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Psoriasis Club is a friendly on-line Forum where people with psoriasis or psoriatic arthritis
can get together and share information, get the latest news, or just chill out with others who understand. It is totally
self funded and we don't rely on drug manufacturers or donations. We are proactive against Spammers,
Trolls, And Cyberbulying and offer a safe friendly atmosphere for our members.
So Who Joins Psoriasis Club?
We have members who have had psoriasis for years and some that are newly diagnosed. Family and friends of those with psoriasis
are also made welcome. You will find some using prescribed treatments and some using the natural approach. There are people who
join but keep a low profile, there are people who just like to help others, and there are some who just like
to escape in the Off Topic Section.
Joining Couldn't Be Easier: If you are a genuine person who would like to meet others who understand,
just hit the Register button and follow the instructions.
Members get more boards and privileges that are not available to guests.
OK So What Is Psoriasis?
Psoriasis is a chronic, autoimmune disease that appears on the skin. It
occurs when the immune system sends out faulty signals that speed up the
growth cycle of skin cells. Psoriasis is not contagious. It commonly
causes red, scaly patches to appear on the skin, although some patients
have no dermatological symptoms. The scaly patches commonly caused by
psoriasis, called psoriatic plaques, are areas of inflammation and
excessive skin production. Skin rapidly accumulates at these sites which
gives it a silvery-white appearance. Plaques frequently occur on the
skin of the elbows and knees, but can affect any area including the
scalp, palms of hands and soles of feet, and genitals. In contrast to
eczema, psoriasis is more likely to be found on the outer side of the
joint.
The disorder is a chronic recurring condition that varies in severity
from minor localized patches to complete body coverage. Fingernails and
toenails are frequently affected (psoriatic nail dystrophy) and can be
seen as an isolated symptom. Psoriasis can also cause inflammation of
the joints, which is known as (psoriatic arthritis). Ten to fifteen
percent of people with psoriasis have psoriatic arthritis.
The cause of psoriasis is not fully understood, but it is believed to
have a genetic component and local psoriatic changes can be triggered by
an injury to the skin known as Koebner phenomenon. Various
environmental factors have been suggested as aggravating to psoriasis
including stress, withdrawal of systemic corticosteroid, excessive
alcohol consumption, and smoking but few have shown statistical
significance. There are many treatments available, but because of its
chronic recurrent nature psoriasis is a challenge to treat. You can find more information
Here!
Got It, So What's The Cure?
Wait Let me stop you there! I'm sorry but there is no cure. There are things that can help you
cope with it but for a cure, you will not find one.
You will always be looking for one, and that is part of the problem with psoriasis There are people who know you will be
desperate to find a cure, and they will tell you exactly what you want to hear in order to get your money. If there is a
cure then a genuine person who has ever suffered with psoriasis would give you the information for free. Most so called cures
are nothing more than a diet and lifestyle change or a very expensive moisturiser. Check out the threads in
Natural Treatments first and save your money.
Great so now what? It's not all bad news, come and join others at Psoriasis Club and talk about it. The best help is from accepting it and talking
with others who understand what you're going through. ask questions read through the threads on here and start claiming
your life back. You should also get yourself an appointment with a dermatologist who will help you find something that can
help you cope with it. What works for some may not work for others
Posted by: Fred - Sat-27-07-2019, 10:38 AM
- Replies (4)
With the current heatwave I have noticed the little bit of psoriasis I have on my shins is itching a lot more. I notice it the most when I go outside and when I come back inside it seems to calm down. I've never really thought about it before, but this heatwave is definitely making it itch more.
Anyone else noticed a difference to psoriasis in hot weather ?
Posted by: Kat - Tue-23-07-2019, 20:19 PM
- Replies (5)
Just curious if anyone has ever heard of this.
I keep seeing an ad for it. It states that it's FDA-approved Psoriasis Laser Treatment. It also says that in clinical trials, most people saw at least 75% improvement and even 95% clearance in just 4 weeks.
It says the psoriasis can come back (well DUH!) but that you can have treatments again.
Upon further reading, it's basically UV treatment but directed right on spots where there is psoriasis. I guess it's been around for awhile but I've never seen it discussed so was just wondering.
Hi all and thankyou in advance for a great website.
