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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
After suffering from psoriasis for >30 years I have yet another consultant appointment this week. I have been using Enstilar effectively over the last year or so which does help but I have so many patches its becoming unmanageable (plus it makes me feel like I could swim the channel I'm so greasy).
I've had light treatment several times which has been effective but the psoriasis returns quite quickly afterwards.
My guess is that I will get offered Methotrexate from the consultant but I really want to avoid having to take it, with all the known side effects and lifestyle modifications. There are some much newer, more effective treatments that I would like to try. I wondered if anyone else has had a similar situation or suggestions on how to drive the discussions.
I was on Otezla for 2 years and then got on Tremfya 3 months ago. Tremfya was basically as effective as an injection of saline so I'm back on Otezla which does a decent job but not fantastic. Any advice or recommendations?
I learned the hard way this week. No matter that I keep the shower stall clean, using a squeegee on the walls and floors, drying with a cloth after showering. Each time I shower, the moisturizer creams or the coconut oil makes the shower stall floor slick.
I'd forgotten my razor on the bathroom counter and turned off the shower's flow, quickly stepped out of shower to fetch the razor, quickly hopped back into the shower stall to shave my legs. A sudden loss of balance and nothing to be done for it.
I fell against the stall's built-in bench, striking my side between my ribs and hip on Tuesday. I was temporarily immobilized by pain and could only call out in agony. My partner rushed in, assessed the crisis, covered me with a towel, and sat on the floor nearby until I could move.
The rest of Tuesday was pained with little mobility. I slept sitting up. On Wednesday, a trip to "same day" care for doctor and x-rays took three hours. But nothing was broken. Kidney is okay. Heart is okay. I got prescriptions for Tramadol and Lidocaine Patches.
I'm resting and hoping to be able to work on Saturday.
So this is my warning to not try gymnastics in the shower or bath if you are also using moisturizers and/or coconut oil. (And it's my appeal for sympathy since it still hurts, even though it's 70% better than Tuesday.)
I have to say it’s the best one I’ve seen or been in, it’s easy to navigate and welcoming.
I like the non psoriasis boards a lot too, because although at times psoriasis can be a bit all consuming when you are itchy, sore or whatever, there’s much more to life and it really gives shape to those who take part. If it were just about the P I would probably only pop in occasionally.
I wouldn’t feel comfortable giving the information I give here on other forums but I am very happy with Fred’s approach and I know he and others are keeping watch on it all.
In fact the question is: “Why has Psoriasisclub the nature that we see?”
I think there are a lot of factors that play a role in the nature of Psoriasisclub.
I visit other forums some times, of many kinds and types, e.g. photography, motorcycles, sometimes a technical forum though they are hard to understand, etcetera.
They are mostly helpful also, but have a different atmosphere.
Sometimes I visit facebook psoriasis sites, facebook is kind of a fehtherlight streaming forum with a very low span of attention. And over there I read a lot of nonsense and weird idea on psoriasis. There is a forum of the dutch association, where I sometimes post. They are reasonably good, but there is not so much activity.
So that winds back to partly what Forest said about psoriasisclub concerning adverts and integrity. But there is more to psoriasisclub.
There is knowledge and experience over here. The members together have gathered immense experience, without forcing that experience to others. They tell other members with questions about their personal experiences with medication or show the way to members that do have experience.
It is a factor that is greatly missed by industry. Yes there is scientific research and statistical proof, but to gain real insight you must dive in to personal experiences.
The strong point is that psoriasisclub has grown into a group of knowledged and friendly friends, spread out over the world, who have never met each other, mostly have never seen each other, but still are friends.
The club has, thanks to Fred, a number of simple rules where above all the rule is to respect each other, and for some reason that really works very well with psoriasisclub.
The club also thanks to Fred, has always the newest news facts about psoriasis and Psoriatic Arthritis. I have never seen that anywhere else. I even know that e.g. in the Netherlands the medical inspections (IGJ) has the weird philosophy that this kind of news should not given to patient as not to give them too much hope. Now that is a weird philosophy.
