Well that was the biggest f-ing waste of my time ever!
I'm feeling very down now and totally frustrated and angry :-(

Just seen a derm and what a joke, I seriously wonder where GPs keep their brain cells!

When I saw my GP and explained my cases history of light therapy methotrexate and cyclosporine and told him now pregnant and skin worse and with short time to go would like to see derm in the hope of getting an action plan together I very wrongly assumed I would of seen someone who could help!

So my derm appointment wasn't at the hospital, this didn't phase me to much as have been seen at a GPs before then had to go to hospital the following few days, this is how it went.....

Hi I have psoriasis which is very bad now and has gotten worse with my pregnancy, I'm not sure what the GP has sent you........

Derm...oh I see, umm well sometimes that can happen due to hormones, I see you stopped cyclosporine was this for pregnancy? we can certainly use some creams for you.

Me....yes I stopped that last october, I then had to go back for UVB as skin flared I finished that in feb and normally I would call the hospital direct but it was given by a different nurse and I was told to see GP if psoriasis got worse.

Derm......well when we give UVB we tend to see something called remission for some people this can last 5 years or so 

Me.....yes my remission with UVB is normally short lived

Derm......so we need to look at immune suppressants, methotrexate or cyclosporine 

Me......yes I have had both before and there has been talk of biologics being the next step for me, but I'm not so keen on that at the moment I would prefer to try the UVB again.

Derm......oh well I'm not linked with the hospital and can't arrange that for you but I can prescribe you steroids or cyclosporine.

Me......oh well I'm not sure why I am here then, I can't use steroids and I really don't want a prescription for cyclosporine with being pregnant, I asked the GP to refer I assumed it would be hospital linked!

Derm....if I'd known you were pregnant I would of advised you had gone to the hospital, would you like some creams? Are you using moisturiser?

Me....no I can't use creams, I'm also allergic to a lot of the moisturiser creams so I can only use epaderm mixed with savalon and I can only apply that a couple of times to stop my skin becoming sensitive to it!

Derm....oh well I'll send a letter to the hospital for you!!

I get up and walk out!!!!!

I'm so upset, I finally go to someone about my skin only to be passed around and not get any where other than just waste my time, and what has upset me the most is that my younger sister got a call last night to say a letter has come from the hospital for her to see a derm next month, a f-ing blind person would pay to see her psoriasis she has the smallest bits on her knees and elbows and I'm about 80% covered and causes me pain and burning....how is that fair??

I've really had enough now :-( what's the point?

What a D-head trying to give a pregnant women cyclopropane he didn't even look a me or ask if I plan on breast feeding!!!

Just wish I could drown my sorrows with some cheap wine and cigarettes :-( 

I was just browsing the web and was looking at star sign bits, not that I'm a big believer in them but I just read that being a pisces I'm more prone to liver and skin trouble!

So can star signs determin health issues?

The poll won't give me the other 2 options so if you are an Aquarius or pisces you will have to write your reply!!!

EDIT: Other two options added.

Hi my name is Liza and I have had psoriasis for 7 years now. I had tried every cream then light treatment but only got 2 days clear after light treatment so stopped everything and gave up trying to fix this as nothing worked.
I went to GP last week who prescribed me Dovobet again. I had not used anything for 3 years and my psoriasis was awful. One week later after using Dovobet I have honestly only slight pink patches of a shadows where the flaky red psoriasis had been. Actually cant believe it!!!

Thought I would come on here and say as I vowed the minute I found something that worked I would share it with other suffers.

I know I might stop this Dovobet as I'm to only use for 4 weeks and it could come back straight away but I'm keeping everything crossed it works.

My psoriasis was particularly bad on my hands and was very noticeable. I had lots on my legswhich isnt as clear as my hands yet but I could hide my legs.

Dovobet did not work for me before so I'm amazed it worked this time. I'm sure it is stronger than the one I was presciped before as I didnt have to stop the other Dovobet after 4 weeks so possibly a different strength.

If like me you have not used this strength of Dovobet speak to your GP as it has honestly made me so happy. Even if I do only get 4 weeks clear it will have been the best I have felt about my self for ages xx

Just thought I would mention this. I've had a bit of a bad belly the last few days and Mrs Fred came home with some Tonic Water and said try this it should help your stomach. Anyway my belly is fine again now, but I did a bit of research into Tonic Water because I was telling Mrs Fred that it contained Quinine.

I found out that Quinine is a natural white crystalline alkaloid having antipyretic (fever-reducing), antimalarial, analgesic (painkilling), and anti-inflammatory properties. Now I don't know if there is any thing in this but in the last couple of days I have noticed the psoriatic arthritis is a little less painful. I should point out that it wasn't to bad anyway, but anyone with PsA will know what I mean when I say you can often feel it, and you know if it's feeling better or not.

