Hello Guest, Welcome To The Psoriasis Club Forum. We are a self funded friendly group of people who understand.
Never be alone with psoriasis, come and join us. (Members see a lot more than you) LoginRegister
Hi and welcome to your April Newsletter it's been busy again this month with a lot of activity with some great posts in the health boards and a lot of new posts in the off topic section..It's been a year now that we have had this format in the newsletter and I often wonder what you think of it, if you think it's to long, or the format needs adjusting I welcome any feedback and only want to put in here things you as members want to see .. I look forward to seeing some of you on the boards either updating your threads or saying hi to new members or even pop in for a chat here Chatting thread
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.
28 New Members | 46 New Threads | 1556 New Posts | 5 Newsletter subscriptions
This months new members
Kate - jacobdb - Gordon - Falcon491 - yossi_321 - irumudikkilli - Pauli - eisenhartd - araorun - Goob-805 - vicki - bchogue - Kdteacher - FRE1FRED2 - Christine-Walford - Duncan - pfcain53 - kisfej - Wendy - Boxerinb - schnauzerlover - Mick54 - Janice Y - VinnyBags - TRNew - ahtram13 - Adam-Broomfield -stephmtl -
New Introductions.
Please look at these introductions and come and welcome the new members that have taken the trouble to write an introduction. Beverley said I've not visited for a while..... , didn't realise it's been over 3 years since I visited here .
The last time I was trying fumerderm. It didnt work for me. Tried Humira, then enbrel. Both with some success. Switched to Stelera and have been almost psoriasis free since that time.
Been overweight all my life and last May I underwent a gastric bypass operation. Had to stop the Stelera for a while, but only suffered a small outbreak. Since then have a couple of tiny patches. Unfortunately one is on my face. Gone from over 16 stone to under 12. ........Read more here Falcon491 wrote Hi everyone. Last Summer was when I noticed something wrong with my skin. The Dr. at that time said I had Ringworm. So for months, we were treating it like it was fungal. It only got worse. I finally went back to the Dermatologist and he said it was not fungal and that it was Psoriasis. I noticed my osteoarthritis flaring up as well. He told me it was due to psoriasis. I have what looks like ringworm on steroids on my scalp, ear canals, around my waist, my down under parts and legs. He sent me in for a blood test. Come to find out I have latent TB! Ugh! ....
Come and read more here araorun writes Hi all,
I'm a 36-year-old type 1 diabetic who was diagnosed with psoriasis in my late 20s, I want to say by 2008 or 2009 I for sure had it, because I had my son in 2010 and I had it then. But that was actually before I was diagnosed with type 1 diabetes. After I had my son, my pancreas just stopping working and my psoriasis got worse. It started on my legs, then I had it on my scalp. Since then I've had it on my elbows and in and around my belly button. Not good, but manageable, somewhat.
Over the years I've noticed it pretty much was in the same spots, and at times it would get better, but the past month or six weeks, it's grown. Drastically. It's now on my forearms, ribcage, lower back, upper right shoulder and one spot on my upper thigh. I can't wear anything but long-sleeved shirts because it is so hideous. My child leaves the room when I change clothes and not because he's giving me privacy--because it's so awful to look at. I would say it's doubled in the areas its affecting at least.
The worst part is, I just started a new job and I have no PTO. Despite that, I had to stay home for two days with my son who had the flu and I had to take off a half-day Monday to let AT&T into my house to connect my wifi as I just moved. Monday afternoon, the company owners called me in and said I was pushing it. I had planned to tell them I needed to see a doctor asap, but after learning my job was on the line, I didn't.
Come and Read the rest here Hi I'm Duncan and live in the U.K. ..and have had Psoriasis for 8 years.
It started after taking a drug to stop smoking. My sister took the same drug and shed a full body of skin. The drug was shampix. My wife is a midwife and though asking people, found a definite link to both.
I started with one small patch on my arm. I now have patches everywhere. I had a large burn scar on my calf which it loves.
I tried all the creams with minimal success, I was then put on light treatment. It did just start working as treatment ended. You are only allowed so many treatments, even though the exposure was low due to me burning.
I was then offered the drug, but I am leaving that as the last resort. Side effects of drugs aren't good with me.
I am using Enstilar spray, as it absorbs easy. I find it less greasy than Dovobet. I also use Dipsalic as an alternative. They all contain betamethasone.
