Hello Guest, Welcome To The Psoriasis Club Forum. We are a self funded friendly group of people who understand.
Never be alone with psoriasis, come and join us. (Members see a lot more than you) LoginRegister
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 - Mon-01-10-2012, 11:47 AM
- Replies (1)
Non-invasive mapping of the network of tiny blood vessels beneath the skin is now possible thanks to an advanced optics system and near-infrared imaging. The new technique could one day be used to quickly and efficiently reveal the latent signs of skin disorders, such as psoriasis or even skin cancer.
Teams based at the Medical University Vienna in Austria and the Ludwig-Maximilians University in Munich, Germany worked together on optical coherence tomography (OCT), which they say allows them to get under a patient's skin. "The condition of the vascular network carries important information on tissue health and its nutrition," explains team leader Rainer Leitgeb. "Currently, the value of this information is not utilized to its full extent." Of course, ophthalmologists have been using OCT since the 1990s to image different parts of the eye but it is only that the technology is finding application in dermatology.
The MUW team have now used OCT to look at the network of blood vessels in human skin that feeds cancerous skin lesions. They used a laser source developed by their collaborators at LMU to optimise the imaging. Importantly, the laser allowed them to obtain unprecedented high-speed images in the near-infrared which allowed for better penetration of the skin tissue overlying the blood vessels. The researchers tested the approach on various skin conditions, as well as imaging a healthy human palm. They looked at allergy-induced eczema on the forearm, dermatitis on the forehead, and two cases of basal cell carcinoma, which is the most common form of skin cancer. The OCT revealed very different patterns of blood vessels supplying the areas of skin with lesions compared to healthy skin.
The researchers explain that in the basal cell carcinoma study they see a dense network of unorganized blood vessels, with many larger vessels closer to the skin surface than normal. They can also see that the larger vessels branch into secondary vessels supplying tumour cells which are fast growing and have high oxygen and nutritional demands. Taken together with independent information about blood flow rates and tissue structure, it should be possible to use near-infrared OCT to obtain important insights into the metabolic demands of tumours during different growth stages. This would not only allow medical research to progress in this area but also provide oncologists with an additional means to "stage" a skin cancer and so offer appropriate and hopefully more effective treatment in a timely manner for their patients.
While the technique could have many uses in dermatology, the team suggests that it will likely have the widest use in the diagnosis and treatment of skin cancer. "We hope that improved in-depth diagnosis of tissue alterations due to disease might help to reduce the number of biopsies by providing better guidance," explains Leitgeb.
Of course, before it can become a valid clinical test, it will require fully controlled trials on many more patients to demonstrate efficacy. Nevertheless, OCT has many advantages over other imaging techniques primarily in that is non-invasive but it can also produce high-resolution images as well as doing that quickly. "High speed is of paramount importance in order to image lesions in vivo and in situ while minimizing the effect of involuntary patient motion," explains team member Cedric Blatter of MUW. An extra advantage is that the device shapes the light to form a Bessel beam, which is unhindered even if the beam is partially blocked as it is by the skin. It is therefore possible to ensure focus is maintained even to a depth of 1 millimetre, the team says.
Posted by: Fred - Fri-28-09-2012, 15:53 PM
- No Replies
Stiefel, a GSK (NYSE:GSK) company, today announced that the US Food and Drug Administration has approved a supplemental New Drug Application (sNDA) for Sorilux (calcipotriene) Foam, 0.005%. The sNDA expands the indication for Sorilux Foam to include the topical treatment of plaque psoriasis of the scalp in patients aged 18 years and older. It is not known if the product is safe and effective in people under 18 years old.
“Studies have shown that in at least 50 percent of psoriasis cases, the scalp is involved,” said Susan Learned, PharmD, MD, PhD, Medicines Development Leader, Dermatology Research and Development, Stiefel. “We believe this additional indication for Sorilux Foam will help meet the needs of both patients and physicians.”
The approval of Sorilux Foam for treatment of plaque psoriasis of the scalp was based on a multi-center, randomized, double-blind, vehicle-controlled pivotal Phase 3b study of patients with moderate scalp and body psoriasis. The most common side effects of Sorilux Foam were redness and pain of the treated skin areas. The incidence of these adverse reactions was similar between the body and scalp. It is for use on the skin only. It is not for facial, oral, ophthalmic, or intravaginal use.
