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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
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
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
Could anyone advise me of what I can expect with my nails? I'm in sad shape. I have three toenails left and only one baby fingernail not affected.
I've lost most completely and in their place are thick plaques. In time (when this ever does go into remission) will those plaques simple fall off or will the nails grow out and push them off gradually? The words ugly just don't seem to describe them enough.
Any tips on getting them smoother. I find the feel of even emery boards really awful. I do keep them well treated with the Dovobet and moisturizers but I was wondering there were any other suggestions some of you may have.
May the God of Skin production bless us all with starvation. Smile
I've never joined a forum before so please forgive my fumbling as I navigate this new experience. To begin a little about me.
I retired just about a year ago and by mid spring I finally acknowledged that was something odd about this spot on my lower back that just wouldn't heal. Family became concerned so by the end of July I give in and went to the local clinic where a very young on-call doctor told me not to worry it wasn't cancer it was just an age spot. I smiled and thanked him but I figured there was more to this then a cranky age spot so I made an appointment to see one of the regular doctors.
Meanwhile I noticed a big toe nail had decided to start to lift and curl. It had been ridiculously hot here in NS so I thought, Dear Lord, I must have some kind of nail fungus... I'm a bit horrified at the thought and I pretty much cleaned and disinfected every spot in my house. I certainly never connected the two problems. I have a large selection of fungal creams if anyone needs some.
I finally did get to see the regular doctor and she looks at my back and says "I have no idea what that is"... I blink because I didn't find that particularly helpful. There is a long pause and I suggest perhaps a biopsy. She doesn't think it is a good idea to do a biopsy because if it is cancer then a biopsy may make it grow faster, but she will make a request for a dermatologist to see it. She gives me a script for a steroid cream. Keep in mind, this is early August of 2016. A week later I'm told that my appointment with the dermatologist is February of 2017. I still shake my head at that. Seriously, this is the God's truth. If that puppy had of been cancer this would have been a eulogy. I smile now but at the time I was completely baffled.
Meanwhile that toenail is quite a site and I have to get what is left of it removed. The spot on my back has spread like crazy and now there are more on my lower legs and arms. So back I go and insist on a biopsy which they did do. A few days later I am told it is psoriasis and that they can get me into a dermatologist by October. Between August and my first appointment in October I have them everywhere.
And now since October and the start of Dovobet and light treatments (twice a week) it has moved to my scalp, ears, forehead but my legs are the worst. I only have two toenails and two fingernails left. Most of toes are purple from arthritis along with three of my fingers. The treatments are controlling the scaling and itching most of the time. In between all of this they discover I have high liver counts and therefore no drugs until they can determine why. Waiting for liver biopsy and catscans for the out come of that.
So I guess that is my mess in a nutshell. Sorry to lay it all out there but I guess I needed to just yell/scream/vent to someone. That's it for a start. ... got to rub more stuff on my body. Good thing I'm retired, gives me lots of time to do that.
Posted by: Fred - Thu-12-01-2017, 17:19 PM
- Replies (1)
This study looked at 3,615 German psoriasis patients using systemic treatment over a 10 year period.
Inequality between age groups has been demonstrated in the prescription of biologics, yet systematic real-world data about age-related differences in psoriasis care are missing.
To investigate disparities in psoriasis characteristics by age groups and to identify potential impact on psoriasis health care.
Patients and Methods:
analysis included 3,615 patients from the German Psoriasis registry PsoBest, which observes adult patients with moderate to severe psoriasis or psoriatic arthritis (PsA) on systemic treatment over a time period of 10 years.
With 2,376 participants (65.7%), the majority of patients was assigned to the age group 35–64, followed by 776 (21.4%) and 463 (12.8%) for the age groups 18–34 and 65+, respectively. Psoriasis vulgaris was the most frequent form of psoriasis with nearly 90% patients affected. Appearance of psoriasis forms did not differentiate significantly between the age groups except for erythrodermic psoriasis, which was more frequent in the elderly than in patients aged 35–64 (1.9%, p ≤ 0.048). Nail psoriasis appeared significantly more often in patients aged 35–64 (55.5%, p ≤ 0.001) and also showed the highest number of nails involved (6.9 ± 3.3). PsA was less frequent in the age group 18–34 (9.5%, p ≤ 0.001). This group showed the highest affection of head psoriasis (85.8%) compared to the elder age groups (p ≤ 0.001). Biologicals were used significantly less in younger patients (16.2%) compared to the age groups 35-64 (23.9%, p ≤ 0.001) and 65+ (21.8%, p ≤ 0.042).