Everywhere I read, they say don't use Dovobet long term
Read the rest here Adam wrote a quick intro .... Hello all, My name is Adam Broomfield.
I've been suffering with psoriasis since 2008. I've had my fair share of treatments like most of you probably have.
The treatments I've tried so far are:
UV sessions,
Dovobet,
Revitol,
Various moisturizers, and
Methotrexate
I'm currently on Acitretin. I've been on it for roughly 2 months now. There is no visual change at the moment. I have one more month on this treatment before I'm back to the dermatologist.
....
Read more here
Members Treatments, Questions and comments . click on the links and see if you can help.
Pauli asks I would like to know if anyone has used a really good cream?
I have used lots in the past such as coal tar based,aqueous, e45 etc! probably most of them.
I am new on here and this may of been discussed before.thanks
Can you help? Click Here SherylYYZ writes of her experience with taltzHi everyone, I’ve suffered from psoriasis for at least the past 20 years - it could be quite mild at times but then would come back with a vengeance. I used to cover my legs and arms in makeup and would cry in embarrassment when going to the hairdresser.
I tried every topical treatment but relief was so temporary. Phototherapy also provided some short-term relief but I felt I was going to be saddled with this for the rest of my life.
I had been wary of some of the biologic treatments because of the side effects, but I was getting desperate.Then I happened to see a TV ad for Taltz and asked my dermatologist about it. He said it was clearly the most exciting new treatment he has seen - with very little risk - so he signed me on for a clinical trial.
...Read the rest here yossi_321 says ... Hi everyone,
I want to get a tattoo related to psoriasis. I know it might affect my skin but i really want to. Is there an international official symbol of psoriasis?
See if you can help here Painintheguttate asks...... Has anyone had experience of online GP's ?
.........Read More Here Vicki asks about dealing with cold symptoms from Cosentyx ..Greetings from New Jersey - land of extortionate property taxes and horrific commutes.
I have been taking Cosentyx for five months.
In that time I am constantly exhausted, and have cold symptoms including sore throat, nasal congestion, headaches, and fatigue. Is anyone else out there having these issues, and, if so (and more importantly!) how do you deal with them?.........Read More Here araorun says .... Had some good news ( see introduction above) I've got a referral to a rheumatologist ....
Read more here Schnauzerlover started her Psoriasis "Cleanse and Diet Log " ....Hello everyone. I have had psoriasis for about 4 months now. It was isolated to my eyelid for the first three months, but here lately it has appeared along my hairline, my chin and now my other eyelid is inflammed. After doing some research I believe this popped up due to my getting a yeast infection from bathing in a bath tub. I always take showers, but I thought I would give a shot at a "detox bath," and unfortunately for me the bath tub must have not been clean. Right away I started having symptoms of a yeast infection. I haven't had one for over 20 years, but when you get one, you know it immediately. At the time I did not realize the correlation, but at some point after that, my eyelid starting flaring up. I thought it was a reaction to make-up, but I hadn't made any cosmetic changes. The skin started to peel off so then I started thinking it was something else, which led me to psoriasis.
My research has led me to conclude that the yeast infection went "wild" (candida) compromised my gut, giving me leaky gut, allowed pathogens into my bloodstream, which were then emitted via my skin and caused psoriasis. So therefore my goal is to kill the candida, heal my gut and hopefully the psoriasis will go away
....
Read more here JaniceY wrote ....
Hello everyone, I’m new at this so I might get it wrong so bear with me. I’ve been reading about the Methotrexate, I was given the leaflet yesterday by the derm, I hadn’t seen her before but I originally went to say I would start the Fumaric acid Easter’s, I think that’s spelt right . I came home and researched Methotrexate and I didn’t like the side effects it gave ie, stay out of sun, very little alcohol and also hair thinning or loss!, my hair isn’t very thick any way so I don’t want that added embassesment. Can anybody throw any more light on this please?.
Read more here
Psoriasis News and other related items .
This study looks at Pharmaceutical care in German patients with psoriatic arthritis
Psoriatic arthritis (PsA) is an inflammatory joint disease. Despite numerous health care research studies, there is hardly any data regarding the current state of pharmaceutical care of PsA patients in Germany
Read the rest of the study here Desoximetasone gets FDA approval for psoriasis .