Safety Information:
Patients should not use Sorilux Foam if they have been told by their doctor that they have a high level of calcium in their blood (hypercalcemia). The medicine in Sorilux Foam has been shown to cause hypercalcemia. If hypercalcemia occurs, patients are advised to stop using Sorilux Foam until calcium levels return to normal.
Sorilux Foam is flammable. Patients should avoid fire, flame, or smoking during and right after applying Sorilux Foam to the skin.
Patients should avoid excessive exposure of the treated skin to natural or artificial sunlight (including tanning booths and sun lamps). Patients are advised to wear a hat and clothes that cover the treated areas of the skin if they have to be in sunlight.
Patients should tell their doctor if they are breastfeeding. It is not known if Sorilux Foam passes into breast milk. Patients are advised not to apply Sorilux Foam to the chest area if they are breastfeeding a baby. This will help prevent the baby from accidently getting Sorilux Foam into his/her mouth.
Patients should tell their doctor if they are getting light therapy for their psoriasis.
Patients should tell their doctor if they have any other medical conditions.
I am currently covered from my head downwards with dry scaly patches that only psoriasis sufferers would recognise. Got asked yesterday if i had scabies!! made me want to run home and hide under my duvet. So many ignorant people out there but my self esteem is lost. Ive forgotten who i am all i think about is my skin. Its so hard as im itchy all the time my GP has been changed recently and my new one hasnt got a clue. She prescribed me a anti-histamine ffs. I feel like pretending to be a muslim and wearing a burkha. I have got so depressed and know i need help but have no one to talk to. If anyone has any advice i would take it gladly because im even crying while writing this. It will just be nice to talk to someone who is going through the same thing
Hi i am new to this forum. Am currently having a really bad flare up of psoriasis which is really getting me down. Am with a new partner who has not seen a flare up before so doesnt know how to console me. I just need to talk to people who understand what its like. I am currently covered from head to toe and the more i stress about it the worse its getting. have had pleanty of sleepless nights having been too itchy to sleep any advice would be very much welcome as i am my wits end and definately on the verge of depression.
thanks
charlene
Posted by: Fred - Wed-26-09-2012, 10:46 AM
- No Replies
OBJECTIVES:
The age of psoriasis onset has an important impact on the clinical expression and heritability of psoriasis. Psoriasis characteristics according to the age at disease onset have been extensively studied. However, the impact of the age of psoriasis onset on psoriatic arthritis (PsA) features has not been analysed in depth. The aim of the present paper is to analyse whether the age of psoriasis onset may have an impact on the clinical and genetic characteristics in a cohort of PsA patients.
METHODS:
The study included 110 PsA patients classified in accordance with the CASPAR criteria. Patients were divided into early (onset age <30 years) and late (onset age >30 years) onset psoriasis, and clinical features were studied in accordance to this stratification. Distribution of several genes within the MHC region were analysed in accordance with the prior stratification, and their frequencies compared to that of 110 healthy matched blood donors.
RESULTS:
Compared to patients with late-onset disease, PsA patients with early-onset psoriasis showed more frequently: a longer psoriasis-arthritis latency period (9.9±6 years vs. 3.8±4 years, p=0.0001), a positive family history of disease (60.3% vs. 20.5%, OR 6.1, 95% CI: 2.5-15.0, p=0.0001), severe psoriasis (PASI 8.2±4 vs. 3.6±2.2, p=0.0001), clinical enthesitis (37.7% vs. 22.4%, OR 2.09, 95% CI: 0.9-4.9, p=0.08), and oligoarthritis (47.5% vs. 28.6%, OR 2.26, 95% CI: 1.02-5.02, p=0.04). MICA-A9 was associated with susceptibility in both early-onset (60.7% vs. 30%, p=0.0002) and late-onset patients (59.2% vs. 30%, p=0.0008). However, HLA-Cw*0602 was significantly increased in patients with early-onset psoriasis (73.8% vs. 17%, p<0.0001), whereas the allele 384 of the microsatellite C1_4_4, located 34 kb telomeric to HLA-C locus, was increased only in late-onset cases (49% vs. 21%, p=0.001).
CONCLUSIONS:
Clinical and genetic features of PsA may differ depending on the age at psoriasis onset. This type of stratification should be considered in future genetic and epidemiological studies of PsA.
