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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: jiml - Wed-24-12-2014, 12:56 PM
- No Replies
Hi I have seen many new members looking through the introductions.
If you are one and are new to forums this may help you with your first post.
.
#1 From main menu click on Introductions
.
#2 Above the introductions is a button new thread
.
#3 Click on this a box will open
.
#4 On the left of the box second line down is Thread Subject write your description in here for instance " jimbos Intro" or whatever you want to name it
.
#5 Below that is a big box to click on and write your introduction when you are happy with it and want to see what it looks like
.
#6 At the bottom of the box past the green section it gives three options... Post thread ..... Preview post ... Or save as draft.
The first thing to do is click Preview Post ..... You can then see what others will see when posted... If there are changes to be made you can change it before you post it by clicking Post Thread
That's it its basic but simple if you follow the instructions.
If you want a more comprehensive instruction go here Starting a new thread
When you have done this and want to do more posts there is a tutorial here Posting A Reply
Posted by: Fred - Tue-23-12-2014, 21:37 PM
- No Replies
This study on Mice looked at the possibilities of a topical application of delphinidin modulating the pathological markers of psoriasiform lesions in flaky skin, delphinidin is a plant pigment, and also an antioxidant. It gives Blue Hues to to plants and fruits such as Delphinium, Cranberries, Pomegranates, the Cabernet Sauvignon grape. (Could be time to switch from the Merlot Fred)
Quote:Background:
Psoriasis is a chronic inflammatory skin disease characterized by hyperproliferation and aberrant keratinocyte differentiation. We have shown that treatment of reconstituted human skin with delphinidin, an anthocyanidin, present in pigmented fruits and vegetables, increased the expression and processing of caspase-14, which is involved in cornification. Delphinidin also increases the expression of epidermal differentiation marker proteins.
Objectives:
To determine whether topical application of delphinidin can modulate pathological markers of psoriasiform lesions in flaky skin mice and if this is associated with increased epidermal differentiation and a reduction in proliferation and inflammation.
Methods:
Five-week-old female homozygous flaky skin mice (fsn/fsn) were treated topically with delphinidin (0·5 mg cm−2 and 1 mg cm−2 skin areas, respectively), five times a week, up to 14 weeks of age.
Results:
Treatment of flaky skin mice with delphinidin resulted in a reduction in (i) pathological markers of psoriasiform lesions; (ii) infiltration of inflammatory cells; and (iii) mRNA and protein expression of inflammatory cytokines. Delphinidin treatment also increased the expression and processing of caspase-14, and expression of filaggrin, loricrin, keratin-1 and keratin-10. Furthermore, there was a decrease in the expression of markers for cell proliferation (proliferating cell nuclear antigen and keratin-14) and modulation of tight junction proteins (occludin and claudin-1). In addition, delphinidin treatment increased the expression of activator protein-1 transcription factor proteins (JunB, JunD, Fra1 and Fra2).
Conclusions:
Delphinidin could be a promising agent for treatment of psoriasis and other hyperproliferative skin disorders.
Source: NO LINKS ALLOWED
Funded by:
National Institutes of Health. Grant Numbers: R21 AT004966, RO1 AR059742
University of Alabama Skin Disease Research Center Pilot and Feasibility. Grant Number: P30AR50948
Posted by: Fred - Tue-23-12-2014, 21:22 PM
- No Replies
Although it's always said smoking is bad for psoriasis, I've never been a believer myself all giving up ever done for me was make me put weight on. (Though I will admit it makes breathing easier, but that's another issue) This study looked at smoking and systemic treatments for psoriasis and suggests smoking did not affect response to systemic treatment in patients with psoriasis.
Quote:Background:
Smoking is a well-established risk factor for developing psoriasis and is associated with development of more severe disease. Smoking cessation does not appear to result in clinical improvement of psoriasis. Whether smoking in patients with psoriasis impacts response to systemic therapy is unknown.
Objectives:
To determine whether smokers with psoriasis with or without psoriatic arthritis respond to systemic agents as well as nonsmokers do.
