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Psoriasis Club is a friendly on-line Forum where people with psoriasis or psoriatic arthritis
can get together and share information, get the latest news, or just chill out with others who understand. It is totally
self funded and we don't rely on drug manufacturers or donations. We are proactive against Spammers,
Trolls, And Cyberbulying and offer a safe friendly atmosphere for our members.
So Who Joins Psoriasis Club?
We have members who have had psoriasis for years and some that are newly diagnosed. Family and friends of those with psoriasis
are also made welcome. You will find some using prescribed treatments and some using the natural approach. There are people who
join but keep a low profile, there are people who just like to help others, and there are some who just like
to escape in the Off Topic Section.
Joining Couldn't Be Easier: If you are a genuine person who would like to meet others who understand,
just hit the Register button and follow the instructions.
Members get more boards and privileges that are not available to guests.
OK So What Is Psoriasis?
Psoriasis is a chronic, autoimmune disease that appears on the skin. It
occurs when the immune system sends out faulty signals that speed up the
growth cycle of skin cells. Psoriasis is not contagious. It commonly
causes red, scaly patches to appear on the skin, although some patients
have no dermatological symptoms. The scaly patches commonly caused by
psoriasis, called psoriatic plaques, are areas of inflammation and
excessive skin production. Skin rapidly accumulates at these sites which
gives it a silvery-white appearance. Plaques frequently occur on the
skin of the elbows and knees, but can affect any area including the
scalp, palms of hands and soles of feet, and genitals. In contrast to
eczema, psoriasis is more likely to be found on the outer side of the
joint.
The disorder is a chronic recurring condition that varies in severity
from minor localized patches to complete body coverage. Fingernails and
toenails are frequently affected (psoriatic nail dystrophy) and can be
seen as an isolated symptom. Psoriasis can also cause inflammation of
the joints, which is known as (psoriatic arthritis). Ten to fifteen
percent of people with psoriasis have psoriatic arthritis.
The cause of psoriasis is not fully understood, but it is believed to
have a genetic component and local psoriatic changes can be triggered by
an injury to the skin known as Koebner phenomenon. Various
environmental factors have been suggested as aggravating to psoriasis
including stress, withdrawal of systemic corticosteroid, excessive
alcohol consumption, and smoking but few have shown statistical
significance. There are many treatments available, but because of its
chronic recurrent nature psoriasis is a challenge to treat. You can find more information
Here!
Got It, So What's The Cure?
Wait Let me stop you there! I'm sorry but there is no cure. There are things that can help you
cope with it but for a cure, you will not find one.
You will always be looking for one, and that is part of the problem with psoriasis There are people who know you will be
desperate to find a cure, and they will tell you exactly what you want to hear in order to get your money. If there is a
cure then a genuine person who has ever suffered with psoriasis would give you the information for free. Most so called cures
are nothing more than a diet and lifestyle change or a very expensive moisturiser. Check out the threads in
Natural Treatments first and save your money.
Great so now what? It's not all bad news, come and join others at Psoriasis Club and talk about it. The best help is from accepting it and talking
with others who understand what you're going through. ask questions read through the threads on here and start claiming
your life back. You should also get yourself an appointment with a dermatologist who will help you find something that can
help you cope with it. What works for some may not work for others
Posted by: Fred - Wed-01-10-2014, 11:08 AM
- No Replies
There are few threads about psoriasis ans sexual dysfunction on Psoriasis Club, but this one is the first study identifying body areas other than genitals as potentially related to sexual dysfunction in psoriasis patients.
Quote:Introduction:
Psoriasis may significantly impair sexual function. Depression and organic factors appear to play a key role in this relationship. However, beyond genital psoriasis, the importance of the distribution pattern of the disease has not been considered.
Aim:
To investigate the role of the distribution pattern of psoriasis in sexual dysfunction.
Methods:
A prospective case series study was carried out on 133 patients with moderate to severe psoriasis.