Mid-aged patients show higher rates of PsA and nail psoriasis which may explain age dependent disparities in health care including the use of systemic treatment.
I have read this on another website and I thought I would quote it here and add my comments as it seems to make it look as if Fumaderm is a dangerous drug that should be avoided, which certainly is far from the reality.
As a Fumaderm user and very happy with the way it has worked for me for for the last 5 years, I was rather annoyed to see it dismissed as something not safe to consider.
Quote: An oral prescription drug called Fumaderm, which contains fumaric acid esters, has been used for decades in Europe to treat severe plaque psoriasis.
In the United States, however, the U.S. Food and Drug Administration (FDA) has not approved Fumaderm or any other fumaric acid ester drugs, but that hasn’t stopped some psoriasis patients from obtaining them with potentially serious consequences.
The drug works by inhibiting the immune system’s T cells. Taking it without a doctor’s supervision can lead to dangerously low T cell counts, as well as side effects including gastrointestinal problems, Ryan said.
I will not name the support website this came from, but the first thing this website says is that it is already been used for decades in Europe, so it is obvious that it is a recognised prescription drug, with a good effect, otherwise it would have vanished already.
The facts are that any drug that is taken without medical supervision can be dangerous, this is also the case for Fumaderm if the use is not monitored.
Everyone who takes Fumaderm in Europe and I include the UK is (and should) be monitored by blood tests and regular hospital visits. If this is not done it's not a fault of the drug, more the lack of following procedure and a fault of the prescribing doctor. The patient needs to be alert to that. Again, this is the case for every medication, including the brand new biologicals, of which the long term effects are not clear yet. While the long term effects of Fumaderm are known, there are no long term effects found in all the decades that it has been available.
The article is wrong as the FDA in America has an approved fumaric ester drug ( Tecfidera) which is prescribed to MS patients in America and is also available in other countries for MS Management ,... so it is extensively used as it is effective for auto immune diseases like MS (and Psoriasis)
There are already very positive results in trails with a new version that will be produced by Allmiral (Spain), with this medication, monitoring will also be essential, but with monitoring it is one of the safest drugs around. Not to mention the other possibilities that DMF, the working substance has, on: Lupus, Crohns, Sarcoidosis, bed sores, inhibiting the growth of tumors, and so on, the possibilities of this substance seem to be endless.
It's a fact that it reduces the working of some of the interleukin IL-17 cells, that is the reason it works ...it works in a similar way targeting the same cells as some of the newer biological drugs that are available. But that is not all, at the same time it modulates much more regarding the support of the better functioning of the mitochondria and its energy cycle, essential for life. On the gastrointestinal side effects, yes, you can be get them , but so what? They are only inconvenient and in no way harmful.
One last remark on the lowering of the lymphocytes, , when starting the therapy they are likely to go down, that is why the start must be slow, but when the body gets used to the therapy the lymphocytes will come back again to their original values. If not, the therapy can be stopped, or reduced
Posted by: Fred - Tue-10-01-2017, 20:49 PM
- No Replies
Another bio in the pipeline for psoriasis patients.
To assess safety, pharmacokinetics (PK) and clinical efficacy of bimekizumab (formerly UCB4940), a novel humanized monoclonal antibody and dual inhibitor of interleukin (IL)-17A and IL-17F, in subjects with mild plaque psoriasis.
Randomized, double-blind, first-in-human study of bimekizumab in 39 subjects who received single-dose intravenous bimekizumab (8–640 mg) or placebo (NCT02529956).