Methods:
We performed a retrospective review of patients with moderate-to-severe psoriasis with or without psoriatic arthritis seen at our institution, who were either active smokers or nonsmokers, and calculated changes in Physician's Global Assessment (PGA) scores after 3–16 months of systemic treatment. We also calculated the average number of systemic treatments tried per patient.
Results:
Sixty-six patients (46 nonsmokers, 20 smokers) met our inclusion criteria. Changes in PGA scores between baseline and 3–16 months after initiation of systemic treatment did not significantly differ between smokers and nonsmokers, nor did the average number of systemic treatments tried per patient. We detected a borderline significant trend in the percentage of patients who had significant outcomes after treatment, with a higher percentage of patients smoking < 10 cigarettes daily achieving target PGA scores compared with those smoking > 10 cigarettes daily. Limitations of our study include its retrospective nature and the relatively small number of patients meeting our inclusion criteria.
Conclusions:
In our retrospectively studied cohort, smoking did not affect response to systemic treatment in patients with psoriasis. A prospective study examining the complex relationship between smoking, psoriasis and response to systemic therapy is warranted to explore this association better.
Posted by: Fred - Mon-22-12-2014, 23:06 PM
- Replies (4)
This study looked at the risk of kidney disease in people with psoriasis and psoriatic arthritis, it suggests they are at higher risk and that the use of Nonsteroidal anti-inflammatory drugs (NSAIDs) increases that risk.
Quote:Background:
Few studies have examined the association between psoriasis and glomerulonephritis (GN) as well as chronic kidney disease (CKD).
Objectives:
To determine the risk of CKD in patients with psoriasis and evaluate the impact of the severity of psoriasis, comorbidities, and concomitant medications on the risk of GN and CKD in patients with psoriasis.
Methods:
We identified 4344 patients with psoriasis for the study cohort and randomly selected 13032 subjects as a control cohort. Each subject was individually followed up for a 5-year period to identify those who subsequently developed GN and CKD.
Results:
After adjustment with traditional CKD risk factors, psoriasis was found to be independently associated with an increased risk of CKD during the 5-year follow-up period (hazard ratio (HR), 1.28; 95% confidence interval (CI), 1.14-1.44). The increased incidence GN in psoriasis patients (HR, 1.50; 95% CI, 1.24-1.81) may partly contributed to the positive association between psoriasis and CKD. Both patients with mild and severe psoriasis had an increased risk of CKD and GN compared with control cohort and the risk increased with severity. Psoriasis patients with arthritis exhibited a higher risk of CKD than patients without arthritis (HR, 1.62 vs. 1.26). Among medication, nonsteroidal anti-inflammatory drugs (NSAIDs) have the strongest association with CKD in patients with psoriasis (Adjusted Odds Ratio, 1.69; 95% CI, 1.14-2.49).
Conclusions:
Psoriasis was associated with a higher risk of developing CKD and GN. High severity, psoriatic arthritis involvement and concomitant NSAIDs use further increased the risk of CKD in patients with psoriasis.
Posted by: Fred - Mon-22-12-2014, 20:33 PM
- No Replies
Psoriasis Club Forum Helpers
At Psoriasis Club we feel forums can be to over moderated, and we would prefer our members to moderate themselves in regards to their behaviour.
Fred deals with the everyday moderation in regard to editing, moving, or banning of threads, posts, and members should the occasion arise.
Forum Helpers are not moderators they are members just like you, but they are members that have had a lot of input on Psoriasis Club and have shown that they are always willing to help others. They are often on-line and can help with a range of questions, problems, and support for our members. They could help a new member get settled in, or they may be able to offer help in other ways like support when you need someone to talk to.
We know how difficult it can be sometimes to fit in when joining a new forum as a newbie, we also understand that you may have a problem as a member that you would feel more comfortable speaking to just one person about. And that is where the Forum Helpers come in; you can feel comfortable having someone trusted on Psoriasis Club that you can contact.
The Forum Helpers are volunteers and may not always be here but should you shout out somewhere one of them will find you and if they can’t help you themselves they will know who to get in touch with that can. Our current Forum Helpers are listed below and you can click a link to read their Bio, should you want to contact one of them you can start a new thread in [Group Specific] And ask for them by name. If you would rather your contact remain private you can contact them by Private Message (*Note Private messages can only be sent by members with 5 posts, so go here [Group Specific] and make 5 posts first.)
