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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
Hi all
I was diagnosed with Psoriasis when I was seventeen, not a good time to get covered in scales, I was enjoying my young life and was very keen on girls.
But when I shew signs of Psoriasis I would cover up and get very embarrased.
This was over 45 years ago and I dont think people were so liberal minded then.
I used to coat myself in the terrible gunk they prescribed at the hospital usally salysilic acid ( I've probably got the spelling wrong)or other coal tar treatments.
When these were ineffective they offered ultra violet tratment, in those days it was quite hit and miss. I stood in front of a large relector and someone adjusted a pair of carbon rods together to create an arc and produce UV. More than once I came out like a lobster.
Then I was put on steroid creams etc many different ones, some more effective than others. I found that by sunning myself in the summer as much as I could I would get relief from the symptons. then a month or so into the winter back it came and I would cover up again long sleeved shirts, no shorts. I found having Psoriasis made me very self conscious mainly when it was on my forehead and in my hair. Even if it was not visible I was always fearful of people seeing it. Fortunately I met my now wife and she is very understanding and did not make me feel like a leper. Although she was constantly hoovering.
I have had PUVA treatment but as I have read in here by others I to have had over a lifetimes allowance of UV and they will not give it to me any more.
I was then put on Methotrxate a super drug for controlling Psoriasis . I used to take 10 tabs on a Monday then on Tuesday I would always feel generally unwell, I then took on a Friday Folic acid tab. But I got to dread Mondays and had trouble swallowing all the tablets so I asked to come off it and then after a while they put me on Fumaderm. It works great for me. At first I had a few stomach cramps and hot flushes but I felt much better than on Methotrexate.
When I have plaques on my body (which I havent since starting Fumaderm) I used to help at the medical school showing the student doctors the various ways Psoriasis looks and give them an insight of how a person feels when suffering and explaining that there are phycological consequences to having the condition.
Then a couple of years on you find they are taking the Psoriasis clinic!!!. My feelings on that are in my other post Yesterday
Posted by: Dawnkjc - Wed-02-10-2013, 10:49 AM
- Replies (24)
Hello nice to find the site and read up how everyone copes. I was 17/18 when I got a small patch of psoriasis just after the birth of my boy. I am now 30 and also now have been diagnosed with psoriatic arthritis just 6 months ago. Nice to meet you all Dawn
Hi I have suffered with P for over 40 years and have been through most of the available treatments.
Just over a year ago I took myself off methotrexate as I hated the unwell feeling I had the day after taking them. Although they did a great job of keeping me clear for over 2 years. I was getting to dread Monday when I had to take them.
I was started on Fumaderm initial which was then upped to Fumaderm which although slow to clear I would say within 2 months I was clear taking 6 tabs a day
On my last visit I was cut down to 4 a day and so far so good.
My problem is I have been diagnosed with prostate cancer ( not bad) and am having Hormone tablets as part of the treatment Cyproterone 100mg and a three monthly injection of Prostap.
Has anyone had any experience of this combination as I asked the question of my GP who thought I should stop the fumaderm. I told my dermatology department this and they said it would be a good idea to stop taking them, for no other reason than I had brought the subject up.
They have not given any reason or offered alternative therapy.
Sorry about the rant but had to do it, Anyone out there with any advice.
If I get any from my hospital I will post the answer as it may help others
Posted by: Fred - Tue-01-10-2013, 10:38 AM
- No Replies
This article published in The British Journal of Dermatology is the longest drug-survival analysis of Enbrel (etanercept) for psoriasis and goes up to 7.5 years.
Quote:Background:
Long-term data of etanercept drug-survival in psoriasis patients in daily-practice are scarce.
Objectives:
Primary objective was to describe drug-survival for etanercept in a long term daily practice cohort of patients with psoriasis. Secondary objective was to identify determinants of drug-survival for etanercept in general and separately for discontinuation due to adverse events or inefficacy of therapy.
Methods:
Data were extracted from a prospective daily-practice cohort of patients treated with biologics for psoriasis. Drug-survival was analyzed by Kaplan-Meier survival-curves and split for two reasons for discontinuation: adverse events and inefficacy. Determinants of drug-survival were analyzed in univariate Cox-regression analysis and in multivariate Cox-regression analysis with backward-selection.