Posted by: Fred - Mon-24-09-2012, 14:25 PM
- No Replies
Janssen Biotech, Inc. announced today the submission of a Biologics License Application (BLA) to the U.S. Food and Drug Administration (FDA) requesting approval of an investigational intravenous formulation of the anti-tumor necrosis factor (TNF)-alpha SIMPONI® (golimumab) for the treatment of adults with moderately to severely active rheumatoid arthritis (RA).
“We are pleased to present the FDA with an application supporting the efficacy and safety of an intravenous formulation of SIMPONI seeking its approval for the treatment of moderately to severely active rheumatoid arthritis,” said Jerome A. Boscia, M.D., Vice President, Head of Immunology Development, Janssen Research & Development, LLC. “Upon approval, an intravenous formulation of SIMPONI would offer rheumatologists and people affected by this chronic, immune-mediated inflammatory disease an important new treatment option, in addition to the currently available subcutaneous formulation of SIMPONI.”
The BLA is supported by findings from the Phase 3 Multicenter, Randomized, Double-blind, Placebo-controlled Trial of Golimumab, an Anti-TNF-alpha Monoclonal Antibody, Administered Intravenously, in Subjects with Active Rheumatoid Arthritis Despite Methotrexate Therapy (GO-FURTHER) trial, which evaluated the safety and efficacy of intravenously administered SIMPONI, in combination with methotrexate, via a 30-minute infusion at weeks 0, 4 and then every eight weeks compared with placebo in 592 adults. Study participants had been diagnosed with active RA, defined as having at least six tender and six swollen joints, and had been receiving background methotrexate for at least three months.
The primary endpoint of GO-FURTHER is the proportion of patients demonstrating 20 percent improvement in arthritis signs and symptoms (ACR 20) at week 14. Secondary endpoints include a 50 percent improvement in arthritis signs and symptoms (ACR50) at week 24, improvements in disease activity and physical function, as measured by the European League Against Rheumatism (EULAR)/Disease Activity Score (DAS) 28-C-reactive protein (CRP) and Health Assessment Questionnaire (HAQ), and inhibition of structural damage, as measured by X-ray.
Week 24 signs and symptoms, physical function and safety results from the Janssen R&D-sponsored study were presented at the 2012 EULAR Annual Congress and the study appeared in the June 2012 Annals of the Rheumatic Diseases.
Long-term data, including signs and symptoms, structural damage and safety analyses, will be submitted for presentation at a medical congress in the future.
An application requesting approval of an intravenous formulation of SIMPONI for the treatment of moderately to severely active RA is currently under review in the European Union (EU).
Source: janssenbiotech.com
Simponi is currently taken by injection under the skin once a month to treat psoriasis and psoriatic arthritis.
I just joined. It's great to meet and chat with people with the same woes.
It is good to know we are not alone!
I have a mild version of psoriasis mainly scalp and a little behind the ears. My daughter has a stronger version of the disease. We've been facing the challenges associated with psoriasis for about 3 years now.
I feel we'd be better able to succeed at winning this game when we are motivated by others who are in the same boat as us.
Posted by: Hanna - Fri-21-09-2012, 08:46 AM
- Replies (1)
I was wondering what peoples moisturiser routines where.
I often find if I use too much my skin can become very itchy, I used to do cling film wraps....cover my skin in loads of cream and then seal it with cling film, my skin would look great for a bit but then become so itchy I would scratch and cause more damage to new soft skin under the old flakes.
The other thing that worries me about over moisturising is skin is wetter than normal and I would of thought far more prone to infection?
I currently moisturise 2 or 3 times a day, first thing in the morning possible around lunch depending on the look and feel and then always after an early evening shower.
I never moisturise before bed as I think this makes me itchy and cause more damage.
I use epaderm cream mixed with savlon and have now started to add a small amount of Vaseline, I apply a thin covering which I rub in well and I try to avoid clothing till its mostly soaked in!
Do you do things differently? Just wondering if there are any good hints and tips?
New to the forum, thought i check it out. I have had psoriasis for a very long time now, no cream or other treatments are working for me at the moment, just wandering if anyone else is in the same boat. It sucks big time!! Any ideas or advice, would be great.