Main Outcome Measures:
The participants completed the Massachusetts General Hospital-Sexual Functioning Questionnaire, the Hospital Anxiety and Depression Scale, and the Self-Administered Psoriasis Area and Severity Index.
Results:
Forty-four women (mean age 42.0 ± 14.1) and 79 men (mean age 47 ± 11.7) were included in the study. Psoriasis lesions on abdomen, genitals, lumbar region, and buttocks in women and chest, genitals, and buttocks in men were associated with an increase in sexual dysfunction. Multivariate logistic regression analysis showed that the involvement of these specific areas may be independent risk factors for sexual dysfunction in patients with moderate to severe psoriasis.
Conclusions:
This is the first study identifying body areas other than genitals as potentially related to sexual dysfunction in psoriasis patients. The results suggest that the assessment of sexual dysfunction and the involvement of these body areas should be considered as disease severity criteria when deciding on treatment for psoriasis patients.
Posted by: Kat - Tue-30-09-2014, 15:15 PM
- Replies (18)
I know a lot of people here prefer one over the other. I'm currently on Acitretin which other than topicals and UVB is the only treatments I've tried. I haven't gotten the results (so far) I had hoped for, it doesn't seem to be helping all that much with the psoriasis on my scalp. So, I'm preparing for my next dermatologist visit, which is a month away. I'm trying to get better educated on treatments and will be the first to say that I do NOT have a scientific mind so a lot of technical talk on meds flies right over my head. So here goes:
Medications for psoriasis.... if I understand correctly they are fighting the symptoms of psoriasis. They can help slow down cell growth but are more designed to help with the redness and flaking and hopefully decreasing it. Once you get it under control, the meds can help keep you from flaring, perhaps because of lessening the symptoms and thereby helping a body keep it under control? The side effects vary by person and can be mild or harsh. I only know about Acitretin, but since it can "damage" a baby if the woman is pregnant, one can't help but wonder what exactly they are putting in their system.
Biologics.... Seem to work the "best" and I can only base this by reading this forum and also since my dermatologist said it's an option but in his case (or perhaps insurance) it's the last treatment he goes to. Since he said he tries to start at the lowest treatment and work up to see what works, I take it that biologics (in his opinion) is the highest treatment, but the one with the highest risks. My guess (again, I guess a lot) is that would be because it can affect the immune system. I know (from here) that there are side effects (mostly flushing) but no one (here) seems overly worried about that. However, if I understand correctly, the biologics target the T-cells (not that I know what those are) and directly fight the disease where it is started.
I'm not trying to say one is better than the other, first what works best for each individual is going to be different. What I'm trying to do is understand these medications. I want to understand enough to ask the dermatologist questions and to be part of what (IF it becomes necessary) the next step would be for me. I'm not trying to have this be a debate over one being "better" than the other, but I would like to know for those who prefer one over the other, why it is they think it is the better choice for them. Also, if so inclined, why you wouldn't use one or the other.
Hi there,
well not long back from the hospital and the consultant was willing to listen. She has recommended one of three drugs: Acitreten, Ciclosporin & Methotrexate. So she explained a bit about them, (which scared the life out of me) and asked me to pick which one I preferred!
I said I needed time to make a decision as these are pretty heavy duty. So I will be seeing her again in a fortnight and in the meantime I have had blood tests done and have to do another for my kidney function.
I know I should be jumping for joy, that they are finally willing to look at this seriously but the side affects seem horrible. She has also said I would only be on Acitreten or Ciclosporin for about 6 months then I would come off and that way if I had a bad flare up I would be able to go back on. So the only one longer term would be Methotrexate.
I really feel I am between a rock and a hard place. I can't carry on the way I have, but I am really worried by the potential side effects of these drugs. I know they don't happen to everyone but it seems quite a risk , when given as she says, when I come off them the psoriasis will return. Is actually worth it for 6 months. She has said other areas of the country keep people on them longer but that isn't the policy here. Spoke to the G.P. Who says he thinks they might be worth a try as my immune system he thinks is in overdrive!
