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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
How long do you try treatments before deciding they are not working? My son's scalp psoriasis is suddenly quite bad, worse since starting with the extra strength tgel shampoo, but also in the same week as starting tgel had a very stressful event, and ate unusually poorly for a week so I am not sure what caused the flare up. He was diagnosed with Glutate about 6 months ago and proscribed clobetasol which worked with in 2 weeks (but it all came back and more). Now 2 weeks seems to be my marker for 'working'. Tried to switch from Clobelosol to Dovobet but saw little result in 3 weeks so stopped. We have an appointment to see the dermatologist in 4 weeks, but he is really pushing the Biologics and my son is only 13 so I think much to young for such a treatment. I would love to calm that scalp down (and the rest of his P) but don't know when to give up on a treatment and try something else.
Hi I am new to this forum. I do not have psoriasis but my 13 year old son does. I am quite active on a couple other sites and am always looking for and researching best treatments for him. I would like to treat him as holistically as possible. We use clobetosol but of course a soon as we stop his P flares up and I do not want him to spend his life on steroids not do I want to compromise his immune system more than it already is with Biologics. That said his mental health is of utmost importance so if we need to do those things we will. He does have small amounts of P all over most of his body.
Posted by: Fred - Mon-27-08-2018, 16:02 PM
- No Replies
Sienna Biopharmaceuticals remain excited about their Phase 2 studies beginning in the second half of 2019 of SNA-125 in Psoriasis.
Quote:
Sienna Biopharmaceuticals a clinical-stage medical dermatology and aesthetics company, today announced results from a first-in-human study of its investigational new chemical entity SNA-125, a JAK3/TrkA inhibitor being evaluated as a first-in-class topically administered medication to treat mild-to-moderate psoriasis.
SNA-125 was developed using Sienna’s Topical by Design™ platform, which yields new chemical entities (NCEs) designed to deliver high local drug concentration in the target tissue with minimal to no systemic exposure for patients. SNA-125 selectively inhibits Janus kinase 3 (JAK3) and tropomyosin receptor kinase A (TrkA). JAK3 inhibition blocks the signaling of key cytokines, resulting in reduced severity of certain autoimmune and inflammatory diseases such as psoriasis. TrkA is the high-affinity receptor for nerve growth factor (NGF), a known mediator of neurogenic inflammation associated with psoriasis, as well as pruritus (itch).
This exploratory Phase 1/2, double-blind, within-subject vehicle-controlled study in 15 subjects, using a psoriasis microplaque model, was designed to measure an effect on inflammatory skin infiltrate thickness, local tolerability, and histology and biomarkers with two doses of SNA-125 prototype gel applied once daily for 10 days.
In this model, SNA-125, the second NCE from Sienna’s Topical by Design™ platform, was well-tolerated and showed no safety signals. Neither dose of SNA-125 (0.2 or 2 percent) reduced the inflammatory skin infiltrate thickness from baseline (p>0.8). However, histological and biomarker analyses showed a modest, statistically significant reduction with SNA-125 0.2 percent in epidermal thickness from baseline (-17%, p<0.05), as well as modulation of certain psoriasis-relevant biomarkers and gene expression profiles.
“This exploratory study, while limited, showed a modest drug effect and good tolerability with SNA-125, and provides us with directional information to help guide the design of our Phase 2 development program,” said Frederick C. Beddingfield III, MD, PhD, President and Chief Executive Officer of Sienna Biopharmaceuticals. “Of course, we would have liked to have seen more robust impact in this early-stage model, but treatment with SNA-125 may take longer than ten treatments to reveal its full effect. In parallel with this study, we have developed a more optimal cream formulation to treat inflammatory skin disorders that is undergoing nonclinical testing, and we remain excited about our Phase 2 studies beginning in the second half of 2019. We look forward to additional data from our Topical by Design™ platform in the fourth quarter of 2018 – namely, our SNA-125 Phase 1/2 study in atopic dermatitis, as well as our SNA-120 Phase 2b study in pruritis associated with psoriasis, now that enrollment has been completed ahead of schedule.”
Posted by: Fred - Wed-22-08-2018, 21:34 PM
- Replies (3)
This could be interesting for the future. An IL-17A inhibitor as a topical or pill for treating psoriasis.