Hi, i joined last month but already learning so much about treatments others are using. I've decided to abandon prescription meds and went in search of natural treatments, oils and essential oils i've sofar found a great shampoo but am yet to find a good body lotion. The shampoo has altered my thinking on nat remedys. i think over the years the meds have thinned my skin and im not sure if the skin ever regains anyway i am over the moon my scalp p has gone. does anyone know of a body lotion i can try?
Posted by: Fred - Wed-19-09-2012, 11:35 AM
- Replies (1)
I found a matchbook from the 1960s for sale on an auction site. The matchbook had advertising for Tropisan an "Amazing Medical Tablet For Psoriasis" I have looked but can't find anything about Tropisan apart from they were in Chicago and I found another matchbook for sale on another auction site. I suppose they disappeared because it was the days before regulations on medication and advertising.
Here's a little introduction as I've literally just joined the website this evening. I came across Psoriasis club while browsing the web for some help/advice about Psoriasis earlier today.
The dreaded Psoriasis first appeared when I was 19 and on my year abroad from uni. A few patches first appeared on my scalp. I didn't know what it was so kept scratching it.
I'm now 35 and it has gradually got worse over the years, with patches popping up in more and more places. I've tried lots of creams/potions etc and although it has irritated me, it has never been as bad as it is now.
The patches in various areas are getting worse (as well as every single finger and toe nail). But it is my scalp which is becoming unbearable. It has just got to the stage where it is embarrassing to go and stay at a friends' house because when I dry or even just brush my hair, the amount of nasty white scale which descends to the carpet is just awful. I was drying my hair at my parents' house this weekend over my suitcase so it would all fall in there. This is not a normal way to live!
I'm hoovering every day, every time I dry/brush my hair and the itching is awful.
I have just had a rather stressful summer work-wise, so I guess it could be something to do with that. Anyway, my plan is to go to the GP now work is getting back to normal and seek an appointment with a dermatologist to change/update the creams etc that I'm on.
One thing I've heard about is Aloe Vera. A consultant was telling me how, if taken, externally and internally, it can really help. It is quite expensive though so I'm looking to see if anyone here has tried it?
So I'm glad I came across this website today when my Psoriasis is starting to get me down - people look at your patches and I don't like it!!
Posted by: Fred - Tue-18-09-2012, 19:03 PM
- Replies (3)
So you thought living with psoriasis was hard. people stare at you, the bully you, they call you names, you can't go out and show your skin for fear of being looked at, you cant even talk to your own friends and family about your problem. We have all been there, and we have all at some point thought Why Me?
Well today I was talking to someone from another website that made me think, next time I feel like that (though I'm lucky it doesn't bother me to much) I will pop over and have another look at said website. Maybe you should have a look to.
The website in question is Changing Faces and yes I know I moan about you posting links on here, but today I have exchanged links with Changing Faces and you can find them in our Links page.
Go and have a look and then come back and say "I just can't go outside with my psoriasis looking like this"
As you all know I am Dutch and keep an eye on another psoriasis forum in Holland. I am not really active over there, this forum is much more active, but on the Dutch forum another two successes can be counted up to my treatment.
Two guys, David and Bart, are reporting of their advance with dimethyfumarates. David has a very high dose, much muuuuch higher than ever possible with fumaderm, but.... It works, he is almost plaque free.
Bart is a health professional and has a much lower dose, even lower than mine, and already almost free of psoriasis. His GP (now I know ... it does not mean Great Pr..k) is very interested and wants to expand to additional psoriasis patients.
Very interesting progress...
EDIT by Fred: These posts have been split from the original thread to help keep all information about Dimethylfumarates in one place, this thread is now for the discussion of Dimethylfumarates. You can find Caroline's original very informative thread here: Dimethylfumarates and Psoriasis
Posted by: Fred - Mon-17-09-2012, 11:24 AM
- No Replies
British Journal of Dermatology:
Psoriasis is associated with considerable physical and psychological morbidity. Optimal use of psoriasis treatments can limit the physical manifestations of psoriasis and help improve quality of life, but non-adherence is common.
Smoking, obesity and excessive alcohol consumption are prevalent in this population. A systematic review of adherence to medication and recommendations for lifestyle change in psoriasis was undertaken, with a critical appraisal of the quality of selected studies. Electronic searches from inception to March 2012 (pub med, Web of Science and EMBASE) were conducted. Twenty nine studies were included, however, none examined adherence to advice about lifestyle change.