Quinine has been used to also treat Malaria, Lupus (a systemic autoimmune disease), nocturnal leg cramps, and arthritis. Obviously there are small amounts of Quinine in my Schweppes Tonic Water (Other brands are available) and I wouldn't recommend anyone try using pure Quinine

But just wanted to share this with you, and if anyone has any comments I would be interested. Oh and No I didn't mix it with Gin or Vodka

So I've Have given in and saw a GP and they have referred me to a dermatologist under emergency conditions (all that means is I get seen quicker)

My appointment is next Monday, so I'm planning on taking with me a few questions and points that I feel are important and what I hope to achieve from seeing a new dermatologist.

I thought might be a chance also for others to give input on what you think important questions or goals are for when you have an appointment




So please share

X

Hello every one. I am new to the forum group. Does anybody else break out really bad from the sun with Psoriasis? I have been told that it gets better in the summer. Why do I get worse in the sun? I have 2 family members say the heat helps there psoriasis. I have been told that it is psoriasis. But why would I break out worse. My wedding in July was outside and my arms look terrible in my pictures. thank you karen

I suffered from psoriasis for about 3 years before I was able to visit the doctor to find out what it was. He gave me a skin cream that was one of those used for minor skin irritations that has steroids in it. it did not even phase it, so for the past 4 since then I have been searching for something to use. About 5 months ago I had a really bad flare up, and my skin hurt so bad I could not sleep. I cried for three days because my skin hurt so bad and nothing would help. I gained about 70 pounds in the last 7 years since I started having this skin problem and nothing was working.

I went crying to my mom. A 30 year old does not like to say that. She looked and looked and then remembered someone in her office at work had a blue gel or blue bottle or something is what she told me that helped with his skin condition. Then she went looking at the store.

She brought home Blue star ointment and I took a really hot bath that night and got rid of as many of the scales as I could, and applied the blue star to my abdomen and my lower areas where I was hurting. Kind of an all or nothing thing. The next day my skin was still irritated mildly. The second day it didn't hurt at all. it was stil red for a few weeks after and Within two months you could only see the lines of where the psoriasis had been. Now five months later I can barely tell I have it. My psoriasis was covering 1/3 to 1/2 of my body and now i can barely tell it is there. I would have written a whole lot more about this and I will take time to answer any questions you have about my psoriasis but I am at the library and it is closing.

Bluestar can be found at wal-mart or walgreens and all you need is bluestar and to not use any lye soaps. like the oil of olay cocoabutter soaps work excellent.

I hope this helps you.

Beka

EDIT: This post has been given it's own thread, see post below.

Hi to all,

Finally, I found some people just like me, I’m so happy to be a member in your group, hope I can share my experience with you.

Do you have psoriasis and have 15 minutes per week to spare? Then why not come and join us here and help others.  Your support or information could be valuable to others.

Psoriasis Club is looking for more friendly people to come and help others. Maybe you have experience with a certain drug or natural treatment for psoriasis. You may just have a kind nature and are willing to listen to others when they are feeling down. With a bit of luck you may be a comedian and could post something to make us laugh in the Off Topic section.

It would take around 15 minutes a week to login and see what new posts or threads have been made that need an answer or support. Can't spare 15 minutes?
No problem just get Notification of new threads and posts

You may have joined us but no longer need help or support. you may have found something that works for you and your happy with the results. but please take just 15 minutes a week to login and share with others. We're all in it together

Psoriasis Club is totally self-funded and does not rely on sponsors or donations, but we do need input from others who understand what it's like to live with psoriasis. If you fit the bill please join us now and feel part of a friendly group of people.

Spammers, Trolls, or Cyberbullies need not apply.

Thank you.

Fred.

Hi all,
Wondering if anyone has any experience with Remicade? I'm currently using stelara, had really positive effects in the first couple of month's but my psoriasis doesn't seem to cope too well with the big gap inbetween injections, and after enquiring with my dermatologist, there is no scope to have injections more frequently :-( I've tried everything else apart from Remicade, so this is what is being suggested I try now. Anyone have any experiences, whether positive or negative? Thanks for reading :-)

I was wondering if anyone else was using Enbrel and what have the result been.

Hi,
Just thought I would say a quick hello to everyone, it's so good to find a forum like this, I've suffered with psoriasis for a while and it's pretty widespread, will be nice to chat to fellow sufferers :-)

Would you swallow the eggs of a pig parasite to help your psoriasis?

Coronado Biosciences Inc Massachusetts, is developing what it hopes will be the first in a new class of treatments for autoimmune conditions such as psoriasis. Each dose of the drug consists of thousands of microscopic parasite eggs, culled from pig faeces, suspended in a tablespoon of saline solution to be swallowed.