Quote:
Nuevolution announced the identity of its “Cytokine X” program being a lead discovery program targeting inhibition of Interleukin IL-17A using small molecules. Nuevolution’s small molecules may offer access to both topical (e.g. cream based) treatment as well as safe tablet-based treatment, whereas currently marketed IL-17A inhibitors are injectable and high-cost antibodies that come with potential adverse reactions from the treatment. The company also announced that it will initiate promotion for potential partnership opportunities on this exciting program targeting multiple inflammatory diseases.
IL-17A is the founding signalling cytokine produced from TH17 cells of the immune system. This cytokine is responsible for driving multiple inflammatory diseases such as psoriasis, psoriatic arthritis, ankylosing spondylitis and is considered a major contributing factor in diseases such as inflammatory bowel disease and multiple sclerosis. The IL-17A target has presented itself as a very challenging protein to inhibit (block) with small molecules, and presently all available inhibitors are therefore based on injectable antibodies.
Through application of Nuevolution’s Chemetics® platform, trillions of molecules were screened against IL-17A. This was followed by application of Nuevolution’s powerful drug discovery optimization platform leading to identification of very potent small molecule lead compounds that directly and selectively bind the human IL-17A protein and potently block IL-17A cell signaling to human keratinocytes (skin cells). In order to validate the mechanism of action and benchmark our IL-17A blockers, we recently demonstrated that one of our small molecule lead compounds was as effective as an IL-17A neutralizing antibody in a collagen-induced arthritis (CIA) in vivo mouse model.
In our program, X-Ray crystallography (three-dimensional structures) from multiple chemical series have shown compounds bound to the IL-17A target illustrating distinct mechanisms of IL-17A binding of each chemotype. This supports our lead optimization efforts further towards the potential identification of a program candidate. Our data also supports that a small molecule directly targeting IL-17A, may achieve the same efficacy in clinical scoring as a therapeutic antibody directed against IL-17A.
Our current optimization efforts focus on finalizing data for initially a potential topical use of our IL-17A blockers as well as seeking a potential next generation systemic (tablet-based) formulation with the ambition of achieving a first-in-class small molecule candidate for both topical and systemic treatment options.
The development of an innovative topical as well as tablet-based small molecule program, targeting the IL-17 pathway, would be of very high value especially in diseases like psoriasis, psoriatic arthritis as well as other inflammatory diseases. Global Data is forecasting global sales in each of these indications reaching about USD 13 billion in 2024 and 2025 respectively, which underlines the interest and need for innovative treatment options in inflammatory diseases.
“Important and disease relevant protein-protein interfaces, like the one we target here in our IL-17A program, are notoriously difficult to inhibit with small molecules. We are very enthusiastic about this unique program and believe it has a strong potential to deliver a potential first-in-class small molecule drug for topical and tablet-based use directly targeting IL-17A”, said Thomas Franch, CSO.
33 year old male, have had psoriasis for the last 15+ years, just a patch on each elbow and calf, until this year, when i got my first flare....my legs are currently covered, my arms are very sore, getting patches on my scalp and my back and my torso.
Currently healing a broken toe, and have to have a TB test, and once this is out of the way i'll be starting Stelara.
Looking forward to really getting this under control.
Hello,
I’ve been on Taltz for a year and a half........no psoriasis! This is great except in the last 5 weeks I have developed a sore throat, sore ear, coughing, stuffed up and spitting up phleghm. I feel great except this is annoying. Just wondering if anyone if anyone else has had this happen. I’ve had strep tests and blood tests and everything came back negative. Help, I need reassurance! Thanks so much
Just went to my dermatologist yesterday and have been using Cosentyx since May 7th....she told the nurse that my psoriasis is at 0% coverage.....and it's true! She gave my scalp a thorough check (that's my most stubborn place for psoriasis) and checked me all over and I'm clear. So happy! THEN she said something I didn't think I would ever hear, "If you are still clear at your next 6 month appointment, I will only need to see you once a year." What?! Only once a year?! I couldn't believe what I was hearing. She also recommended that I talk with my rheumatologist to see about cutting back on methotrexate - psoriatic arthritis has been a little slower to respond to Cosentyx than my skin. Can you believe that though? 0% coverage on my skin. I am so happy with my results. Slight stomach issues have not been too bad and have been the only side effect I've experienced. Definitely manageable. I want this to encourage others. Stick with it, there is a treatment out there that will help. It might not be Cosentyx, but keep working with your doctors and experimenting with your diet (I've read that really has helped some people - I didn't find any difference when I cut out certain foods for months, but everyone is different). What doesn't work for one - may work for another. Now, if I could just find a way to stay asleep all night....hmmmm. I know I'm going to have to get some caffeine this afternoon around 2 or 3pm just to help me stay awake.