Studies using a dichotomous classification of adherence tended to report sub-optimal adherence, with 21.6% - 66.6% of patients classed as adherent. No consistent pattern of results emerged for socio-demographic, disease and lifestyle factors as determinants of adherence. However, some treatment factors were associated with adherence. Whilst mixed findings were reported for quality of life as a determinant of adherence, psychological factors (psychological distress and patient satisfaction with care / therapy) were associated with adherence.
Only tentative conclusions can be made for determinants of adherence because the methodological quality of many of the included studies limits conclusions. There is a need for improved research quality and reporting in this area and this review provides a platform from which future research within this area should progress with suggested research recommendations.
Hi there my names alan im 33 from leeds. Ive been suffering with psoriasis since the age of 3. I have just recently set up my own Psoriasis support site
Posted by: Fred - Sat-15-09-2012, 10:24 AM
- No Replies
Despite the growing body of literature linking psoriasis to poor cardiovascular outcomes, most psoriasis patients are not being regularly screened for the major CV risk factors, according to the results of a new analysis.
"Screening for high blood pressure, diabetes, hypercholesterolemia, and obesity are not performed at most outpatient visits for psoriasis," wrote clinical research fellow Amir Al-Dabagh and colleagues at the center for dermatology research at Wake Forest University, Winston-Salem, N.C.
To determine whether and to what degree CV screening is taking place during outpatient psoriasis visits in the ambulatory care setting, the investigators reviewed data from the NAMCS (National Ambulatory Medical Care Survey) from 2005 to 2009. They calculated the probability of a patient’s being screened for at least one of four CV risk factors (blood pressure, glucose, cholesterol, and body mass index). They also compared screening rates by physician specialty, patient demographics, and clinical practice characteristics.
Approximately 11.4 million psoriasis patient visits were recorded during the study period. Age was found to be the only demographic factor that was significantly associated with all CV risk screens, Mr. Al-Dabagh reported in a poster presented at the American Academy of Dermatology’s Summer Academy Meeting. "Psoriasis had a statistically significant negative association on overall screening rates for blood pressure and BMI screening, but not for glucose or cholesterol."
A comparison of screening rates among patients with and without psoriasis showed that only 41.2% of the psoriasis patients were screened for at least one of the four risk factors, compared with 66.3% of patients without psoriasis. When looking at psoriasis patients only, the researchers found that screening for each of the risk factors occurred more frequently during nondermatology vs. dermatology visits, regardless of disease severity.
Specifically, among patients with severe and nonsevere psoriasis, respectively, 100% and 89.9% of psoriasis visits to nondermatology offices included screening for at least one risk factor, compared with 28.9% and 12.3% of psoriasis visits to dermatology offices, according to the analysis. In both settings, screening rates were higher among male patients, as well as among black and non-Hispanic patients, Mr. Al-Dabagh noted.
The majority of nondermatologist visits for patients with severe and nonsevere psoriasis included screening for blood pressure (100% for severe; 87.9% for not severe) and BMI (88.3% for severe; 54.4% for not severe). By comparison, during dermatology visits, 3.8% of patients with severe disease and 2.4% of those with mild to moderate disease had blood pressure screens, and 14.8% and 8.5%, respectively, had BMI recorded. Relatively few visits in either setting included glucose or cholesterol measurement, regardless of disease severity.
In 2008, the National Psoriasis Foundation issued a clinical consensus report recommending that screening psoriasis patients for cardiovascular risk factors begin as early as 20 years of age. The recommendation was based on mounting evidence from population-based studies that found psoriasis to be a risk factor for developing atherosclerosis and myocardial infarction.
In addition to early, routine screening, psoriasis patients should be counseled to modify cholesterol levels when necessary, to take measures to control depression, to quit smoking, to moderate their alcohol intake, to eat a healthy diet, and to exercise at least three times a week, according to the consensus report.
Well Hello There =D
My name is Lauren, I'm 25, and have suffered with severe plaque psoriasis since I was 15.
It started off small - random plaques here and there on my scalp, and then the more that time went by, the more I was noticing the patches spreading to other parts of my body. By 16 I was covered from head to toe in massive plaques. My back was entirely covered, from shoulder blade to shoulder blade and all the way down to just before the small of my back, The entire top of my left arm was another giant plaque, my right elbow and up my arm was another, plaques were spotting my shinns, my face and my ears. I had tried just about every cream/ointment/foam you could think of with little to no relief.