The club also has a lot of humour and interesse in each other’s life outside the psoriasis life. Half of what is posted is not about psoriasis but about a lot of other things in life, where we all have our opinions about, sometimes very different and the way that we discuss that has already learnt me lot of things and sometimes changed my view to things that I was sure of.
And last but not least the club has a great Staff… Kind of weird combination… a cow girl from the States, a fossil seeking gentleman from England, an English speaking hermit living unfindable in the country of France and a Dutch motorcycle girl dancing through life.
But…. It all works. and I bet this is not all that can be said about psoriasisclub.
I'm just going to whine. The nausea and headaches with oral MTX are bugging me. I'm seeing my dermatologist on Tuesday and will ask about switching to the injectable, as Dave recommended. But I also miss sharing a glass of wine with my partner. And I would like to enjoy a bourbon, now and then.
The MTX has been working, though. But the nausea and headaches are not so fun. Possibly, the headaches would persist with the injectable form, even if the nausea abates.
I'm going to read up on Interleukins and try to understand them. My gastroenterologist said that Stelara works for both Crohn's and Psoriasis. Humira targets TNF-alpha, not the interleukins.
I'm grateful for the information on these various medications in Psoriasis Club.
Posted by: Fred - Tue-01-02-2022, 13:05 PM
- Replies (17)
This months poll above asks: What effect has Food had on your psoriasis and/or psoriatic arthritis ?
Voting is open to members and guests, you can choose more than one option and our members can also leave a comment if they wish.
Over the years I have tried a few things with my diet, but have never noticed any difference in psoriasis or psoriatic arthritis good or bad from what I'm eating.
Quote:
UCB today announced positive top-line results from the Phase 3 BE COMPLETE study, which evaluated the efficacy and safety of BIMZELX® (bimekizumab) in the treatment of adults with active psoriatic arthritis, who were inadequate responders or intolerant to anti-tumor necrosis factor-alpha (anti-TNF-α) therapy.
BE COMPLETE met its primary endpoint, demonstrating that significantly more patients treated with bimekizumab achieved 50 percent or greater improvement in signs and symptoms of disease from baseline, compared with placebo, as measured by the American College of Rheumatology (ACR) 50 response at week 16.
The study also met all ranked secondary endpoints. Bimekizumab showed significant improvements over placebo at week 16 in physical function, as measured by Health Assessment Questionnaire-Disability Index (HAQ-DI); skin clearance, as measured by at least a 90 percent improvement in the Psoriasis Area and Severity Index (PASI90); physical health status, as measured by the Short Form 36-item Health Survey (SF-36) Physical Component Summary (PCS) score; and low disease activity, as measured by the Minimal Disease Activity (MDA) index.
“The BE COMPLETE results mark the latest positive data in a series of four Phase 3 readouts for bimekizumab in the treatment of psoriatic arthritis and axial spondyloarthritis. We believe that these consistent and robust results have the potential to elevate the standard of care for patients, “Both psoriatic arthritis studies in the program used ACR50 as the primary outcome measure. The positive findings in both studies highlight the clinical potential of bimekizumab in psoriatic arthritis for both biologic naïve and anti-TNF therapy experienced patients.”
In BE COMPLETE, the safety profile of bimekizumab was consistent with safety data seen in previous studies with no new observed safety signals. The safety and efficacy of bimekizumab in psoriatic arthritis have not been established, and it is not approved for use in psoriatic arthritis by any regulatory authority worldwide.
The top-line results from the BE COMPLETE study build on the positive top-line interim analysis results from the Phase 3 BE OPTIMAL study in adults with active psoriatic arthritis, who were biologic disease-modifying anti-rheumatic drug (bDMARD) naïve, reported in November 2021. Based on these results, UCB plans to submit regulatory applications for bimekizumab in psoriatic arthritis in the United States and the European Union in Q3 2022.