Lupin Pharmaceuticals announced that it has received final approval for its Desoximetasone Topical Spray, 0.25%, 30 ml, 50 ml, and 100 ml from the United States Food and Drug Administration (FDA) to market a generic version of Taro Pharmaceuticals U.S.A Inc.’s Topicort Topical Spray, 0.25%.
Lupin’s Desoximetasone Topical Spray, 0.25%, 30 ml, 50 ml, and 100 ml is the generic equivalent of Taro Pharmaceuticals U.S.A Inc.’s Topicort Topical Spray, 0.25%. It is a corticosteroid indicated for the treatment of plaque psoriasis in patients 18 years of age or older.
......... Read more about it Here First stromal vascular fraction in psoriasis This could be a Great Leap Forward in the treatment of psoriasis ( in my opinion)
This is a study of the first-in-man intravenous implantation of stromal vascular fraction in a patient with severe psoriasis.
Stromal vascular fraction (SVF) is a mixture of adipose-derived stem cells/mesenchymal stem cells, endothelial/progenitors, pericytes, fibroblasts, and other cells obtained from fat tissue. A small sample of fat or adipose tissue can be obtained under local anesthesia using a cannula. After an enzymatic digestion and centrifugation, the adipocytes (fat cells) are removed to obtain an SVF. Here, we describe the rationale and, to our knowledge, the first clinical implementation of SVF intravenously in a patient with severe psoriasis.
Read more here Ilumya gets FDA approval for psoriasis ...
Sun Pharma today announced that the U.S. Food and Drug Administration (FDA) has approved ILUMYA (tildrakizumab-asmn) for the treatment of adults with moderate-to-severe plaque psoriasis who are candidates for systemic therapy or phototherapy.
ILUMYA selectively binds to the p19 subunit of IL-23 and inhibits its interaction with the IL-23 receptor leading to inhibition of the release of pro innflammatory cytokines and chemokines. ILUMYA is administered at a dose of 100 mg by subcutaneous injection every 12 weeks, after the completion of initial doses at weeks 0 and 4. ILUMYA is contraindicated in patients with a previous serious hypersensitivity reaction to tildrakizumab or to any of the excipients.
.Read More Here
This study suggests using short term narrowband ultraviolet B (NB‐UVB) can benefit the effect of Fumaric acid esters (FAE) in the treatment of psoriasis.
Fumaric acid esters (FAE) are safe and effective in patients with moderate‐to‐severe psoriasis but have a slow onset of action. A short‐term combination with narrowband ultraviolet B (NB‐UVB) may substantially accelerate the therapeutic response in the induction phase of treatment.
........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.
Jim's Q and A's
After last months success chatting with Fred in Q&A session, this month John has agreed to being grilled I understand you are an engineer from what I deduce from your posts, What made you go into engineering ?
I grew to dislike school in my last couple of years and having to do A levels would have crippled me. The money was also calling, I have always liked making things so it was an obvious and natural choice.
Do you get job satisfaction? ... I know as an engineer myself solving a difficult problem can be very satisfying
Absolutely. On the whole I have enjoyed nearly every day. I have been party to some stunningly interesting jobs, but more over my apprenticeship gave me the tools to become rather adept at DIY. I have saved myself a fortune over the years.
If you had your time again would you still make the same career choice ?
No. I originally wanted to get into electronics, but I ended up in a branch manufacturing initially - this has given me more than electronics ever could.
I know as well that you enjoy travelling ...what's your favourite destination?
Oooo thats a hard one. The Big Kid in me loves Florida - BIG rides and sunshine what's not to like? I think though just for the sheer spectacle Dubai just about has the edge. It would be far easier to say where I haven't liked.
Top of the list Morocco. We did a 2 centre Marrakesh and Agadir. Flew into Marrakesh for 4 days, 3 days hassle in the Souq too many. We then took the local bus to a weeks stay in possibly one of the worst hotels I have ever stopped in. Anyone ever stayed in a hotel that searched your bags each time we entered? They would confiscate items such as water, crisps etc. Water outside the hotel around 70p a litre, inside the same stuff £5. Needless to say we didn't spend a single coin in that wretched hole.
The second one is Cape Verde its just like like Mars - except Mars is better - at least it has an atmosphere Have you any further plans for this year ?
Sure do. Just got back form Iceland it was brilliant. Next on the list is Monaco for a long weekend. Then its a spell on Corsica. We have been fortunate to win Court 1 tickets for a day at Wimbledon so its off up to London for Strawberrys and cream - and the odd cheeky Pimms.