So advice please. Have many of you had any of the serious side effects of these drugs or the not so serious but unpleasant?
Any help would be appreciated.
Sandra
Hello everyone! I am new. I have been reading your posts for some time. And I was also suggested to post some words here and I do...
I am 23 years old, female. I have experienced many different treatements during last 8 years, creams, ointments, lamps, MTX and so on... then youngest biological treatment in Poland. Nothing helped. (Well, Humira solved all problems after 1st injection, Psoriasis score went down from around 60 to 0... however now I can only pay it in full by myself, which is not an option nowadays). After doing routine research through the Internet I found Psorinovo info. Ordered.
Now it is the topic I would like to share my experiences, as well as reading yours. I am on "small" dosis now, 2nd week - 2 pills 30mg / day... No side effects, as well as no effects (I hope - YET!)
I am pretty surprised theres almost no info about Psorinovo, its almost suspicious, well...
I purchased Psorex before, but found out it was more a scam than any help.
Posted by: Fred - Thu-25-09-2014, 15:42 PM
- Replies (5)
I have added a bar and made a Tweet offering the condolences from Psoriasis Club to the family and friends of Hollie McEwen the case that Sandra mentioned here News Today.
Well, not been on here in a while.
My life has been full of highs and lows.
After stopping with dimethylfumerate went on to Humira.
Was also no sign of improvement.
My scalp is raw at the moment.
Monday I begin with a Enbrel, MTX combination.
I'm hoping this also helps ease the pain in my hands and feet.
I'm a shoe freak and miss wearing heels from time to time.
I'm feeling quite positive about the treatment so fingers crossed
Posted by: Sandra - Thu-25-09-2014, 09:45 AM
- Replies (10)
Hi all,
Just had a text from my brother, informing of an article in The Daily Express re: Young woman who has killed herself as a direct result of the depression and anxiety related to psoriasis. How awful and tragic for both her and her family.
My brother has been questioning me about how I feel, as he says he knows how bad my psoriasis is at present. Of course I have reassured him but it did make me think.
Not once has a g.p. or a consultant ever asked me how I feel, how is my daily life affected etc..
Actually it effects my daily life, my relationships, work etc.. greatly.
For example: at work they have a Hoover handy for me as I flake everywhere. After sitting in long meetings, I get up and look at the floor and it is covered in my skin so I get the Hoover and clean it. At the end of the day, I Hoover at Head Office as the cleaners staff are unhappy, doesn't matter that they know it isn't contagious and actually I am so self conscious I would do it anyway. When I go to clients homes, I can see them focusing on my hands and have to first explain that my condition is not contagious before I can support them!
I am lucky I have supportive family and a husband who is very understanding, because we no longer go for meals out anymore because I shed so much skin, I do not go with him to work functions anymore as the last time I did people were incredibly rude and one person actually said, I would stay home if I looked like that!
I look and feel revolting, it is revolting! I am in pain! I am exhausted. I am at times made to feel like I am a hypochondriac. I have psoriasis in places that are too embarrassing to discuss and am uncomfortable most of the time.
So, I have often said my psoriasis did not develop until later in life, I do not know how I would have coped if it had started when I was young.
I am at the hospital tomorrow to see the Consultant, and I will be impressing on them their own guidlines. I will be impressing upon them, the difficulties we all face in daily life. I will not be fobbed off with U.V. And heavy duty steroids any longer. I know Doctors are only human, I know they make mistakes and I am not in anyway implying they are useless, just that after 8yrs of seeing them, it is time they took seriously the impact of psoriasis on daily life.
Fred: hope I put this thread in the right place, apologies if not.
Posted by: Fred - Tue-23-09-2014, 10:14 AM
- Replies (79)
Following on from my request to Tanlou about starting a new thread about going onto Humira, she has asked me to get the thread going for her as she's not sure how to start a new one.
So this thread will be about Tanlou's experience of using Humira for the first time, she will update it as she goes.
Nice site and I really approve of the concept. Impressive amount of available.