I have a bad flare up after stopping Simponi (too much skin cancer to manage). I am sooooooo fatigued and wonder if that is caused by the flare up or the general state of the world.
Posted by: Jfbailey - Thu-20-01-2022, 01:44 AM
- Replies (14)
Glad to find this forum. I recently moved to Oregon and the care protocol is very different than where I lived in California. Here I am seen by a physician’s assistant only. Besides seeing patients for diseases of the skin, the office sees a lot of clients for Botox, cellulite treatment and who knows what else (I delete the ads they send me.)
After being on Simponi for probably 8 years, I started getting a lot of skin cancer ( new ones popping up weekly) and had to have surgery on spots on my legs 4 times in 3 months. My new rheumatologist said that increased skin cancer was a side effect of Simponi. I stopped the Simponi in December and have fewer incidence of skin cancer already (only planning two surgeries next month!)
However, my psoriasis has flared with a vengeance. I have it all over, including places that I haven’t ever had it (in 45 years with PA). Interestingly my psoriatic arthritis hasn’t flares without Simponi.
My dermatologist Physician’s assistant suggested Skyrizi and asked me to consult with my rheumatologist. (In California, the doctors would have talked directly to come up with a plan…)
My rheumatologist said that Skyrizi wasn’t authorized for PA and suggested Otezla, telling me to discuss with my dermatologist. I decided to try Skyrizi but the dermatologist says now it wouldn’t be appropriate since I have PA. (Huh? I wouldn’t have known of the drug if he hadn’t mentioned it). He said we will talk in a month.
I am frustrated, itching and moisturizing constantly. Daily new spots appear.
I’d like to see a doctor who specializes in psoriasis and skin cancers. Does anyone know of a dermatologist near Ashland or Medford Oregon? I looked at the USA psoriasis site and one doctor is listed. Haven’t heard of her or her practice group, but I’ll call tomorrow to see what her focus is.
Sorry for the long —and whiny— intro. But, I know you guys get it. Thanks.
Posted by: Fred - Fri-14-01-2022, 15:24 PM
- No Replies
Another new treatment in the pipeline for treating psoriasis.
Quote:
Can-Fite BioPharma a biotechnology company advancing a pipeline of proprietary small molecule drugs that address inflammatory, cancer and liver diseases, today announced that pre-clinical studies with skin cells, modeling psoriasis in humans, show that Piclidenoson, the Company’s drug candidate for the treatment of psoriasis, destroys pathological skin cells. The Company’s scientists reported that in a cell culture of human HaCaT cells, incubated with Piclidenoson, cell apoptosis was induced with an increase in the caspase protein, known to mediate apoptotic responses.
Piclidenoson is a novel, first-in-class, A3 adenosine receptor agonist (A3AR) small molecule, orally bioavailable drug with a favorable therapeutic index demonstrated in Phase II clinical studies.
The Company expects to announce topline results during Q1 2022 from its randomized, double blind, active and placebo-controlled study currently being conducted in Europe, Israel, and Canada. The study’s primary endpoint is the proportion of patients who achieve a PASI score response of ≥75% (PASI 75) vs. placebo at week 16. Secondary endpoints include non-inferiority to Otezla® in weeks 16 and 32. Patients enrolled in the study have been selected based on their over-expression of A3AR, Can-Fite’s therapeutic target.
“The data shown in our lab experiments are important and support the mechanism of action of Piclidenoson and supply additional support for the drug effect. We are encouraged by the positive interim analysis data reported last year based on 200 patients’ data and hope that it will be reproducible and that psoriasis patients will benefit from safety and long term relief from the symptoms of psoriasis,” stated Can-Fite CEO.
The psoriasis therapeutic market is estimated to reach $11.3 billion by 2025. Piclidenoson has been out-licensed for the indication of psoriasis in major markets including Canada, Europe, and Asia with deal terms including potential upcoming milestone payments and double-digit royalties upon regulatory approval.