I have been on a lot of different medicines and just started on Skilatence which is the way I found you.
I look forward to reading your experiences and look forward to share with like minded people that know what it is like to suffer and survive this illness.
Posted by: sunnyman - Sat-20-07-2019, 11:58 AM
- Replies (84)
Hi There all !
I'm Marco from Italy , 46 years old.
I'm fighting with psoriasis since 1984....
I have taken Neotigason for many years ( last ten years ) and this year after a blood check i have stopped it definitively.
Triglycerides and high ferritin inside liver. Hepatic Steatosis reversible.
I knew the side effects of Acitretin....
This week on wednesday i have started Skilarence and i will tell you my experience. First 3 days no side effects.
Two weeks ago i have started a diet to lower triglycerides and help liver. No alcohol.
My psoriasis is only on the legs and elbows , for luck nowhere else.
Let's hope.....
Posted by: Fred - Wed-17-07-2019, 16:36 PM
- Replies (1)
Scotland are starting a three year dermatology project thanks to an £8.5 million EU funding.
Quote:
A Glasgow nurse is leading a project across Scotland aimed at improving dermatology services including Greater Glasgow and Clyde.
The project, which aims to develop a range of nursing education and training resources designed to help standardise clinical practice, is part of ‘The Co-operation and Working Together (CAWT) Acute Hospitals Services Project’ and has received funding from the European Union (EU).
Approximately £8.5 million has been awarded through the EU’s INTERREG VA Programme, managed by the Special EU Programmes Body (SEUPB) as part of a three-year dermatology project which links into the Scottish Government’s Modern Outpatient Programme.
The project is an initiative which aims to minimise unnecessary hospital visits and ensure that patients are seen by the right person, in the right place, at the right time.
Two dermatology improvement nurses, one from Glasgow and one from Tayside, are leading the project in Scotland and are being supported by the Modern Outpatient Programme.
Over the three years of the project, the nurses will test and evaluate new methods of working, run practical clinical sessions, and develop training materials to help support and educate dermatology nurses in the future.
Health Secretary Jeane Freeman said: “This project will help us to further develop dermatology services across Scotland’s NHS, helping to reduce waiting times and improve patients’ outcomes. I look forward to seeing the results.”
Dr Fiona Macdonald, the Modern Outpatient Programme’s Clinical Lead for Dermatology, said: “Dermatology nursing and specialist nursing has been a core part of Dermatology for many years.
“Dermatology is a specialty with a huge demand and is also a significant part of the Primary care workload.
“It is essential that all nurses qualifying over the next few years have a general knowledge of core aspects of Dermatology, but we also need to acknowledge and plan for future vacancies due to retirement and so on, as well as expansion where it will be appropriate for the service.
“This project will help us to establish the training that is required and to consider how we address these training needs.
“The nurses have mapped out the existing dermatology services for every NHS Board in Scotland, and will use their findings to determine what kind of skills nurses will need in the future.
“At the end of the project, we want to be able to provide a programme of basic dermatology training for all nurses; specialist training for dermatology nurses; and advanced training at degree or masters level for highly qualified nursing specialists.
“Developing a common set of training materials will help us to standardise and enhance training for a range of clinical professionals, and will help patients access the services they need.”
Gina McIntyre, CEO of the Special EU Programmes Body, said: “This highly innovative EU INTERREG VA funded project will deliver real efficiencies in vital health and social care services for the benefit of thousands of people on a cross-border basis.
“This collaborative approach to deliver services will enhance access to the essential medical care used in the treatment of a wide-range of illnesses.”
Posted by: Fred - Tue-16-07-2019, 12:10 PM
- Replies (5)
This study doesn't mention psoriasis but as it mentions "Corticosteroids were taken in 18/21 patients on low‐dose Methotrexate (MTX)" I thought it may be of interest to some of our members that use it.
Quote:Objective:
Rheumatologic disease patients receiving immunomodulating drugs such as methotrexate (MTX) have increased infection rates. Strongyloides, a global endemic intestinal parasite, can cause significant or fatal disease in immunocompromised patients. The risk of serious Strongyloides infection with MTX dosed for rheumatologic disease is unknown.