Bimekizumab demonstrated dose-proportional linear PK and was tolerated across the dose range assessed. No subject discontinued due to treatment-emergent adverse events and no severe adverse events were reported. Bimekizumab demonstrated fast onset of clinically-meaningful effects on skin of patients with mild psoriasis as early as Week 2. Maximal improvements (100% or near 100% reductions from baseline) in all measures of disease activity were observed between Weeks 8–12 in subjects receiving 160–640 mg bimekizumab. The duration of effect at doses ≥160 mg was evident up to Weeks 12–20 after a single intravenous dose, dependent on endpoint.
This is the first study to demonstrate the safety, tolerability and clinical efficacy of a dual IL-17A and IL-17F inhibitor, in subjects with mild psoriasis. Bimekizumab showed fast onset of clinically-meaningful efficacy by Week 2, with a maximal or near-maximal magnitude of response that was maintained up to study Weeks 12–20. These findings support the continued clinical development of bimekizumab for diseases mediated by both IL-17A and IL-17F, including psoriasis.
I debated whether I should join this forum or not. The reason I considered not joining is because I do not want to think about my psoriasis all the time. Then I thought maybe the support would be helpful since most people do not understand what it is like to have psoriasis.
I am in my early 40`s. I have had psoriasis since I was 13. I first discovered it on my scalp and wondered what the flaky white spots were that continued to appear. We made a trip to the dermatologists and I was diagnosed with psoriasis. I have always wanted to keep this from everyone. To this day my closest friends do not know I have psoriasis. I think I am fortunate that I have been able to hide it from most people.
Through my teenage years I only experienced it on my scalp so besides the itching I was able to live with it. When I hit about 22 I started losing my hair. I panicked. First about the hair loss and then about the exposure to my psoriasis. I ended up developing anxiety and I had to go on some drugs. It led to some minor depression and more drugs. I ended up going to counselling and had a wonderful counselor who helped me sort through things and I got off the anti-depressants and anxiety pills.
Things progressed well through my early 20`s. I had one bad stint where I started to get blotches on my forehead. It was made worse by some chemicals at work. I had some anxiety about it but some topical stuff helped. At about 24 I got one spot on my chest that was annoying but relatively small about the size of dime.
I met my wife soon after that and she had a sister with psoriasis so that made things easier. In my early 30`s I started to get plaque on my shins. In my mid-30`s it started to get worse with it behind my ears. Eventually it started to impact my self esteem.
I tried various stuff. Cyclosporin was great for about a year. It cleared me almost completely. Then it stopped working. Then we tried methotrexate. It did not work at all. By this point I had a lot of spots on my body to the point where I was very self conscious about wearing shorts and swimming. I had a good medical plan so my doctor prescribed Humira. This was basically a miracle drug for me. I was on it for 2.5 years and I was completely clear!! Awesome. I felt guilty about the cost of it despite the fact that I was not paying a thing. Then I lost my job. Looking for a new job I was seriously concerned about what it meant for my psoriasis. I found a new job and my dermatologist recommended light therapy at another doctor`s office near my work. He has the long wavelength machine. This was actually my third time using light. I used it with moderate success at my dermatologist near my home. I also used it when I had guttate psoriasis after being sick.
So, this almost takes us to today. I have been using light therapy for 3 years. It has worked very well for me. Almost to the point of remission. I am lucky and I have to remember it. Instead I think about things like why do I have this? What will happen in the future? What if I do not have a medical plan? How will I travel having psoriasis?
I am currently working my level back up because I am experiencing a minor flareup. This has me thinking about it more. Tomorrow I go for a check up with the dermatologist. He has average bedside manner. I prefer my local guy but he knows his stuff. He tells me that light is the best thing for me right now with the lowest risk.
I've been taking Otezla off and on for about 6-7 months. Recently I've been getting the nausea side effects and minor headaches. The headaches I can deal with, but the nausea has been kicking my butt. Normally I take Pepto or Alka Seltzer to subdue the upset stomach, which some times doesn't really help. I've tried taking with food as well and same results. I like the Otezla because it's a lot easier and "safer" than the biologicals. I've used Enbrel, Humira, PUVA, PUVB, Desonide, Talconex, and other various rx steroid creams. I've had good clearance with the Otezla, but want to know of any tips any other users have done to help with the nausea (IE: types of foods, when to take first pill, etc.) I understand everyone has different reactions and the solutions might be different for each individual. But anyone helpful advice, would be appreciated.