Posted by: Fred - Fri-14-01-2022, 12:53 PM
- Replies (5)
This study looked at the prevalence and factors associated with sleep disturbance in adult patients with psoriasis.
Quote:Background:
Sleep, which is crucial for restoring of physiological functions and health, is reportedly impaired in psoriasis. The role of different potential sleep confounding factors, including detailed pruritus characteristics, and the complex interplay between psychological variables (anxiety and depression), pruritus and sleep disturbance in psoriasis remain insufficiently investigated.
Objectives:
To investigate sleep characteristics and to identify clinical, demographic, and psychological factors associated with sleep disturbance in psoriasis.
Methods:
This cross-sectional study included 334 psoriasis patients (response rate 86%) and 126 control subjects (response rate 82%). Measures included sleep quality [Pittsburgh Sleep Quality Index (PSQI)], psoriasis severity, pruritus characteristics, including average pruritus intensity [Visual Analogue Scale (VAS)], severity of comorbidities, anxiety and depression (Hospital Anxiety and Depression Scale – HADS), and quality of life (Dermatology Life Quality Index – DLQI, and Short Form 12 – SF12).
Results:
Fifty-nine percent of patients, and 34% of control subjects (P<0.001) suffered from sleep disturbance (PSQI>5). Patients slept 1 hour less than control subjects (median 6 vs. 7 hours, P<0.001). Patients without pruritus had less impaired sleep (global PSQI) than patients with strong (P<0.001) and very strong pruritus (P<0.001). Anxiety (HADS-A) and depression (HADS-D) levels were the strongest predictors of sleep impairment, followed by pruritus exacerbation at night, age, female sex, pruritus exacerbation in the morning, average pruritus intensity (VAS), diagnosed depression and gastroesophageal reflux disease, altogether explaining 32% - 37% of the variance in global sleep quality. Both, anxiety (HADS-A) and depression (HADS-D) were significant mediators explaining the association between pruritus intensity (VAS) and sleep impairment in 42% and 37%, respectively.
Conclusions:
Sleep disturbance in patients with psoriasis is highly prevalent. Patients with psoriasis should be assessed for sleep impairment, pruritus, anxiety, and depression. Reduction of pruritus should be considered as an important therapeutic goal, along with therapies aimed at reducing anxiety and depression.
Posted by: Fred - Wed-12-01-2022, 22:05 PM
- Replies (15)
I thought it would be interesting to get some history from our members about their psoriasis.
Copy and paste the questions and add your answers. *You can also add other comments and replies if you wish and leave questions blank if you don't want to share.
#1 What age did you think something was going wrong:
#2 How many years later was it that you got a diagnoses:
#3 When you got a diagnoses how did it make you feel:
#4 What was your first treatment:
#5 Did you think it was a temporary thing:
#6 How long before you got to see a dermatologist:
#7 What did you think of your first dermatologist:
#8 Have you ever given up on a prescribed treatment:
Posted by: Fred - Mon-03-01-2022, 19:45 PM
- Replies (4)
This is a voluntary recall notice of Taro Clobetasol Propionate Ointment USP.
Quote:
Taro Pharmaceuticals U.S.A is voluntarily recalling one (1) lot of Clobetasol Propionate Ointment USP, 0.05% packaged in 60 g tubes, to the consumer level.
This recall ONLY applies to tubes labeled with “Lot AC13786” and “Exp Dec 2022 ”. No other lots of this product are impacted. Lot AC13786 is being recalled due to the presence of Ralstonia pickettii bacteria (“R. pickettii”), which was discovered by the manufacturer through routine testing.
R. pickettii is present in the natural environment (soil, water) and for healthy individuals with intact skin, is unlikely to cause any localized or systemic infections. However, for individuals who are immunocompromised, or whose skin is not intact (i.e. sunburn, psoriasis, abrasions), there is a reasonable possibility that systemic infections may occur if the product is contaminated with R. pickettii due to the presence of the corticosteroid component which enhances absorption of the ointment.