Results:
We included 193 patients (512 treated patient years) with a maximum treatment duration of 7.5 years. The overall drug-survival was 77%, 41% and 30% after 1, 4 and 7.5 years, respectively. The mean survival duration was 3.8 years [95% confidence interval (CI95%) 3.4-4.3]. Reasons for discontinuation were inefficacy (33.7%), adverse events (11.9%), both inefficacy and adverse events (4.7%) or other reasons (e.g. pregnancy wish) (5.7%)). Determinants of longer general drug-survival were male sex (Hazard ratio (HR=0.55), prior anti-TNF-alpha use (HR=0.57), and lower etanercept dose (HR 0.65). Younger age (HR 0.83), lower BMI (HR=0.63) and lower etanercept dose (HR=0.71) decreased the risk of discontinuation due to side-effects. A lower mean weekly dose of etanercept (HR=0.63) decreased the risk of discontinuation due to inefficacy of therapy.
Conclusions:
We present the longest drug-survival analysis of etanercept for psoriasis until now. The overall drug survival was 77%, 41% and 30% after 1, 4 and 7.5 years, respectively and a median drug-survival duration of 3 years. Determinants of longer overall etanercept drug-survival were male sex, prior anti-TNF therapy and lower etanercept dose. The determinants of longer drug-survival depended on the reason for discontinuation of etanercept.
Posted by: Fred - Sun-29-09-2013, 14:42 PM
- No Replies
When you make a new post etc you get a message telling you your action was successful and you will be taken back to where you came from or something like that. If you don't want to see that message any-more as you are fed up with it and you just want to go straight to your post etc, follow these instructions.
Go to your User CP and on the left hand side click "Edit Options" Scroll down and on the right you will see "Show friendly redirect pages." Uncheck that box and click "Update Options".
No more message.
*Please note this will also affect a sent PM, so you will not get notification that your message was sent successfully.
Personally I like the message as I know my action was successful, but for the speedy ones amongst us it may be helpful.
My name is Kate and I have just stumbled across this club and I am delighted that it exists.
Its coming into summer in Australia which usually leaves me feeling anxious and irritable as the options for what I can wear quickly reduces. I try hard to not let it bother me but I'm a work in progress.
I have had psoriasis for 20 years so have tried every possible treatment with different variations of success but I'm hoping that I can share my knowledge and coping strategies with other people who live with this condition.
So I know all the rules for not irritating your skin: don't scrub, use hydrocortisone, take Vitamin E, shower as little as possible. But I still get terrible, bright red, irritated patches all over my nose and on the sides of my face, as well as when I shave my mustache. Is there any help for me?
Posted by: Fred - Tue-24-09-2013, 12:43 PM
- No Replies
Following a couple of members having a problem with their vision and the colour scheme of the Psoriasis Club theme, logged-in members will have the option to change to the basic software blue theme. I have left the header logo as it was, so you will have to put up with a little bit of green.
Here is a sneaky peek, click the image to enlarge.
To switch you need to be logged-in, go to your User CP and follow these instructions.
On the left hand side click "Edit Options"
Scroll down to the bottom right where you see "Other Options"
Click the "Board Style" window
Click "Blue"
Click "Update Options"
You will now be using the basic software blue theme.
You can change back at any time to the Psoriasis Club Theme by following the above and clicking "Pclub" or "Use Default"
It should work the same as the Psoriasis Club theme but if you have any problems, or you cant figure out how to use it, please let me know.
I hope it has helped members with vision problems.
Fred.
EDIT: Since the latest forum upgrade as no one was using the blue theme it is no longer available.
Posted by: Fred - Mon-23-09-2013, 12:20 PM
- Replies (14)
At last the European Commission have approved Stelara for use with Psoriatic Arthritis. I have been following this for a while now as I have always said it works (maybe not as good as others), but it does work for Psoriatic Arthritis (PsA).
Quote:
Janssen-Cilag International NV ("Janssen") announced today that the European Commission has approved the use of STELARA (ustekinumab), alone or in combination with methotrexate, for the treatment of active psoriatic arthritis in adult patients when the response to previous non-biological disease-modifying anti-rheumatic drug (DMARD) therapy has been inadequate.
The decision from the European Commission follows a positive opinion recommending the use of STELARA from the Committee for Medicinal Products for Human Use (CHMP) of the European Medicines Agency (EMA) in July 2013. STELARA is the first in a new class of biologics now available for patients living with active psoriatic arthritis, a chronic autoimmune disease characterised by joint swelling and tenderness, periarticular tissue inflammation (enthesitis, inflammation of the site where ligaments or tendons insert into the bones, and dactylitis, inflammation of an entire digit, e.g., finger or toe, often called "sausage digit"), as well as psoriasis. The disease affects approximately 4.2 million people across Europe, and there is currently no cure.