*Please remember the Forum Helpers volunteer their time and are not here 24/7 so please be patient if asking for a specific helper.
Psoriasis Club Forum Helpers:
Caroline
The fastest member on the board. One of the younger ones. I used to be running a lot when PsA hit me, so had to change to spinnning, I have hardly had psoriasis on my skin. By luck and being stubborn I ended up with the use of DMF (dimethylfumarates) the best which happened to me seen from the serious condition psoriasis can be. I made a study of DMF so can help you with that if you have any questions.
Can be quite direct in my reactions, that's because I am Dutch, if you think I disagree with Fred, then there is nothing to worry about. Kat
I'm the American member of the team. Although not an expert, I can always lend an ear and I'm willing to answer (or help find answers) to questions. I was first diagnosed with Erythrodermic Psoriasis in March of 2014 but that changed to a diagnosis of plaque psoriasis a month or two later. I have been on Acitretin (Soritane), UV and topical creams/oils as treatments. I've also been on Stelara and Cosentyx and currently starting Taltz.
I'm new here. While I'm fortunate enough to not suffer from psoriasis myself, my husband was recently diagnosed with PPPP and has been put on Stelara. We do lots of research on the disease, and read a lot of crap also. I spent some time over at the TalkPsoriasis/National Psoriasis Foundation forum, but got frustrated with all the spam, junk science, and mysticism, not to mention the people SHOUTING in ALL CAPS about diet being the ONLY WAY. I've been lurking here for a few days and it seems like a better place to be. So hi everyone!
I may be new to this forum, but my psoriasis is very old and familiar!
It mainly affects my hands, feet, elbows and knees. Have tried hundreds of things over the years. Treatments seem to work at first then after a few weeks I have a flare up again.
I also have psoriatic arthritis now. I'm only 34 years old. My joints have hurt (mainly my knees) for the last 10 years but I only had a diagnosis a few years ago.
The only thing that has worked for me (for both my skin and joints) has been Methotrexate. But have reluctantly stopped taking it now...
Anyway that's my situation at the moment. I look forward to finding out how everyone else copes with this horrible, horrible, incurable condition! Bah!!!
Charlotte
Posted by: Fred - Fri-19-12-2014, 16:53 PM
- Replies (2)
This study looked at back pain in patients with psoriasis, it concludes that there is a higher chance of lower back pain in people with psoriasis.
Quote:Objective
Psoriasis is a chronic inflammatory disorder affecting 3% of the population. The objective of our study was to provide prevalence estimates for inflammatory back pain (IBP) and spondyloarthritis (SpA) in those subjects with psoriasis using 2009-2010 NHANES data.
Methods
In the NHANES 2009-2010 sample set, 6,684 persons between 20-69 years of age were screened for participation and 5,103 answered questions regarding onset of back pain, location of pain and functional limitations. Dataset assembly and statistical analysis were performed using SASTM and SUDAAN™. Standard errors were estimated by Taylor series linearization. The equality of the prevalence estimates for selected variables were tested (univariately) at the α=0.05 level using a 2-sided Student's t statistic with appropriate degrees of freedom.
Results
148 persons had self-reported medically diagnosed psoriasis. The psoriasis group, versus the non-psoriasis group, had a significantly higher prevalence of axial pain using the 3-month duration criterion (31.1% vs. 18.9%; p=0.04) and alternating buttock pain (7.2% vs. 2.4%; p=0.03) and met IBP criteria – Berlin 7b and 8a – more frequently (p=0.04, 0.02 respectively). The prevalence of SpA was significantly higher in the psoriasis group versus the non-psoriasis group when using Amor or ESSG criteria (14.3% vs. 1.5%; p<0.001). Sudden-onset of axial pain was significantly higher in the psoriasis group (23.3% vs. 13.0%; p=0.01).