In a pig, the eggs would grow into mature whipworms and reproduce, without harming their host. In humans, the same eggs barely survive two weeks. Yet in that short period they appear to modulate a patient's immune system and prevent it from attacking the body's own tissues and organs.

"It has the potential not only to be a drug but to provide insight into the cause of these diseases," said Dr. Joel Weinstock, chief of gastroenterology and hepatology at Tufts-New England Medical Center in Boston and an adviser to Coronado.

The company is preparing to enroll 220 patients with Crohn's disease in a midstage clinical trial. Participants will receive either a dose with 7,500 eggs from a pig whipworm or a placebo once every two weeks for 12 weeks.

Coronado's partner, German drugmaker Dr. Falk Pharma GmbH, is conducting a midstage trial of the drug, known as trichuris suis ova (TSO), in Europe. The two companies plan to share data when filing for marketing approval in 2016 or 2017.

The technology behind Coronado's product was developed by Weinstock and researchers at the University of Iowa, where Weinstock was affiliated before Tufts. It is based on the "hygiene hypothesis," which holds that many developed countries have, in some ways, become too clean for their own good.

Millions of organisms, including viruses, bacteria and worms, enter the body through contact with dirt. Researchers believe many of these organisms are needed to train the body's immune system to recognize and fight disease.

Studies have shown that the incidence of autoimmune disease tends to be highest in the developed world, and is highest there among upper-income groups. Weinstock and others hypothesize that the elimination of certain intestinal parasites may have led to the loss in some individuals of a key mechanism for modulating the immune system.

"With the pig whipworm, there is no permanent infection, no real possible side effects," he said.

Sandage said about a third of patients experience some gastrointestinal discomfort, such as diarrhea or cramping, after the first or second dose, though the symptoms typically go away after a day or two.

"What we know from the pig whipworm is that when you give it to people, it is destroyed in the gut," said Fleming. "It doesn't come out, so you have to keep giving it."

Initial results from early trials of the drug in patients with multiple sclerosis are promising, he said, though much more study will be needed to prove efficacy.

Source: reuters.com

Psychological interventions such as habit reversal, relaxation and cognitive behavioural therapy have for the first time been shown to help prevent skin conditions, University of Sheffield experts have found

A team from the Department of Psychology at the University of Sheffield analysed the combined results of previous studies and determined that psychological interventions provide benefits to patients with skin conditions like psoriasis and atopic dermatitis.

Skin conditions have long been associated with psychological distress but for the first time interventions such as habit reversal, relaxation, cognitive behavioural therapy (CBT) and other psychological interventions have been found to help end suffering.

Following analysis of 22 studies involving more than 900 participants the team at the University of Sheffield concluded that there was evidence of benefits but also that there was the need to develop further specific interventions and to conduct more rigorous evaluation of these, including assessments of effects over longer follow-up periods and a wider range of skin conditions.

From their evaluation they found that psychological interventions had a medium-sized effect on skin conditions but that a number of different factors influenced the effectiveness of the interventions, including: the type of intervention, the time interval between the end of the intervention and follow-up, and the type of outcome.

The number of skin conditions represented by the study was small but a medium-sized effect was seen for interventions treating psoriasis and atopic dermatitis. The analysis showed that psychological interventions generally had less effect on skin conditions accompanied by pain.

From the studies analysed only four types of intervention were well enough represented for analysis: Habit reversal, CBT, arousal reduction and combined techniques. Habit reversal had the largest effect size, followed by CBT (medium to large) and arousal reduction and combined techniques (medium).

Although the duration of the intervention did not have a great impact on effectiveness, the length of time between the end of the intervention and the follow-up did have a significant impact with longer follow-up periods being associated with smaller effects, suggesting that there may be a need to provide booster sessions.

Group therapies appeared to be as effective as one-to-one sessions. However, the authors also drew attention to the finding that age was negatively associated with effect sizes, for example the older the person was, the less effective the psychological intervention was.

Source: shef.ac.uk

Hi All
I am so pleased I registered with the Psoriasis Club. Just reading the comments posted by fellow sufferers as eased my mind regarding my current treatment.
I have recently stopped using methotrexate after 1 year due to the effects it was having on my liver and was prescribed Fumaderm in July 2012. I am currently on 2 Blue tablets per day and the stomach cramps are already unbearable. I was contemplating stopping this treatment but my psoriasis is at an all-time high.
Is there any other treatment I could consider?
Danny

Objective: 
To assess whether patients with psoriasis treated with tumor necrosis factor (TNF) inhibitors have a decreased risk of *myocardial infarction (MI) compared with those not treated with TNF inhibitors.

Design: 
Retrospective cohort study.

Setting: 
Kaiser Permanente Southern California health plan.