Methods:
We performed a systematic literature review searching EMBASE, Medline and Web of Science databases. All studies reporting humans exposed to MTX and tested for Strongyloides were reviewed. Exclusion criteria were bone marrow transplantation, intrathecal route and MTX exposure completed >1 year prior to clinically apparent Strongyloides disease.
Results:
After excluding duplicates, 294 articles were reviewed. Of these, 29 cases were described in 27 papers. Twenty cases (69%) had an underlying rheumatologic or dermatologic disease, the rest a haematologic disease. Hyperinfection or dissemination was found in 59% of cases (52% low‐dose MTX; 75% high‐dose MTX). Death occurred in 34% of cases (19% low‐dose MTX; 75% high‐dose MTX, p<0.01). All eight patients on high‐dose MTX received other immunosuppressants. Corticosteroids were taken in 18/21 patients on low‐dose MTX. One of the three patients on MTX monotherapy had hyperinfection syndrome. None had disseminated Strongyloides.
Conclusions:
Serious Strongyloides infection can occur with low‐dose MTX particularly when given with other immunosuppression. Global travel and greater awareness of rheumatologic conditions in low‐middle‐income countries will increase exposure of individuals prescribed MTX (with or without corticosteroids) to Strongyloides. Strongyloides screening and treatment should be considered for individuals receiving low dose MTX therapy, particularly if combined with additional immunosuppression.
Posted by: Fred - Wed-10-07-2019, 12:38 PM
- Replies (3)
This study looked at the long term risk of malignancy in Korean adult patients with psoriasis.
Quote:Background:
The association between psoriasis and risk of malignancy has not been thoroughly evaluated in a large longitudinal cohort of Asian population.
Objective:
To determine the long‐term risk of malignancy in Korean adult patients with psoriasis.
Methods:
We conducted a nationwide population‐based prospective cohort study with a 15‐year observational period. During the baseline period (1997‐2000), total 1,773,786 Korean subjects who received health insurance from the National Health Insurance System were enrolled and 5,788 subjects were defined as a psoriasis group. The number of new‐onset malignancy was collected during the observational period (2001‐2015).
Results:
Patients with psoriasis had a higher adjusted hazard ratio (aHR) for development of overall malignancy (aHR 1.08, 95% confidence interval [CI] 1.00‐1.18) and gastric cancer (aHR 1.31, 95% CI 1.08‐1.58) compared to controls. The risks of non‐Hodgkin lymphoma and non‐melanoma skin cancer were significantly increased only in patients with psoriasis who received systemic treatments (aHR 2.86, 95% CI 1.07‐7.61 and aHR 3.93, 95% CI 1.47‐10.47, respectively).
Conclusion:
Psoriasis is associated with long‐term risk for overall malignancy in Koreans, which was primarily driven by the increased risk of gastric cancer.
Posted by: Fred - Wed-10-07-2019, 12:34 PM
- No Replies
This study aimed to assess whether genetic variants in the protein‐coding region or untranslated regions of the IL17A gene are associated with response to IL17A inhibitors in patients with psoriasis.
Quote:Background:
Genetic predictors for treatment response could optimize allocation of biological treatment in patients with psoriasis. There is minimal knowledge about pharmacogenetics of anti‐IL17 agents.
Objectives:
To assess whether genetic variants in the protein‐coding region or untranslated regions of the IL17A gene are associated with response to IL17A inhibitors in patients with psoriasis.
Methods:
This was a multicenter European cohort study investigating pharmacogenetics of IL17A inhibitors in patients with psoriasis. Patients with plaque psoriasis treated with secukinumab or ixekizumab in daily practice were included. For all participants, the protein‐coding region and untranslated regions of the IL17A gene were analyzed using Sanger sequencing. Identified genetic variants were tested for association with response to secukinumab/ixekizumab, measured as ∆PASI, after 12 weeks (primary outcome) and after 24 weeks (secondary outcome). Association was tested using a linear regression model with correction for baseline PASI as a fixed covariate, and for biological naivety and body mass index as additional covariates.
Results:
In total, 134 patients treated with secukinumab or ixekizumab were included. Genotyping of the cohort identified genetic variants present in untranslated regions and intronic DNA, but not in the protein‐coding region of the IL17A gene. Five genetic variants in non‐coding DNA with a known or suspected functional effect on IL17A expression were selected for association analyses: rs2275913, rs8193037, rs3819025, rs7747909, rs3748067. After 12 weeks, 62% of patients achieved PASI75 and 39% achieved PASI90. At week 24, PASI75 and PASI90 response rates were 72% and 62%, respectively. No associations were found between the five genetic variants and ∆PASI, PASI75 or PASI90 after 12 and 24 weeks of anti‐IL17A treatment.