Eventually when I was about 20 or 21 I was out on my own with my own health insurance and I found a dermatologist who said that she'd been in the field for 20+ years and I was one of most severe psoriasis cases she'd ever seen. So she put me on the MTX folic acid cocktail for a while, to no avail.
She then tells me about Enbrel. Tells me all the risks and so forth and so on (if youve ever had a consultation you know the drill) and I REALLY had to sleep on it. Ive never since birth had a good medical history (I.E - I was born with a vascular hemangeoma *benign tumor* about my left eye which is a WHOLE other adventure story, rheumatic fever, lymes disease, quarantined in the hospital for 10 days with meningitis - you name it, i've probably had it) so needless to say I was terrified assuming that with my luck, something that could potentially kill me would probably do just that.
But something snapped in my head and I decided that I was tired of wearing long sleeves and jeans in the summer time. It had, at that point been about 7 or 8 years since I had gone out in public in anything less. After talking with my family and friends I decided to go for it.
And was it ever worth it!!
within 3 months I was 80% spot free - clear beautiful skin. And what a better time to get it but the break of summer! I remember I went out and bought myself a little spaghetti strap dress and went out to the store with my then boyfriend. Once we parked, I froze and couldnt get out of the car. Terrified of getting out of the car, because i felt naked in this little dress when I hadnt worn less than long sleeves and jeans in almost a decade. I started BAWLING realizing what I was about to do. After I composed myself, I got out of the car, shaking and afraid that everyone around me still saw what my skin had previously been. I had never felt SO good in my life. It was such an amazing feeling to feel..pretty for once in my life.
Then moral of that story is I lost my job and insurance followed by losing the Enbrel. My skin stayed clear fooorrr, probably close to a year, before I started seeing anymore signs of it. I had just gotten a new boyfriend (Kurt for future reference, since im still with him haha) and been dating a few months before I started to break down again. I COULDNT have this again, this COULDNT have come at a worse time..Finally Im happy with my life. My skin has been clear, no major medical issues, and just met this AMAZING guy...who knows nothing of what this has the potential of turning into.
Long story short here - I go to the dermo and have them put me back on Enbrel. I had been taking my injections 2x a week for roughly a month and then there it was. Double Vision. Id had bouts of it many times in the past but was usually accompanied by bells palsy - it was strange but Id always ignored it, it went away on its own within a few days. Id been to the ER and the DR before and they"d done MRIs but never came up with anything. Most assumed that it was somehow connected to the vascular hemangeoma - though the mass is above the skull (making an outward appearing bump above my left eye). So I have this double vision and Kurt is concerned and wants me to see a DR and I assure him that it happens all the time and will just go away- and like a good boyfriend, he wasnt okay with that. He gave it 2 days after I told him about it (it had been going on for about 4 before I told him), and I was at work and almost fainted and could barely pick up my pocketbook, my muscles were extremely weak. I called him and he rushed me to the ER and we were there from 10am until 1am, and after 2 CT scans and 2 MRIs they came to the conclusion that quickly became the end all to my skin miracle.
.Multiple Sclerosis.
It sort of felt and still sort of does feel, like I have been dealt some of THEE crappiest health cards in the deck. I know it could be much worse, and Im certainly not looking for sympathy, but....REALLY?!? lol I mean, look at the things/diseases Ive had and still have in my life, and you wanna add THAT crap shoot on top of my crap cake?!? haha.
*side note that I still do not carry a commercial insurance plan, I am however covered by Medicaid*
So now Its been 15 months since I've been diagnosed with MS and have had to stop taking my injections. I kind of came to the conclusion that Id rather treat the MS so my odds are better for this to not disable me, than to keep taking the shots and take a different route to try to keep this under control. So needless to say my skin is...I dont want to say WORSE than it was before I very first went on enbrel. It was VERY tough having giant plaques all over my body...but they were easier to target and attempt to 'treat'. Now Ive got psoriasis in places Ive never had it before and in a different way. Instead of a few LARGE patches, I have a pant load of SMALL lesions spotting my entire body. And the itch is MUCH more intense than it has ever been.