Patients: 
Patients with at least 3 International Classification of Diseases, Ninth Revision, Clinical Modification, codes for psoriasis (696.1) or psoriatic arthritis (696.0) (without antecedent MI) between January 1, 2004, and November 30, 2010.

Main Outcome Measure: 
Incident MI.

Results: 
Of 8845 patients included: 1673 received a TNF inhibitor for at least 2 months (TNF inhibitor cohort), 2097 were TNF inhibitor naive and received other systemic agents or phototherapy (oral/phototherapy cohort), and 5075 were not treated with TNF inhibitors, other systemic therapies, or phototherapy (topical cohort). The median duration of follow-up was 4.3 years (interquartile range, 2.9-5.5 years), and the median duration of TNF inhibitor therapy was 685 days (interquartile range, 215-1312 days). After adjusting for MI risk factors, the TNF inhibitor cohort had a significantly lower hazard of MI compared with the topical cohort (adjusted hazard ratio, 0.50; 95% CI, 0.32-0.79). The incidence of MI in the TNF inhibitor, oral/phototherapy, and topical cohorts were 3.05, 3.85, and 6.73 per 1000 patient-years, respectively.

Conclusions: 
Use of TNF inhibitors for psoriasis was associated with a significant reduction in MI risk and incident rate compared with treatment with topical agents. Use of TNF inhibitors for psoriasis was associated with a non–statistically significant lower MI incident rate compared with treatment with oral agents/phototherapy.

Source: archderm.jamanetwork.com

*Myocardial Infarction (MI) is commonly known as a heart attack.

This has really frustrated me today and played on my mind a lot, so I just want to vent a bit.
I know deep down I should know better and not judge and I feel like a bad person!

I had a call today from someone who needed to re-home their dog which they have had the past 5 years, their reason Psoriasis!!!v

As a dog lover and owner and a sufferer of the condition it has really struck a cord with me.

I have been so bad to the point I cannot dress myself but I do and I just push on through and still I manage to walk my dog and care for him, I also know that if I am very bad there are treatments and it's only a matter of time before I can start and the meds kick in.

I feel awful for my lack of sympathy but I get so many phone calls about people needing to re-home. And if the person who called is reading this I do apologise I don't know your own situation and I really hope you find relief soon.

I used Dovonex when it first came out and omg I was in agony the itching was unbearable. Had Diprosalic, dithranol in lassars paste all strengths, methatrexate, and the only thing I used which cleared my skin within a week was Psorigan and as it was only cosmetically approved and not medically approved it was taken off the market. I wish I had bought loads of it at the time. Also had PUVA and ultra violet and at moment using a solution of coal tar and aqueous solution.

Hi all, yesterday I said I received an email from someone called billy who was a mechanic. He was in despair and was thinking of blowing his head off. he said the psoriasis was in his finger nails and toenails and sounded so distraught. I did reply to him through a yahoo email. Unfortunately I cannot find it to copy and paste for you all to see. I tried to say to him that it was harder for a female especially in this hot weather as I cannot wear shoes as the pressure hurts my toes and wearing sandals is a definate no no for me. Maybe I said the wrong thing to him and now I am a bit worried because if he is not a member here then why did I get the email. please help

A Rochester Institute of Technology NY (RIT) team is seeking to improve the diagnosis and assessment of psoriasis through the creation of a multimodal, image-based analysis system. The project seeks to improve treatment for individual patients and allow for enhanced longitudinal studies of psoriasis.

"Presently, dermatologists use a method called the Psoriasis Area Severity Index (PASI) score to analyze affected areas of the skin," notes Christye Sisson, professor of biomedical photography at RIT and leader of the project team. "However, the process can be very subjective as each dermatologist could potentially 'grade' patients differently."

The lack of empirical data can make it difficult to compare assessments made by different dermatologists or by different research groups studying the disease.

"Through the use of novel imaging technologies we are seeking to create a standardized and repeatable process that will be more accurate and allow for better assessment across populations," Sisson adds.

Sisson is working with Francisco Tausk, MD, a professor of dermatology at University of Rochester Medical Center, to create an imaging tool based on anomaly detection software which has previously been used in remote sensing applications. The tool will include multiple imaging modalities and assess the area of coverage based on the three criteria currently used by the PASI score: thickness, redness, and scale.

The team is currently testing imaging techniques, including thermal, ultra violet reflectance, and LIDAR, to identify the best method for assessing each criteria. They will then work with the University of Rochester to assess severity on current psoriasis patients and compare it to the PASI scores for each person.

Sisson and Tausk hope to ultimately create a standardized multimodal imaging system that could be implemented by dermatologists and hospitals nationwide.

"By modifying imaging technology that has already been developed we can create a repeatable, quantifiable method for diagnosing and ultimately treating patients with this disease," Sisson says.

Source: rit.edu