We are contemplating our next jaunt, but that will be a lot later in the year.
There is a big wide world out there and we want to see as much of it as possible while we can afford and still have a semblance of good health
Another thing you seem to enjoy is shows and concerts is this a thing you have always done
I did a lot of Rock Concerts in my youth. Nazareth at Preston Guild Hall was my first.
It did drop off when Mrs John and I got our first house, but has seen a resurgence in the last 5 years or so.
What is your favourite show ?
I really enjoyed seeing Genesis at Blackpool in the early 80s, the Duke Tour if I remember correctly. As for Stage shows I think The Jersey Boys has been the best musical.
Thanks for that insight John if anyone has more questions they might like to ask the ask threads are all here ask threads
.
Fred's Music Column.
This month Jim is letting me trial a bit more room on the newsletter. I'm enjoying doing my music column each month and I try to give a bit of a mix, but sometimes it's difficult to settle on just one album review. So this month I'm going to review 6 new albums in the hope that I can give a bit of variation.
Obviously I can not please everyone as there are some genres of music that I'm just not into, so if you don't like my choices I'm sorry but you could always ask Jim if you can have your own column. If a larger column works I will look at doing other things about music and not just new album reviews, so read on and let me know what you think.
Joan Baez - Whistle Down The Wind: Wow! this is one you have to listen to if you like Joan Baez, I would go as far as to say it's one of her best. At the age of 77 she has said this is her last album, if you don't know or even like her you should still give a listen to the last chapter of her great career.
Jimi Hendrix - Both Sides of the Sky: I'm a big Hendrix fan, but I do wish they would stop scraping the bottom of an empty barrel. This is music that Jimi never authorised and it's a shame that people keep turning this stuff out. Don't bother listening to it, find the stuff he would have wanted you to listen to.
Sue Foley - The Ice Queen: Here's another you must give a listen to. Yes I know it's mostly Blues but give it a try and you will find a mix of blues, country and jazz both electric and acoustic. I'm not a big fan of covers but I did like her version of Bessie Smith’s 1927 “Send Me to the ‘Lectric Chair”.
David Byrne - American Utopia: As usual Byrne is taking some risks in his music and sometimes just as you think it's not working it switches you back to the 80s and the days of Talking Heads. I can see this one being a like or hate type of album. At first I was hate, but after a couple of listens I now like it.
Gus Spenos - It's Lovin' I Guarantee: I'll leave you with a bit of Swing and a quote from Gus Spenos: "I don’t much care if I sacrifice commercial success for the fun of playing and making the listeners feel good" Give his album a spin at the weekend, you will enjoy it.
Well that's it from me for this month. I hope you enjoyed this months column. Please do leave a comment good or bad Here and let us know what you think as it will help us decide if it's worth me continuing with a larger column each month or go back to a small one. Happy Listening.
JohnB's Recipe Spot
Bigos or Hunters Stew
Right this months epicureal delight my not be high on everybody ‘to eat’ list, but I would recommend give it a try, you may be surprised.
Its called Bigos or Hunters Stew, a hearty Polish dish that is warming flavoursome and comforting. Just the job this chilly Easter.
So raid your pantrys for the following
50g (2oz) Butter
2 Large onions peeled and roughly chopped
950g (2lb) jar sauerkraut
2 tins peeled tomatoes
1 small white cabbage (7" or 8"ish) you should see the size of a normal Polish white cabbage.
300mm (½ pint) beef stock
250g (9oz) sausage such as Kielbasa or Wiejska hacked into authentic rustic slices
short rack of pork ribs (6 or 8) split into individual ribs
Couple of Bay leaves.
1 Teaspoon of caraway seeds.
Down to business then,
First off quarter your cabbage remove the core and shred it finely.
In a large pan throw your butter in and fry off the onions until they are a nice golden colour. In the meantime rinse your sauerkraut in plenty of cold water and drain well and add it to the onions. Add the tomatoes to the pan and break them up a little. Throw in your cabbage, caraway seeds, stock and bay leaves give it a good stir. Whack in the sausage, ribs and golden syrup and simmer for about an hour on a low heat.
So to serve – crack yourself a couple of eggs and make yourself an omelet. .......Sorry chaps this isn’t tonight's dinner. It has to be left overnight to develop its flavours. Just leave it on the stove top with a lid on.