If this bacterium is circulating in the human blood stream it can cause life-threatening, invasive infections such sepsis, pneumonia, meningitis, inflammation of the bone or bone marrow, and infection in the joint fluid and joint tissues. To date, Taro has not received any adverse event reports related to this lot.
*This recall is being conducted with the knowledge of the US Food and Drug Administration.
Posted by: Kat - Sat-01-01-2022, 17:38 PM
- Replies (12)
So I know that those red scaly patches itch. And I know moisturizing helps. I know scratching is to be avoided if at all possible. BUT... I admit that I scratch way more often than I should. So I was wondering, what do you do to ignore that itch??
I've found I can refrain from scratching if I'm out in public or around people, at least not that satisfying digging in scratching. Although there have been times I've excused myself to go find a secluded spot to scratch.
I've also found that with scalp psoriasis I can go outside in the sun and since I have long hair I can shake my head and watch the specks that fall shimmer in the sunlight as they blow away, a bit like a snow globe! I'm easily amused at times. But that only lasts a few seconds so isn't really helpful. Actually it might even be a little bit weird.
Around January 2021, a persistent but calm and subtle rash on my ankle bloomed into a troublesome, painful, patch. A primary care doctor referred me to a dermatologist who took two punch biopsies.
Before I found Psoriasis Club:
This first dermatologist told me incorrect information regarding Humira and Psoriasis. He prescribed Betamethasone 0.05% for the legs, a similar formula lotion for the scalp, and Desonide Ointment 0.05% for sensitive areas and skin folds.
His manner was arrogant and rushed. He provided little information. Patches continued to spread upon my lower legs and appear on my torso, arms, genitals, and more across my scalp.
I finally searched for support online when my fingertips and the insteps of my feet began bleeding. I had developed thinning skin from the topical steroids.
When I found Psoriasis Club:
I learned about overusing topical steroids. I learned about different medical therapies. I read that a couple members had managed their skin through diet alone. This club offered me information that the first dermatologist failed to provide. This club inspired me to find a better doctor.
While the dietary changes didn't affect my skin, I did reduce my sugar intake significantly and feel better for it, overall. I rely less on wheats, also. My overall diet has improved.
My current dermatologist:
I'm receiving good, compassionate, intelligent care, now. My current dermatologist has provided information on how to use topical steroids, changed the ointments, added a Vitamin D derivative, provided a schedule for usage. She's offered light therapy, Methotrexate, and Folic Acid. She provided printed information on this condition and assurance that there are other medications to try.
Best of all:
I understood the options discussed by this doctor because I read about prescribed treatments here. Psoriasis Club has helped me to be informed about my condition and the treatments.
On this last day of 2021, I feel contemplative, looking back over the year. I'm hopeful, looking forward to skin improvement and the continued sense of belonging in a community of patchy people from all around the world here at Psoriasis Club.
Posted by: Fred - Thu-30-12-2021, 17:44 PM
- Replies (6)
The Medicines and Healthcare products Regulatory Agency (MHRA) UK are advising anyone using Dermaved cream stop using it immediately.
Quote:
Individuals who have purchased Dermaved Sensitive Cream via the company’s website are today being asked to stop using it and return the product after it was found to contain a potent steroid.
The MHRA, who issued the recall, has worked to ensure that Dermaved Sensitive Cream is removed from sale.
Dermaved Sensitive Cream is not a licensed medicine and has been marketed in the UK as a natural Ayurvedic product for sensitive skin.
The MHRA’s analysis of the product found the presence of the steroid clobetasol propionate. This is the active ingredient in topical (on the skin) Prescription-Only medicines used for the treatment of a range skin conditions such as psoriasis and eczema.
Creams containing steroids should be used sparingly and as directed by the prescriber. They should also not be used on children under 1 year of age. Long-term use can rarely cause local complications such as skin thinning and if inappropriately used, can worsen conditions such as eczema.
MHRA has previously issued warnings for products called Zudaifu cream and Yiganerjing Cream which contained the same steroid ingredient.
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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.