in at being the last person to post to win a prize......but there's always someone ready to knock you off last spot
So why not click on the link and have a go.....it's a great ice breaker and I guarantee you'll smile Last Person wins The Bar Why not pop in for a virtual drink to the bar, it's one of the most popular places in off topic
There's a ready supply of non alcoholic and alcoholic drinks as well as coffee and a pleasant environment for a chat ohhh and the coffee pots always on ... Come on in
Poetry section
Turnedlights poetry corner ..
"This month Turnedlight has given us a limerick ......
The Duck
The duck she went out for a run
Enjoying the bright morning sun
She managed a waddle
And then a short joggle
Then puffed, she announced ‘I am done’ .
Author Turnedlight
Sunflower Competition 2018
.. There's been a lot of activity on the thread this month with members posting pictures of their effort why not log in and have a look Sunflower Competition Here .
THOUGHT OF THE DAY
If you don't pass your values on to your kids, someone else will.
Each month I will add a tip or a helpful link to assist with your posts ..
Updating your profile
To change any of your details in your profile you need to go to your user control panel .there you can add a profile picture ,change your listed medication or to add your own avatar picture and add a short bio about yourself if you wish
iUser Control Panel
Should you get stuck or need help just ask a member of the forum team who are always pleased to offer assistance
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Fred has updated his Cosentyx for psoriatic Arthritis thread and wrote Just over three months now on the three weeks between shots and it has been a little better for the psoriasis but not a huge difference. I'm still using the diprosone for the odd bit when I feel a flare up coming, but I think I would be just the same back on the 4 weeks.
But three more months to go, so I will carry on for now.
I'm very pleased to say that the psoriatic arthritis is still keeping away, that was my main reason for switching to Cosentyx so yes I'm pleased.
Read more HERE Schnauzerlover updated her cleanse and diet log And wrote .....Hello everyone,
I have been plodding along here, sticking to my meal plan, keeping the psoriasis at bay. I have been finding ways to add sweetness to my diet, such as herbal (raspberry, mixed berry, blueberry, red zinger) iced tea, sweetened with stevia. Having a glass to two after/during meals adds a nice sweetness to cut all the savoryness of most my meals. Also, my yogurt flavored with lemon or key lime and sweetened with stevia is a nice treat after lunch. Also water, with squeezed lemon and stevia, is a refreshing bit of lemonade. Those treats help get me through the monotony of savory city.see full update here
Thank you: First off this month I would like to say thank you to those that took the time to give some feedback about my column on the newsletter. Now I know there are a few people reading my ramblings I will be happy to continue with my efforts (that is as long as the editor (Jim) accepts my column each month)
How are you all doing?
..