Interestingly (well to me anyway) I have had skin problems for over 40 years (I'm 58) and have been treated for excema all this time. Until my first (yes) visit to a consultant earlier this year who said it was psoriasis. TBH I thought I had both over the years but no GP can be bothered to think about anything beyond the myriad of creams and lotions to choose from. I only found out I had been using a steroid cream after 30 years. No-one had ever thought to mention it.
Having just read about Dovobet on your site-I can say the consultant who prescribed it for me never mentioned anything about how it is used.
Anyway, I am very fortunate that for most of this time it has been confined mainly to my feet, with my hands being affected for the last few years making me go back for lots of useless GP appointments. They all wanna 'cure' ya. Eventually they gave me the referral I asked for. Dovobet works so far.
I work for a disability charity and would be happy to contribute to the site, not likely to be on too regularly though, but keep up the good work.
Dealing with a lot of pain and tenderness in my heels for many months now. along with other joint pain. Can't hardly walk most morning and nights. Also having trouble getting my Enbrel. Considering I been on it ten years it shouldn't be hard to get it filled. Getting the run around with the specialty pharmacy our insurance switch to this year. They should of kept it the same didn't have any trouble with the one I was using for 10 years. Hope I get it soon. My psoriasis is flaring. Went dermatologist last month and I can't get into rheumatologist till sometime in February. Just frustrated and tired of hurting so much.
Posted by: Fred - Thu-18-09-2014, 18:58 PM
- Replies (1)
Following on from these threads: Merck highlites R&D of anti-interleukin-23 and Merck present MK-3222 findings at AAD
Merck and Sun Pharma today announced an exclusive worldwide licensing agreement for the therapeutic antibody candidate, tildrakizumab, (MK-3222), which is currently being evaluated in Phase 3 registration trials for the treatment of chronic plaque psoriasis.
Quote:
Under terms of the agreement, Sun Pharma will acquire worldwide rights to tildrakizumab for use in all human indications from Merck in exchange for an upfront payment of U.S. $80 million. Merck will continue all clinical development and regulatory activities, which will be funded by Sun Pharma. Upon product approval, Sun Pharma will be responsible for regulatory activities, including subsequent submissions, pharmacovigilance, post approval studies, manufacturing and commercialization of the approved product. Merck is eligible to receive undisclosed payments associated with regulatory (including product approval) and sales milestones, as well as tiered royalties ranging from mid-single digit through teen percentage rates on sales.
“Consistent with our previously announced global initiative to sharpen our commercial and R&D focus, including prioritizing our late stage pipeline candidates, we are pleased to enter into this agreement with Sun Pharma to help realize the potential of tildrakizumab for patients with chronic plaque psoriasis,” said Iain D. Dukes, Ph.D., senior vice president, Business Development and Licensing, Merck Research Laboratories.
"Sun Pharma is very pleased to enter into this collaboration with Merck, a recognized leader in the field of inflammatory/immunology therapies, for this late-stage candidate for chronic plaque psoriasis,” said Kirti Ganorkar, senior vice president, Business Development, Sun Pharma. “This collaboration is a part of our strategy towards building our pipeline of innovative dermatology products in a market with strong growth potential.”
Well lately my knee has ballooned up it's crazy just walking to the front door seems an effort (old before my time kinda feeling)
Seen the rheumatoligist today she told me I need to lose some of my chunky tummy easier said than done ( but must be done ) she also told me to join the gym if I can afford it ( well if I'm quitting chocolate I'm sure I'll manage it) anyone with the condition use the gym? Or would I be wasting my money? of what exercises/ activities do you do?
Thanks in advance. X
Hello all
I have suffered with psoriasis for 22 years now and after trying all steroid treatment, UV treatment, tar treatment and Methotrexate I have now been given Fumaderm to try. I am on the initial pack and concerned about the side effects it might cause. I have a friend who has been on it for 2 years and doesn't have any psoriasis now, and she looks fab for it, but just wanted to get other opinions.