"The European Commission approval of STELARA for the treatment of active psoriatic arthritis brings an important new therapeutic option to patients and marks the first treatment approved for this devastating and complex disease since the introduction of anti-tumor necrosis factor (TNF)-alpha agents," said Jerome A. Boscia, M.D., Vice President, Head of Immunology Development, Janssen Research & Development, LLC. "Data from the Phase 3 clinical program, one of the largest conducted for a biologic to date in psoriatic arthritis, showed STELARA effective in improving symptoms and signs of active psoriatic arthritis in anti-TNF-alpha naïve and experienced patients. We believe STELARA will play a critically important role in the treatment of this chronic disease moving forward."
The European Commission provided approval based on a review of data from two pivotal Phase 3 multicenter, randomised, double-blind, placebo-controlled trials of ustekinumab, a fully human anti-interleukin (IL)-12/23p40 monoclonal antibody, administered subcutaneously, in patients with active psoriatic arthritis (PSUMMIT I and PSUMMIT II). The trials evaluated the efficacy and safety of subcutaneously administered STELARA 45 mg or 90 mg at weeks 0, 4 and then every 12 weeks. The trials included patients diagnosed with active psoriatic arthritis who had at least five tender and five swollen joints and C-reactive protein (CRP) levels of at least 0.3 mg/dL despite previous treatment with conventional therapies. PSUMMIT II also included patients who had previously experienced treatment with TNF inhibitors. The primary endpoints for both studies were the proportion of patients demonstrating at least a 20 percent improvement in arthritis signs and symptoms (American College of Rheumatology [ACR] 20) at week 24. Secondary endpoints at week 24 were: improvements in Health Assessment Questionnaire Disability Index (HAQ-DI) scores, a 50 or 70 percent improvement in arthritis signs and symptoms (ACR 50 or ACR 70) and at least a 75 percent improvement in psoriatic skin lesions as measured by the Psoriasis Area Severity Index (PASI 75) in patients with at least three percent body surface area involvement with psoriasis at baseline. The studies also captured improvements in enthesitis and dactylitis scores for patients with enthesitis and/or dactylitis at baseline.
The safety results of STELARA observed in the PSUMMIT studies were consistent with the known safety profile of STELARA in the labelled moderate to severe plaque psoriasis indication with up to 5 years of safety experience in clinical trials.
Posted by: Fred - Mon-23-09-2013, 12:02 PM
- No Replies
Alefacept (sold as Amevive) though never approved for Europe it was used in Canada, USA, Israel, Switzerland, & Australia before being withdrawn. Astellas Pharma US said the decision to cease Amevive sales was neither the result of any specific safety concern nor the result of any FDA-mandated or voluntary product recall. Source: amevive.com/Patient%20letter.pdf
Quote:Background:
Type 1 diabetes results from autoimmune targeting of the pancreatic β cells, likely mediated by effector memory T (Tem) cells. CD2, a T cell surface protein highly expressed on Tem cells, is targeted by the fusion protein alefacept, depleting Tem cells and central memory T (Tcm) cells. We postulated that alefacept would arrest autoimmunity and preserve residual β cells in patients newly diagnosed with type 1 diabetes.
Methods:
The T1DAL study is a phase 2, double-blind, placebo-controlled trial in patients with type 1 diabetes, aged 12—35 years who, within 100 days of diagnosis, were enrolled at 14 US sites. Patients were randomly assigned (2:1) to receive alefacept (two 12-week courses of 15 mg intramuscularly per week, separated by a 12-week pause) or a placebo. Randomisation was stratified by site, and was computer-generated with permuted blocks of three patients per block. All participants and site personnel were masked to treatment assignment. The primary endpoint was the change from baseline in mean 2 h C-peptide area under the curve (AUC) at 12 months. Secondary endpoints at 12 months were the change from baseline in the 4 h C-peptide AUC, insulin use, major hypoglycaemic events, and HbA1c concentrations. This trial is registered with ClinicalTrials.gov, number NCT00965458.