Conclusions:
Response to IL17A inhibitors secukinumab and ixekizumab cannot be explained by genetic variation in the protein‐coding and untranslated regions of the IL17A gene. Pharmacogenetics of IL17A inhibitors in the treatment of psoriasis requires further exploration.
Posted by: Fred - Tue-09-07-2019, 12:01 PM
- Replies (2)
If you like what you see at Psoriasis Club please give us a shout out on your favourite social media.
We are the only totally independent psoriasis website and not money driven. As a result it is difficult for us to get found by those that need us. All our members are volunteers and all new members are given a warm welcome.
So if you are a member or just a guest reading through our public boards and you think we are doing a good job please give us a little mention.
You can also choose any of the public information. (*Members only boards can not be seen by social media so no point in mentioning those.)
If you think on the other hand we are doing a bad job then please do let us know via the Contact page so we can put it to our members and give you an answer.
And remember Psoriasis Club is very proactive against spam, so don't go posting somewhere you shouldn't. If you do receive spam mentioning Psoriasis Club please let us know and we will look into it.
#1 We needed to make a responsive page as Google were dropping us from their search results. Unfortunately there isn't a good way of making the forum phone friendly, and although we've never had the need for a homepage before it's the only thing we can do to try and please Google.
No doubt they will move the goalposts again like they usually do as we will never pay to rank higher in searches, but we keep fighting back.
#2 The new homepage gives the basics about psoriasis and what we do, our hope is that it will encourage our readers to come and have a look at our forum. Once they are reading through the 150,000+ posts they will see that we are just people with psoriasis and it may encourage them to come and join us.
I hope you like the new homepage, it's probably not of mush use to most of you as the point of Psoriasis Club is a forum. But we're not known for giving up when a new challenge pops up. Thank you to those members that helped shape and test the new homepage I appreciate it.
The next step is for me to keep telling Google we are conforming (allbeit not possible with the forum) and they are not only punishing us, but also genuine people with psoriasis looking for honest reliable news, information and support.
On the part of our members you can also help by promoting https://psoriasisclub.com on your social media outlets. *Please do not go spamming though
I have put it on Twitter and Pinterest and noticed already some of you have reposted it (thank you) but I don't use social media much so it's over to you.
To our lurkers of the forum if you feel we have helped you please feel free to give us mention somewhere, or better still come on in and join us.
*The forum is still at it's address https://psoriasisclub.org where it has been since we started so you won't have to change your bookmarks or log-in details.
Posted by: Kate - Mon-01-07-2019, 21:23 PM
- Replies (37)
Yippee! Finally, after 15 months on Cosentyx, my Derm has suggested that I reduce monthly dosage to 150 mg. my psoriasis is 95% gone! I've had it on both palms and sometimes on soles for about 2 years. Has anyone else been advised to reduce dosage and is outcome positive?
Hello everyone. I’ve been suffering since getting married in 2005. Started on my scalp and now have it all over (inc the crack of my bottom which can be so painful it brings tears to my eyes). I am that person who reads the ‘claims’ if miracle cures and buy it, only to be left disappointed (you’d have thought I’d have learnt by now!). I can sort of deal with the patches on my legs, torso and arms but I have it bad on my bottom cheeks which get so itchy and when they bleed it’s like a waterfall! I struggle with my scalp psoriasis and absolutely hate it. I have eventually found a shampoo which doesn’t irritate (the ones Drs prescribe seem useless) and I rinse with cider vinegar before using a little conditioner. I dream of waking up one day and finding it all gone forever! Only thing which has got rid of it, short term, was light therapy.