Conclusion
There is a higher prevalence of lower axial pain, IBP, SpA, and alternating buttock pain associated with a prior diagnosis of psoriasis. This data may influence the way psoriasis patients are approached in primary care and speciality clinics.
Recently, I have been giving a the diagnosis of Vasculitis and my dermatologist wants me to try compression socks. So far they absolutely suck. How is someone with bad hands suppose to put these on? Any bright ideas? Also, I have a sausage toe on the right foot. These sucks are absolute murder on both the toe and the back of my ankle. I am tempted to take some NSAIDs just to relieve the pain the socks have given me. Any suggestions?
Posted by: nsf_jay - Fri-12-12-2014, 09:44 AM
- Replies (9)
Morning,
Just stumbled upon this forum, Have had P for around 10 years now, scalp, elbows, knees and hands mainly, with the odd patch in other areas. I have been through all of the creams, all which have worked to start with then slowly lost their effectivness. UVB treatment has worked well each time i have had it, but within weeks of stopping the dreaded patches start to return.
Currently taking vitamin d3 and zinc after reading about their use on the net.
Its been about 3 weeks now, and the scale has completely gone, i had terrible trouble with my knees and elbows cracking and bleeding, but now they are smooth and supple. Its not a wonder cure, you can still see the areas of P, but it just looks like big areas of healed skin, but it doesnt hurt or bleed and looks 100% better than the scale.
Would like to hear of anyone elses experiance of vit d and zinc
i started fumaderm 6 weeks ago, my stomach is in bits i am soiling myself a lot which i can help too, i am on 2 blue tablets, my psoriasis isnt any better, i am going off them tomorrow, i am covered in psoriasis, any ideas as i heard seaweed suppose to be great
Posted by: Kat - Thu-11-12-2014, 20:17 PM
- Replies (7)
Insurance in the States can be quite complicated, so this is a general guide to help those wanting information.
First, the new Affordable Care Act (aka ObamaCare). The official site is at: healthcare.gov
Through the Marketplace, people who previously couldn't afford insurance should be able to find a plan that fits there needs. Some states have their own Marketplace while others use the one set up by the Federal Government. This link provides where you would need to go (by state) to access the Marketplace.
You can also call your local governement agency for information (usually through Family and Children Services) or through this site:
localhelp.healthcare dot gov
and also by calling the marketplace helpline at 1-800-318-2596.
Enrollment is November 15, 2014 - February 15, 2015.
For people who are able to acquire health insurance via their workplace, your human resource department is the best place to start for information. One thing that continues to confuse people is whether they want an HMO plan or a PPO plan (depending on what is offered, there are many different plans available so it's impossible to cover them all). So if you have a choise between HMO or PPO, this short description may help.
HMO - Health Maintenance Organization. This plan is where doctors either work or contract for the HMO. You are usually required to only see doctors within the HMO network (unless it's an emergency.) You usually are required to have a PCP (Primary Care Physician) who will refer you to other doctors as needed. Premiums are usually lower for HMO plans. Your deductible and co-pays are also usually lower but you may not have an out of pocket limit.
PPO - Preferred Provider Organization. With a PPO you do not have to have a PCP (Primary Care Physician) and you pay less if you use doctors within the PPO network. But you are not limited to certain doctors (however, if you go out of network you will most likely pay more and MAY have to file the claim yourself, always ask!) The deductible usually runs a bit higher but there is also (usually) a limit on your out of pocket expenses. You also are not required to have a referral from your doctor to see another physician.
That is the general difference between the two most common health plans. I used the word "usually" a lot as there are so many plans available, there isn't a "one size fits all" answer.
Medicare Insurance is available at age 65 or sooner if you are declared disabled by the government. Their website is:
medicare dot gov
Also, Fred had this information posted, adding it to this post since it's great info:
Adalimumab - Humira Say on their website "If you cannot afford your medication, contact:
pparx dot org or call the toll-free phone number (1-888-4PPA-NOW) for assistance.