Findings:
Of 73 patients assessed for eligibility, 33 were randomly assigned to receive alefacept and 16 to receive placebo. The mean 2 h C-peptide AUC at 12 months increased by 0·015 nmol/L (95% CI −0·080 to 0·110) in the alefacept group and decreased by 0·115 nmol/L (—0·278 to 0·047) in the placebo group, and the difference between groups was not significant (p=0·065). However, key secondary endpoints were met: the mean 4 h C-peptide AUC was significantly higher (mean increase of 0·015 nmol/L [95% CI −0·076 to 0·106] vs decrease of −0·156 nmol/L [—0·305 to −0·006]; p=0·019), and daily insulin use (0·48 units per kg per day for placebo vs 0·36 units per kg per day for alefacept; p=0·02) and the rate of hypoglycaemic events (mean of 10·9 events per person per year for alefacept vs 17·3 events for placebo; p<0·0001) was significantly lower at 12 months in the alefacept group than in the placebo group. Mean HbA1c concentrations at week 52 were not different between treatment groups (p=0·75). So far, no serious adverse events were reported and all patients had at least one adverse event. In the alefacept group, 29 (88%) participants had an adverse event related to study drug versus 15 (94%) participants in the placebo group. In the alefacept group, 14 (42%) participants had grade 3 or 4 adverse events compared with nine (56%) participants in the placebo group; no deaths occurred.
Interpretation:
Although the primary outcome was not met, at 12 months, alefacept preserved the 4 h C-peptide AUC, lowered insulin use, and reduced hypoglycaemic events, suggesting efficacy. Safety and tolerability were similar in the alefacept and placebo groups. Alefacept could be useful to preserve β-cell function in patients with new-onset type 1 diabetes.
Posted by: Fred - Sat-21-09-2013, 11:34 AM
- No Replies
This study suggests that the figures usually mentioned of around 20% of people with Psoriasis will go on to get Psoriatic Arthritis (PsA) could be wrong and it could be more like 30%
Quote:Background:
Prompt identification and treatment of psoriatic arthritis (PsA) in patients with psoriasis is critical to reducing the risk of joint damage, disability, and comorbidities.
Objective:
We sought to estimate PsA prevalence in patients with plaque psoriasis in 34 dermatology centers in 7 European and North American countries.
Methods:
Consecutive patients were evaluated by dermatologists for plaque psoriasis and subsequently by rheumatologists for PsA. PsA prevalence was estimated primarily based on rheumatologists' assessment of medical history, physical examination, and laboratory tests.
Results:
Of 949 patients evaluated, 285 (30%) had PsA (95% confidence interval 27-33) based on rheumatologists' assessment. PsA diagnosis changed in 1.2% of patients when diagnostic laboratory tests were added to medical history and physical examination. Of 285 patients given the diagnosis of PsA, 117 (41%) had not been previously given the diagnosis.
Limitations:
Bias may have been introduced by lack of standardized diagnostic criteria and unbalanced recruitment based on country populations.
Conclusions:
In this study, almost a third of patients with psoriasis seen in dermatology centers had PsA as determined by rheumatologists. More than a third of patients with PsA had not been previously given the diagnosis. Clinical evaluation alone is often sufficient basis for PsA diagnosis, but laboratory test results may be helpful in some patients.
I have wondered if the location of the exterior/skin psoriasis i.e. elbows, knees, fingers, toes etc. actually pinpoint/locate the area(s) of psoriatic/rheumatoid arthritis. Kind of a way for the immune system to notify us of impending or actual problem areas. Your comments please.
This is my perspective of my condition. The skin is the largest organ of the body. It mimics or reveals what is happening within. In other words, the skin tells what's within. I suffer from liver disease, enlarged spleen, enlarged heart, epstein bar, and arthritis. All affect the immune system. For over 35 years I have had pitted finger nails. Not one doctor had a diagnosis. Not until recently have I learned about psoriasis of the fingernails. Looking back I believe that my psoriatic condition had laid dormant in the early years only to raise it's ugly head in later years. I am now 56. The good, bad and the ugly is this: 1) The good: At least I know what I have. The clearer the target, the better the aim. The bad: 2) My immune system is compromised. In some ways just shot i.e. physically, mentally and emotionally. The ugly: 3) The obvious physical manifestation i.e. scaling, the red plague, chronic itching, insomnia
etc.
Positive Conclusion: 1) I know what I have 2) I know who my real friends are 3) I have increased empathy for others suffering from any autoimmune disease. 4) I have learned how to build up my immune system physically, mentally and emotionally.