Hi,
I just registered here. I have had psoriasis for 10 years and got psoriatic arthritis in my first year. In fact, the psoriasis hit the same month I hit menopause, and the arthritis 4 months later. I had some plaque, but mainly my psoriasis type is guttate.
I did feel that when I lost my periods, I gained this disease. It was like I had a way to release my own toxins until then.
For 4 years I tried to fight off the psoriasis with a naturopath's help. I did see some clearing, but the arthritis was awful and nearly crippling. I had it in most of my large joints, but my fingers and toes was worst.
At that point, I finally went to a teaching college where they had tested the biologics. My new derm got me on Enbrel. The following day, I did not need my naproxen pain pills. Within several weeks I noticed a huge difference in my skin. But 4 months later, the skin problems came back. Luckily, 5 years later, I am still in remission from the arthritis.
In spring of 2013, my specialists decided my skin was so bad that I should be put on methotrexate. But I also have a liver condition, so I wasn't happy about methotrexate. I visited my naturopath and she suggested I try LDN or low dose naltrexone. The other doctors were going to start the methotrexate in the fall, so I felt like I had a few months to try the LDN.
Long story short, I responded very well on LDN. I've had one PASI score of 0 and another of 6...but my skin is actually the same (just different doctors). I have pictures and will gladly share them. I have been 90% clear for more than a year. I take 4 mg naltrexone each night before bed. I had no side effects. This has been the most wonderful experience. I am still on Enbrel.
Oddly, I tried to search here for LDN, and the search feature wants 4 letter phrases or more. I then searched for naltrexone, and couldn't find that either.
I have been on the Inspire Psoriasis Foundation Forum for years, and I have learned to hate it because of advertising and being steered by the foundation with all their impersonal emails. Also, I am appalled by the people who attack folks for trying alternative therapies.
I hope I can share my good news and find a place where people aren't locked into the medical/pharmaceutical field's dictates. As we all know, there is no therapy that works for all of us and we have to advocate for ourselves and be willing to try different paths.
Personally, I believe we all share symptoms, not always the same cause. But I believe that the liver and proper digestion/absorption is the key to healthy skin.
Hey all I'm a newbie to this forum recommended to me just a quick intro
I'm a sufferer of psoriasis and have been for 14 years it's started getting worse was just plaque but now the dermo believe guttate has now started up woop like I did have enough
I'm also a sufferer of psoriatic arthritis and ive suffered with that for around 5 year. Psoriasis doesn't like creams and I've had zero success with anything I've had radiation in my knee for the arthritis (yttrium injection) sadly I'm still suffering after having it twice thanks for reading. Hope to speak to you all soon
Lucky xx
Posted by: Kat - Mon-15-09-2014, 16:34 PM
- Replies (15)
I had never heard of TSW until recently when I accidently stumbled upon a site. Steroids is something that I have always been cautious about when prescribed, but have had them by shots, orally, as an inhaler and in creams and oils so I found the information on topical steroid withdrawal informative.
I'm not putting links or info here as anyone interested can do a search but wanted to share the info for anyone using steroid creams and/or oils such as myself that had never heard of TSW.
Posted by: Fred - Fri-12-09-2014, 10:48 AM
- Replies (11)
This novel study of 104 psoriasis patients asked them to complete a postcard entitled ‘Dear Psoriasis…’ – to collect survey data on their personal models of psoriasis. It suggests patient support and psychological treatment should be made available as part of routine care.
Quote:Background:
People with psoriasis report high levels of undermanaged distress. This is compounded by the problem that some patients find it difficult to discuss their emotions. Distress prevents optimal self-management, which may exacerbate psoriasis flares, thereby creating a vicious cycle.
Objectives:
To offer people with psoriasis a novel way of expressing their personal models of psoriasis in order to gain a better understanding of their experiences of living with the condition.
Methods:
We used a qualitative technique – asking people with psoriasis to complete a postcard entitled ‘Dear Psoriasis…’ – to collect survey data on their personal models of psoriasis.