The following night warm it through again on a low light for an hour and give it a good stir. Trust me you cannot overcook this!
The Poles I know have this with a big pile of plain boiled potatoes or a big dollop of mash. Personally I’m not overkeen on either Boiled spuds (unless they are nice new potatoes) are tasteless and mash is just like hot mushed up cardboard sick to me. So I prefer a good big bowl full and a couple of chunks off a rough brown loaf.
Serve with, well its blindingly obvious – it can only be a well chilled Polish Vodka. By chilled I mean straight out of the freezer. My favourite is a Spelt Vodka called Orkisz.
Smacznego!
This is one of those dishes that if you asked 100 people for a recipe you would get 200 answers. Feel free to add whatever meat takes your fancy, Rabbit, Venison and cubes of Pork Shoulder work well. Some add mushrooms, junipers and even dried prunes. It is a very flexible dish. Oh and it freezes really well.
.
JohnB
To read more recipes or to add your own
Click here
Twitter
If you want to follow us on Twitter you can find us here: @Psoriasisclub
If you're a member of Psoriasis Club and follow us please let us know and we will follow you back.
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!
Members photos.
This month Caroline has been out in the cold and photographing the progress of the Flower extravaganza, Keukenhof in the Netherlands .....it's been slowed down by the really cold weather in Holland, but the first pictures are looking promising .
Early Keukenhof pictures Log in to see the latest pictures from Holland 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.
Isn't wildlife great Fred wrote There are moments in time when wild life just reminds you how great life is. Since moving into the village a couple of years ago we missed the wild life that we lived with at our other place.
That strange sound of the Deer walking past your bedroom window and giving out a bark in the early hours of the morning. Or the Nightingale driving you crazy with his song all night long. And those Frogs when they used to start up in the spring, wow the sound was deafening. And how can you forget the sound of the crickets ? It was like living in a quadraphonic speaker.
Oh sorry, where was I ? ............................... Ohhhh you'll have to come in to read... more here Dandelion Fred wrote ..I was just reading about dandelions in thread Referral to Rheumatology came through And was thinking why we say it makes you wet the bed
As reported in last months newsletter the competition ( for fun) has begun . Sunflower Competition It's time to sow your seeds now, but protect from frost if there's one forecast.
Usual rules apply. You grow, steal, beg, photograph, make, etc a sunflower.
The best part of this competition is that we are all winners, take a look at last years entry’s in the thread and see who won
See more here
...
Clean Jokes
MEANWHILE BACK AT THE ASYLUM
...a visitor asked the Director how to determine whether or not
a patient should be institutionalised?
'Well,' said the Director, 'we fill up a bath; then we offer a teaspoon,
a teacup and a bucket to the patient and ask him or her to empty the
bath.'
'Oh, I understand,' said the visitor. 'A normal person would use the
bucket because it's bigger than the spoon or the teacup.'
'No.' said the Director, 'A normal person would pull the plug.
Now, would you prefer a bed near the window?'
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 ..
Adding a photo to your avatar and profile
Want to be different to everyone else and have an Avatar (Photo in your profile and posts ?)
Click "Control Panel" in the green bar just below the main menu, then Under your profile on the left click "Change Avatar"
A Google search for "Avatars For Forums" should find you something. or you can use your own photo, If using your own the site will shrink them to avatar size
Still not sure ask away, we would rather you have an avatar as it makes you different. See more about it here
Using Quotes If you want to quote another post or something from off the forum ( be careful, no spam) this tutorial will show how Fred wrote.....I have noticed some of you are having problems and not sure how to use them .....here's a little tutorial to show you how.
Beverley is feeling good so thought she would share
Read more HERE Bill has updated his "Topical Experiment thread" As I am taking a break from systemic treatment, I thought I might try some topical, Here are the ingredients: best to read from the start see full thread here CCarr has updated her thread "Fumaderm to Methotrexate switch" read more
Alan540 has been religiously updating his thread and staying clear on diet ....see Here
Martin222 is off Otezla and had to wait till 6 April to start Stelara ....read more to find out why Here
This month Jim is letting me trial a bit more room on the newsletter. I'm enjoying doing my music column each month and I try to give a bit of a mix, but sometimes it's difficult to settle on just one album review. So this month I'm going to review 6 new albums in the hope that I can give a bit of variation.
As reported in last months newsletter the competition ( for fun) has begun .