Hey all – I have inverse genital psoriasis. I have tried everything under the sun on it. Tea Tree oil, coconut oil, hydrocortisone, steroid creams, etc. I’ve been getting the Xtracs laser treatment for at least four months and no major changes. I have huge flare ups and it even bleeds and crust over. My Xtracs technician thought it could be infected most recently. It is very painful and embarrassing when you are trying to be intimate. I’ve been using the condom idea also (filling it up with ointment). Any thoughts? Anyone else used the Xtracs laser and had any luck? Anybody have any luck with anything working
Hey all – I have inverse genital psoriasis. I have tried everything under the sun on it. Tea Tree oil, coconut oil, hydrocortisone, steroid creams, etc. I’ve been getting the Xtracs laser treatment for at least four months and no major changes. I have huge flare ups and it even bleeds and crust over. My Xtracs technician thought it could be infected most recently. It is very painful and embarrassing when you are trying to be intimate. I’ve been using the condom idea also (filling it up with ointment). Any thoughts? Anyone else used the Xtracs laser and had any luck? Anybody have any luck with anything working???
Just a quick question about Stelara.
I have been monitoring any side effects over the last 4 Stelara injections and at week 8 in the 12 week cycle I have had a migraine. This has happened every time in the last 4 injections,has anyone else had this problem.
Posted by: Fred - Tue-03-01-2017, 20:44 PM
- Replies (2)
This study suggests that children with psoriasis should be screened for psoriatic arthritis.
National Institute for Health and Care Excellence (NICE) guidelines recommend annual screening for psoriatic arthritis (PsA) in all patients with psoriasis. Currently, no validated assessment tools have been recommended for screening for juvenile PsA (JPsA).
To determine dermatologists' practice when assessing children's joints and explore the challenges dermatologists experience when looking for joint disease, in order to inform future strategies to improve early detection of arthritis.
Structured telephone interviews were undertaken with dermatologists identified through the British Society of Paediatric Dermatology. Percentages for binary and categorized responses were calculated. Thematic content analysis was used to generate a set of core themes across the interview data.
Of the 41 consultant dermatologists contacted, 23 agreed to be interviewed. Of these, 78% (18/23) reported they routinely ask about joint disease. Only 13% (3/23) routinely examine the joints of children with psoriasis. Overall, assessment for JPsA lacked a structured, evidence-based approach. The average confidence rating for assessing joint disease was low (score of 3). The two key barriers described for detecting arthritis were a lack of experience and training, and subtle or difficult to detect signs. The two main suggestions for improving detection were the introduction of an assessment tool/guideline and increased clinical experience and training.
There is a clear need for dermatologists to use a standardized approach for screening and to increase their confidence in paediatric musculoskeletal examination. In this article, we provide guidance on screening for psoriatic arthritis in children based on our clinical experience.
Posted by: Fred - Tue-03-01-2017, 20:38 PM
- No Replies
This study looked at the occurrence of metabolic disorders in children with psoriasis.
The prevalence of cardiovascular and metabolic disorders in paediatric patients with psoriasis is not well established.
To conduct a meta-analysis of previously published studies dealing with the occurrence of metabolic disorders in children with psoriasis.
Data from 7 studies with a total of 965 children with psoriasis were analysed using a random effects model.
Prevalence of metabolic syndrome (MetS) was significantly higher in patients with psoriasis than in healthy controls (HCs). In most studies, significantly decreased levels of high-density lipoprotein (HDL) cholesterol were found in children with psoriasis. Mean level of HDL cholesterol in patients with psoriasis was 2.05 mg/dL lower than in HCs. Patients with psoriasis and HCs did not differ significantly in their mean triglyceride levels, although the difference was at a threshold of statistical significance. Mean level of fasting glucose in children with psoriasis was 5.75 mg/dL higher than in HCs (P < 0.01). The two groups did not differ significantly in mean waist circumference or in systolic and diastolic arterial pressures.
Decreased levels of HDL cholesterol and increased concentrations of fasting glucose may represent very early stages of MetS in children with psoriasis. However, a large population-based study is needed to establish the relationship between psoriasis and MetS in children, including the environmental, genetic and immunological factors leading to their co-occurrence.