Posted by: Fred - Tue-17-09-2013, 10:14 AM
- No Replies
Published in The British Journal of Dermatology this study looks at the effectiveness and safety of short-contact dithranol therapy in paediatric psoriasis.
Background:
Evidence on the effectiveness and safety of short-contact dithranol therapy in paediatric psoriasis is low and only based on retrospective data. Best results are achieved in a time consuming day-care setting.
Objectives:
To prospectively study the effectiveness and safety of short-contact dithranol therapy in paediatric psoriasis. In addition, the effectiveness, safety, duration of treatment and number of visits between regular day-care and day-care with telemedicine were compared.
Methods:
Data were collected from the prospective observational Child-CAPTURE registry of children with psoriasis. Effectiveness was analyzed by mean percentage improvement in Psoriasis Area and Severity Index (PASI). Safety was assessed by recording adverse events. Number of visits and duration of treatment were reported.
Results:
For all patients a mean percentage reduction in PASI score of -69.3% was found, with no significant differences between regular day-care and day-care with telemedicine. The only adverse event reported was irritation of the skin. Both the frequency of irritation during treatment as well as the mean duration of treatment did not significantly differ between the two groups. Patients with telemedicine had significant less number of visits
Conclusion:
This first prospective observational study demonstrated that short-contact dithranol therapy in paediatric psoriasis is effective and safe. Regular day-care and day-care with telemedicine are both equally effective. Telemedicine can be of additional value as it is less time consuming. Hopefully, it will therefore make dithranol treatment appropriate for a larger group of children with psoriasis.
Is there a connection between Psoriasis and Multiple Sclerosis? I realize that psoriasis is an autoimmune system malfunction. In addition to the plaque psoriasis with it's ugly exterior, itching etc. I suffer from restless leg syndrome along with a tingling, needles/pins sensation. Chronic insomnia for sure.
My question: any connection to multiple sclerosis?
Posted by: Danny - Sun-15-09-2013, 02:49 AM
- Replies (5)
Hi being a newbe here I thaught I might tell you about my experencecwith P.
I was first dianosed about 12 years ago by the derm at the VV hosp in Little Rock . at first at was location I felt like a grease pig . Made such a mess the wife and I got twin beds .
so I started looking on line to see what other people were doing it seemed like everyonecwas serching just like me.
so we bought a jet bathtub and then the hours of soaking in eoson salt baths with joy dish soap.
so now I'm getting to be a geeneypig with a lot of different med's and creams even oat meal baths . Now theyvsaid they was put me on MTX and it seemed to help a little till it really messed up my lungs big time yes they had a name for it called medical fibrouis caused from be alergic to MTX .
wellthen I was putcin my handicap scooter and 24 hour oxagon .told mei had only about on year to live .. .. that sceared the heck out of the wife and me.
then they put me on enbedal which didn' seem to help.
now 12 year later I'm on humeria that seem to be my merceral drug . no side effects and 95% P.free.
well I'm out of the wheel chair and and only oxagen when I need mostly when I sleep . I thank the good Lord everyday for giving my life back .
now you know the rest of the story .
I'm not too sure what kind of psoriasis I have. I get weird flare ups. Sometimes they're minor. (Red and white flaky) Other times they're red/yellow/ and when the stuff plagued on my neck falls off it's hard as a rock. Right now I have a very bad flare up. It's pussy and has hard yellow stuff falling off it and it hurts to move my neck. (I only have it on my scalp and on my neck.) My scalp seems to be the worst effected area and my neck is very minor. Would anyone recommend bag balm for this?
Posted by: Danny - Fri-13-09-2013, 03:27 AM
- Replies (8)
Hi
I'm new to this forum but a few of you might know me from other P.forums or maybe facebook .
The wife and I live in Greenbrier Arkansas and been married for 52 years . I love to restore old car and the wife makes dolls and has a page on facebook called
Sandy's Dollhouse .. .
I've had P. for over 10 years and been on all kinds of locations med's and now on Humeria for two years and 100% clear after a long battle with it.
I just want to say hi to my old friends and HOWDY to my new friends . drop by my facebook and visit . it under Danny Martin Greenbrier Ar.
a little later I will tell you about my experence with the lotions epson salt baths and my nightmare with the drug they call MTX .have a good night and thank you for excepting me .
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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.