Even ATTEMPTING to treat with creams and things of that nature are tedious, time consuming, messy, smelly, I'm exposing NOT damaged skin to the steroids and/or whatever else is in them, i'm staining clothes/sheets and its just an overall NOT great way to do it.
Unfortunately due to the medication I take for the MS the options for skin treatment are limited (the MS med I take is called gilenya and my neurologist actually told me that gilenya attacks the immune system in a similar fashion to biologics and may eventually end up helping the psoriasis though there is no scientific proof to that theory).
So after reading THAT ^ novel, what do you think? lol What would YOU do? are you or do you know someone else suffering from both psoriasis AND MS?
Sorry this was so long, its just a rare occasion that I can freely express my story/concerns/questions to people who can relate. Any input is appreciated!
-Lauren
(This post will eventually be followed with pictures/video links of part of my journey on Enbrel)
Posted by: Fred - Tue-11-09-2012, 10:34 AM
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A report in Skin & Allergy News suggests patients with psoriasis are almost nine times more likely to have enlarged tonsils, compared with patients without psoriasis, according to the results of a small study.
"Our findings suggest that hypertrophic tonsils may be associated with a pathogenic role in psoriasis," Dr. Marianna Shvartsbeyn and her coinvestigators reported in a poster presented at the American Academy of Dermatology’s Summer Academy Meeting. But it is still too soon to know the clinical implications.
In all, 32 patients with psoriasis and 14 patients with noninflammatory skin conditions (common warts, melanoma, and nonmelanoma skin diseases) were recruited. Patients who previously underwent tonsillectomy were excluded.
Tonsils were examined by one investigator, using a 5-point standardized tonsillar hypertrophy grading scale (adopted from Am. Fam. Physician 2004;69:1147-55).
Tonsils that were entirely within the tonsillar fossa received a grade of 0. Tonsils occupying less than 25% of the lateral dimension of the oropharynx, as measured between the anterior tonsillar pillars, received a grade of 1; tonsils occupying less than 50% of the lateral dimension of the oropharynx were a 2; tonsils occupying less than 75% of the lateral dimension of the oropharynx were a 3; and tonsils occupying 75 % or more of the lateral dimension of the oropharynx received a grade of 4.
Chart reviews were conducted to collect information on patient age, sex, race, social history (tobacco, alcohol, and drug use), diagnosis of skin condition, and the duration/severity of disease, noted Dr. Shvartsbeyn and her colleague of the departments of pathology and dermatology at the New York University.
Patients with psoriasis were found to have had an odds ratio of 8.77 for having enlarged tonsils (grade 2 or greater), compared with healthy controls. Tonsillar size also was significantly larger in patients with psoriasis (mean tonsil grade, 1.78), than in control patients (mean tonsil grade, 0.86); the severity of psoriasis was positively associated with tonsil size, Dr. Shvartsbeyn and her colleagues reported.
Limited clinical data have suggested that there is an association between hypertrophic tonsils and inflammatory skin disease. Small studies have shown that among patients with psoriasis, the cutaneous lesions disappeared or improved after tonsillectomy. It is suspected that there may be a genetic predisposition that makes certain patient populations more susceptible, the researchers noted.
Histopathologic studies also point to the possible link between the robust immune response that takes place in the tonsils and the changes in the skin of patients with pustulosis palmaris et plantaris (PPP).
Histologic evaluation of tonsils obtained from patients with PPP has revealed enlargement of the secondary T nodules and atrophy of the lymph follicles, with a decrease in the number of the germinal center cells and fibrosis – changes typically seen in older tonsils. This finding provides indirect evidence of the intensely advanced stage of the immune response within the tonsils.
"Our hypothesis is that in chronic tonsillar hypertrophy, bacterial species that reside in the tonsils are released into the circulation and cause stimulation of T cells. As a result of this constant chronic stimulation, an autoreactive clone may be formed. The auto-clone may produce an antibody attacking the skin and drive inflammatory response. In some individuals, this exaggerated immune response may manifest as psoriasis," the investigators wrote.
And although there is empirical evidence "that tonsillectomy improved skin lesions in patients with psoriasis and pustulosis palmaris et plantaris in small retrospective studies, further studies are needed. ... The observed association needs validation and interventional study is needed to prove causation/contribution," Dr. Shvartsbeyn noted in an interview.
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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.