Hello from FL. I'm a 55 yo female and still work part time as a RN case manager. I've had Psoriatic Arthritis, Psoriatic nails and skin Psoriasis for 7 years. I'm currently taking MTX, Otezla, prednisone and getting ready to start Cosentyx. I've been on many different Biologics over the years. My hands, feet,sternum and SI joints are mainly affected and have just 1% skin involvement. I'm here to learn more about PsA and how to slow progression. Julittle
I am new to the group, I am looking for alternative medication for my psoriasis (its bad at this stage) ..... I have been in Dubai, where it was easy to get my treatment (Humera)
- being back in UK for 3 month it has gone bad, bad bad - without medication as there is a very long waiting process to get to a doctor here
I have been doing salt baths - not sure if it is doing better or aggravating it
Hi Folks - I've recently started with Fumaderm now on 120 mg X 3 times per day .....see my consultant on 18 th Jan.....with upping the dosage I assume ........not real visible improvement yet but some of the " anger " has gone from the soreness on both calfs.
Just a question /advice from you that have used this medication .....I shall be out of the U.K. early April until abt 26 June ......so I will not be able to have blood tests during this period ......will this be ok or any suggestions thanks Vince
I've been on Acitretin for about 2 years and my psoriasis has never been better. The worst side-effect I am experiencing, and it has become almost an obsession for me, is my dry lips. It's not even so much that they are dry, it's as if the skin cells are overproducing. I have taken to trimming the excess dry skin cells carefully with a small pair of scissors, but an hour or two later, it needs done again.
I have tried every kind of lip balm, even "Acnibex" which is supposedly specifically for the dry lips caused by retinoids, but nothing brings them under control.
How is everyone else dealing with this? It's getting to the point that I feel like giving up on the Acitretin, even though I know the psoriasis would come back.
If like me you have had the joy of blood tests over and over due to the meds you have been taking, I wonder if like me your iron levels were on the lower end of the scale?
Yes being female does tend to play about with iron levels, but through my time on meds and then pregnancies I have always been anemic or close to it.
I have read in a book, (sorry can't remember the name of it, but if anyone is intrested I shall try to find out) that psoriasis and anemia are linked!
I also found it intresting that over my many blood tests, pregnancies and general life as a psoriasis suffer that only one GP has ever flagged up this link to me.
If my tiredness levels are still a bit rubbish as my 5 month old starts to wean then I think I may discuss my iron levels more with my GP and pick his brains on it a bit more.
(Im waiting to see if I get called in soon because of the vast amount of moisturiser Im requesting)
Posted by: Fred - Sat-31-12-2016, 11:58 AM
- Replies (16)
I would like to wish all our members and quests a very Happy New Year and say a special thank you to our active members for making Psoriasis Club what it is. I couldn't do it without you.
Psoriasis Club will be celebrating it's 7th birthday this year and we have a strong base of friendly members from around the world always willing to share and support others. All new members are made very welcome (as long as they haven't come here to spam or troll) and it's always nice to see our new members joining in.
Ok I won't take up to much of your time, so I'll finish with this.
Some Stats from 2016:
Psoriasis Club is still growing strong and we are building up a very friendly community.
Active members: 868 *Inactive accounts are deleted
Number of threads: 3,927
Number of posts: 92,097 *Visible posts/threads depends on which group you are in.
New stuff added in 2016:
We have moved to a faster more efficient server.
We have installed https to make your log-in information safer.
There is a new editor for the Psoriasis Club newsletter See Here!
Promises Kept during 2016:
No requests for donations.
The Future of Psoriasis Club:
The future is looking very good for Psoriasis Club and it's members.
We are still the only true independent psoriasis website.
We will never be money driven.
I have put funding in place to take us up to 2020.
We are here to stay, and there are things in place to keep it going as it is should anything ever happen to me.
I want to take this opportunity to thank you all for your continued support. It's you the members that make it what it is and it's you that drives me to keep Psoriasis Club going.
I hope you all have a happy and healthy 2017. If you haven't logged-in for a while please do pop in and tell us how things are going.
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