Today I had an appointment with the dermatologist and she examined my skin and was happy with the lack of plaques
I told of my scalp and the bit of flaking there
Now bearing in mind I have been on Fumaderm for 7 years and it has been very good to me in as much as I almost forget I have psoriasis and don't consider it anymore when making plans. I can wear dark or light clothes without any embarrassment .To be honest I am beginning to forget how bad it was for 50 years of my life
I'll get to the point, while there they wanted me to switch from Fumaderm to Skilarence, I was pleased as hopefully my GPs surgery can prescribe it for me
Basicly it is the same drug as fumaderm that I was on but doesn't have the added salts that fumaderm does so should be a straightforward switch
I will update as soon as I get my prescription filled ...I'm getting nervous at the moment as I'm very low on fumaderm tablets and hope tomorrow I can pick up the skilarence and begin
I'm hoping my thread will be boring and tell there's no change
Time will tell
Posted by: Fred - Thu-27-06-2019, 19:13 PM
- Replies (12)
How do you pay for your psoriasis prescriptions ?
We have members from around the world and thought it would be interesting to see how others pay for their psoriasis prescriptions. Even if you live in the same country as another do you all pay the same.
Here in France everyone has a card which pays around 60% of your prescription, if you register with a family doctor you get 70% (I think those figures are accurate, but it can be difficult to understand). With regard to the balance you have three options.
#1 You can pay the balance yourself.
#2 You can have insurance to pay the balance.
#3 You get 100% if you are on a low income.
But there is also a 4th option and that is to register for a Affection de Longue Durée (ALD) an illness that is on the list of "Long term or major illness" The good news with this is that psoriatic arthritis is on the list and in some cases it will be granted for psoriasis too. All you have to do is get your family doctor to sign a form every 5 years stating that you still have an ALD and get it approved by the health system.
I doubt newly diagnosed would get the full 100% straight away, but it is worth asking especially once you are referred to a dermatologist.
Posted by: Kat - Wed-26-06-2019, 01:50 AM
- Replies (86)
Okay so I got the call today from the pharmacy. For anyone interested the way the co pay works in the US is that if you are approved you will pay as little as $5 each shipment and if you aren't approved you won't pay over $25. So it's very different from the way Stelara worked and Cosentyx. So far all of the three biologics for me have been handled differently in billing. It's a bit crazy!
They are going to ship and I've agreed to pay $25 for the first shipment so as not to wait. I'll have to call the Taltz people to see if I get approved for the $5 co pay. If I do then future shipments will only be $5, if not they will remain at $25. No, I have no clue as to why it's that way. But at least it's affordable. (Stelara and Cosentyx were no cost to me) These rates have been approved for the next 36 months, not sure what happens after that but we'll see how it works and worry about that later.
I will hold off taking any pictures until the day of my first injection. The schedule will be 2 injections the first time (starter dose, each injection is 80mg) then 1 injection every two weeks for 3 months and the 1 injection every 4 weeks for maintenance.
Just joined your forum. I was diagnosed with P in 2004, aged 43, and in Feb this year was burdened with psoriatic arthritis. I've been on the carnivore diet for 20 days as a way to treat both, but I'm coming off the meat wagon. It's made me too skinny, and I was already thin to start.
I'll still keep my diet fairly restrictive: no grains, no sugar, and I react badly to dairy n eggs. And I'll see how it goes.
I've also, last night, started taking low-dose naltrexone. Apparently it takes a while to kick in, so I'll update any results if and when.
Posted by: Kevinito - Sun-23-06-2019, 01:24 AM
- Replies (1)
...to Skyrizi.
The last stint of Cosentyx did not work - on for six months with little relief. The doc recommended Skyrizi - anyone familiar with this one? Any expectations/concerns?
My name is Georgiana. I have psoriasis for 20 years. I started treatment with Taltz 2 weeks ago. The results are incredible.After I made the first dose, the injection site was red, after which the skin returned to normal, but this morning I woke up with the places where the injections were injected again inflamed. Do I have to worry about it?
Posted by: Fred - Tue-18-06-2019, 10:46 AM
- Replies (12)
Janssen Pharmaceutical have released phase 3 results of Tremfya (guselkumab) for psoriatic arthritis.
Quote:
Janssen Pharmaceutical announced top-line results from the Phase 3 DISCOVER 1 and 2 studies, which evaluated the efficacy and safety of guselkumab compared to placebo in adult patients with active moderate to severe psoriatic arthritis (PsA). Both studies met their primary endpoints of American College of Rheumatology 20 percent improvement (ACR20), and the safety profiles observed for guselkumab in the DISCOVER program were consistent with previous studies of guselkumab and TREMFYA® current prescribing information.