Results:
One hundred and four returned postcards provided new insights into the extent of and reasons for distress in psoriasis. Seven dominant themes emerged: identity and relationships; battleground; control; emotional consequences; hypervigilance; coping; treatment burden.
Conclusions:
Reports of distress were common, and for many it was long-standing. Some reported low self-esteem and self-denigration bordering on self-loathing, and described being hypervigilant and in a constant battle with their skin. Many people did not expect to have intimate relationships, resulting in reduced social support for patients in the future. This research underscores the need for patient support and psychological treatment to be made available as part of routine care.
Posted by: Fred - Wed-10-09-2014, 20:35 PM
- No Replies
An interesting article that looks in to inner ear damage with psoriatic patients (PsA), the study demonstrates strong evidence for inner ear damage.
Quote:Objective:
Although psoriatic arthritis (PsA) is a common chronic inflammatory rheumatic disease, little is known about audiovestibular impairment in this condition. We aimed to establish whether audiovestibular manifestations were present in patients with PsA.
Methods:
A set of 60 consecutive patients who fulfilled the Moll and Wright criteria for PsA and 60 matched controls were studied. During the period of recruitment, individuals were excluded who had a history of cardiovascular disease, cerebrovascular complications, peripheral artery disease, renal insufficiency, syphilis, Meniere disease and other vestibular syndromes, infections involving the inner ear, barotrauma, or were in treatment with ototoxic drugs.
Results:
Most patients with PsA were men (63%). The mean age at the time of our study was 52.9 years and the mean age at the onset of symptoms was 33 years. Thirty-six (60%) of the 60 patients showed abnormal hearing loss in the audiogram compared to only 5 (8.3%) of the 60 controls (p < 0.001). Values of audiometric tests (pure-tone average and speech reception threshold) yielded significant differences between patients and controls (p < 0.001). The audiogram disclosed a bilateral and symmetrical sensorineural hearing loss (SNHL) in PsA with predominant pattern of high frequency SNHL in patients with PsA (46.7%) compared to controls (8.3%, p < 0.001). Patients with PsA exhibited abnormal vestibular tests more commonly than controls. A significantly increased frequency of abnormal computerized dynamic posturography with a predominant vestibular loss pattern was also observed in patients (23.3%) compared to controls (0%, p < 0.001).
Conclusion:
Our current study demonstrates strong evidence for inner ear damage in patients with PsA.
Just wanted to say hello...I am still awaiting my official diagnosis after a biopsy...but sadly will most likely to join the psoriasis club.
My story...
About two months ago I developed a ring-like lesion on my bikini line...I was taking swim lessons with my youngest son and figured I probably picked up ringworm at the pool (I have had it before so I thought I knew what it was for sure!)...so I applied some OTC antifungal cream...to no avail
Kept spreading for 2 weeks so I called my derm and she ordered the hardcore rx type anti fungal cream for me...which I dutifully applied twice daily. 2 weeks later STILL no change and STILL spreading and getting very inflamed and basically growing together into one big rash (sigh).
Went into the derms office for her to look at and she did the whole, suck in her breath through her teeth when she saw it...(you know it's bad when they do that!) but she also was pretty sure it was ringworm so she said to either just keep applying the cream and would take time to go away or take the oral anti-fungal (which my husband and I joking called the death pill because of it's side effects)...I decided I had it with the whole thing and was going to take the oral meds. 3 weeks of it and it was still there!!
Derm said there is no way it could be ringworm if the meds had no effect at all...and by this time it's still spreading (bum crack, hands, wrists...typical!) and she thinks it's most likely psoriasis. She took a biopsy to confirm...still awaiting results. Sad face.
That's my story! The derm gave me a steroid cream to use to see if it helps at all. Its just so strange to get a skin condition in the middle of ones life (im 35)...I have never even had the slightest bit of dry skin ever...never use lotion, nothing! At least my husband is understanding...he has extremely bad eczema...so we are going to make quite the pair!
I love any suggestions from anyone else suffering from it in the same location...especially women! Thanks for listening!!
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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.