Etanercept - Enbrel Have a dedicated payment support page:
enbrel dot com/pay-for-ENBREL.jspx
Ustekinumab – Stelara Also have a dedicated payment support page:
janssenprescriptionassistance...assistance
Posted by: Fred - Tue-09-12-2014, 20:27 PM
- Replies (14)
Is this the start of the UK getting a better deal for psoriasis patients? We are often talking about the cost of treatments and saying how it's time the governments started taking control and dictating the price. Well it looks like it's time to pat the British government on the back for working a deal for the use of Stelara in psoriatic arhtritis.
I reported at the beginning of the year that the UK was the only country not to accept that Stelara can help psoriatic arthritis, you can read that here: England rejects Stelara for psoriatic arthritis But it's been reported that a deal has been done that could change that decision.
Quote:
The National Institute for Health and Care Excellence (NICE) is set to backtrack on negative guidance for a drug for psoriatic arthritis after agreeing a discount with its manufacturer.
NICE, which provides healthcare guidance for the NHS in England and Wales, issued a recommendation in May this year against extending the use of Janssen's Stelara (ustekinumab) to cover active psoriatic arthritis, a serious, progressive condition that can lead to progressive erosion of the joints.
However, the health watchdog has now issued new draft guidance that recommends the drug in this indication in “certain circumstances”, although only if Janssen provides the drug at a discount through a patient access scheme.
The circumstances required by NICE include if a person with psoriatic arthritis is unable to use one of several drugs already recommended for NHS reimbursement, or if a person has been treated with one or more of these drugs.
The medicines referenced by NICE are Janssen's own Simponi (golimumab) and Remicade (infliximab), AbbVie's Humira (adalimumab) and Pfizer's Enbrel (etanercept).
The draft guidance states that if a patient fits into the criteria outline by NICE, and Stelara is provided at the agreed discount through the patient access scheme, then the NHS should fund treatment with the drug.
Final guidance is still pending, however, and until then NHS bodies should make decisions locally on the funding of Stelara.
Peter Barnes, medical director at Janssen's UK subsidiary, said he was “pleased” with the new guidance.
“NICE's decision supports Janssen's view that ustekinumab offers value to the NHS as well as being clinically valuable. We are delighted that patients living with this condition may have access to another treatment option.”
Stelara is already recommended by NICE to treat the skin disease plaque psoriasis.
Source: pmlive.com
This is certainly good news should it work, and hats off to the UK government for giving it a try.
Looking for a little assistance. I've had psoriasis for the past 38 years on and off (mostly on for the past 16 years). After each level of treatment has effectively lost it's impact on my condition I progress to the next (topical, UVB, PUVA) and now I'm being lined up for a Systemics Clinic on the 15th December.
The drugs being mentioned are Fumaderm, Metatraxate and Ciclosporin.
What I'm looking for are positive stories in relation to Fumaderm and side effects. It would appear from reading peoples blogs that the side effects(gastro and higher frequency of infections due to lower immune system defences) are a given.
I would like to hear from people who have taken Fumaderm who experienced minimal side effects.
I know us P sufferer's are different with our lotions & potions etc but i found by mixing pine oil into the coconut oil & covering my P has reduced the scaling right down big time.
Afternoon all,
joined up on here as i have had P for 24 years now & wanted to see what happens on here & if possible, give some poor sod some advice about P if i can help ?
I am hoping to get the Ustekinumab jab soon as i feel like a dog with fleas at the moment.
Sorely tempted to use a large wire brush to relieve the itching
Hi all, I am a lost soul from another psoriasis site that appears to have closed down. I did not know that you existed until I was introduced to your site by one of your members.
I am 67 years old and started with P and PA in my mid 20s though the PA started a little later than the P. I have been in hospital three times with the P when it got to a stage when it almost covered me, in last 40 odd years I must have had most treatments known to man in fact when I first went in hospital I had tar baths which just shows how far we have come in that time.
I am now taking Stelara in 90mg doses and has given me 99.9% clearage however in the past I was on MTX for nine years ,six years 25mg oral and three years by 20mg injection. I have also had Cyclosporine which I had a very bad reaction to and another one that slips my mind but caused my toe nails to grow sideways through my toe, it's a great problem P !!.
I will not even go into all the lotions and creams I have used as I am sure that everybody has a similar story but I am looking forward to looking round your site and having a chat .
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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.