The DISCOVER program comprises the first-ever Phase 3 studies evaluating an IL-23 p19 inhibitor for the treatment of psoriatic arthritis, and data will be presented at upcoming scientific medical meetings. Data from the two DISCOVER studies will serve as the basis of submissions to the U.S. Food and Drug Administration and European Medicines Agency seeking approval of guselkumab as a treatment for psoriatic arthritis, which are anticipated for later this year.
The DISCOVER program consists of DISCOVER-1 and DISCOVER-2, two randomized, double-blind, multicenter Phase 3 studies designed to evaluate efficacy and safety of subcutaneous guselkumab in patients with active PsA compared to placebo. In addition to the primary endpoint of ACR20 response at week 24, multiple secondary endpoints were assessed that included ACR50/70, resolution of soft tissue inflammation (enthesitis and dactylitis), disease activity (DAS-28 CRP), improvement in physical function (HAQ-DI), skin clearance (IGA), and quality of life (SF-36 PCS and MCS). DISCOVER-2 also assessed effect on structural damage (vdH-S) as a key secondary endpoint.
DISCOVER-1 included 381 participants, including participants previously treated with anti-TNF biologics. The study continued through 52 weeks. DISCOVER-2 included 739 bio-naive participants and continued through 100 weeks.
Posted by: Fred - Thu-13-06-2019, 18:57 PM
- Replies (2)
This trial investigated the effect of Cosentyx on the signs and symptoms of psoriatic arthritis (PsA) and the inhibition of radiographic progression of PsA.
Quote:
Novartis announced today new data from the FUTURE 5 trial showing no radiographic progression (mTSS <0.5) in almost 90% of psoriatic arthritis (PsA) patients treated with Cosentyx® (secukinumab) 300mg over 2 years.
"Half of patients with psoriatic arthritis experience bone erosion within approximately two years. Left untreated, this can lead to irreversible joint damage and disability, having a substantial impact on quality of life," said Dr. Philip J. Mease, Director of Rheumatology Research, Swedish Medical Center/Providence St Joseph Health and Clinical Professor, University of Washington School of Medicine, Seattle, WA. "The availability of a treatment that is proven to inhibit progression of psoriatic arthritis through two years gives physicians and patients more choice in the management of this debilitating condition."
The trial investigated the effect of Cosentyx on the signs and symptoms of PsA, in addition to inhibition of radiographic progression of PsA. These data demonstrate that 89.5% (300mg), 82.3% (150mg) and 81.1% (150mg no loading dose [LD]) of PsA patients treated with Cosentyx found no radiographic progression at 2 years. Clinical responses, such as American College of Rheumatology criteria (ACR20/50) and Psoriasis Area and Severity Index (PASI 90/100) were also maintained through 2 years, with 77% of Cosentyx 300mg patients achieving ACR20, 51.9% ACR50, 70.1% PASI 90 and 49.5% PASI 100. Results were also achieved at the lowest dose of Cosentyx 150mg (79.4% ACR20, 52.6% ACR50, 59.2% PASI 90 and 44.2% PASI 100)[1]. These data are being presented at the Annual European Congress of Rheumatology (EULAR) on 12-15 June in Madrid, Spain.
"We are continuing to reimagine psoriatic arthritis therapy to improve patients' lives and provide a treatment option that addresses multiple manifestations and inhibits disease progression," said Eric Hughes, Global Development Unit Head, Immunology, Hepatology and Dermatology. "These data further reinforce Cosentyx as a comprehensive treatment that's backed by over 100 studies, including five-year data across psoriasis, psoriatic arthritis and ankylosing spondylitis."
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Psoriasis Cure!
How many people have Psoriasis?
In 2012 there were approximately 36.5 million prevalent cases of psoriasis, and by 2022, GlobalData epidemiologists forecast that this figure will reach approximately 40.93 million.
The condition affects individuals of both sexes and all ethnicities and ages, although there is a higher prevalence of psoriasis in the colder, northern regions of the world.
The prevalence of psoriasis in the central region of Italy is 2.8 times greater than the prevalence in southern Italy.
Caucasians have a higher prevalence of psoriasis compared with African-Americans, but African-Americans in the US tend to suffer from a more severe form of the disease.