Hi! My name is Haley, I’m 20 years old. I’ve suffered from “dry skin” all my life. When I was younger they said it was eczema. Doctors always said I would grow out of it. I think I was about 13 when they started calling it psoriasis. My psoriasis covers more than 90% of my body. Its definitely gotten worse with age. Ive used topical steroids religiously for most of my life. I have a bunch of other medical stuff going on as well. I have seen a million and one specialists, no one could ever really help me. A few of my specialists tried getting me in to National Institute of Heath and after 3 long years I was finally accepted and had my first visit in February of 2017. I thought that was going to by big break. Finally get a cure and be able to live a normal life. Well, turns out the NIH is stumped too. Patiently waiting, still.
As far as my psoriasis goes we tried Stelara first. I stayed on that a few months, showed no signs of improvement. Then, they put me on Humaira. I’m currently still on the Humaira (40/0.8 ml biweekly). No improvement as far as skin goes but hair (alopecia) and nails have somewhat gotten better. Now I just started Acitreten (7-30-18). I hear a lot of negative things about the drug, but hopefully it will help.
I am on my fourth week of methotrexate treatment. 10 mg on Wednesdays and 10 mg folic acid on Fridays.
First, to this date no side effects.
During the first two weeks the itching was as severe as ever, however I experience longer intervals with calmer skin.
The Tuesday, at the end of the second week was a nightmare. I had severe itching the whole night.
The third week: Wonderful - Since that Wednesday afternoon and for the following the itching is not so severe and at intervals none at all.
Since this Wednesday 8 August I must say that the itching is much less with longer calmer periods.
I am still using anti-histamine tablets in relation to the methotrexate treatment.
I was scared to go on the medication due to all the scary information gleamed from the internet. However, with the moral assistance of my dermatologist, the liver and kidney scans and the blood test, I am glad that I am using this treatment.
I know I must be patient and is positive to see good results after eight weeks.
Posted by: Fred - Sat-11-08-2018, 15:32 PM
- No Replies
This study looked at the relationship of galectin‐3 in psoriasis patients.
Quote:Background:
Psoriasis has been shown to increase cardiovascular risk, and a contributor to this might be enhanced myocardial fibrosis promoted by the disease‐associated proinflammatory milieu.
Objective:
We sought to investigate the relationship of galectin‐3 (Gal‐3) – a recognized mediator of fibrosis with inflammatory activation and left ventricular (LV) systolic and diastolic function in patients with psoriasis.
Methods:
We enrolled 102 psoriatic patients (mean age: 52.5±12.6 years). Sixty‐five age‐ and sex‐matched healthy subjects served as controls. Echocardiographic assessment of myocardial function included estimation of LV longitudinal systolic deformation (GLS), and diastolic indices: tissue e’ velocity and E/e’ ratio. Laboratory measurements encompassed blood Gal‐3, creatinine, glucose, insulin, CRP and erythrocyte sedimentation rate (ESR).
Results:
Patients with psoriasis were characterised by elevated Gal‐3 (12.3 [9.3‐13.4] vs. 6.3 [5.5‐9.4] ng/ml in healthy controls, P <0.001), ESR (17.0 [11.0‐29.0] vs. 8.5 [6.0‐13.0] mm respectively, P <0.001) and CRP (3.1 [1.7‐10.6] vs. 1.9 [1.5‐4.0] mg/l respectively, P <0.001), and reduced GLS (19.9±3.7 vs. 22.0±3.0% respectively, P <0.001). Progressive deterioration of GLS was demonstrated across Gal‐3 tertiles. Significant associations between GLS and age (beta=‐0.21, P <0.04), Gal‐3 (beta=‐0.27, P <0.01), CRP (beta=‐0.22, P <0.03), ESR (beta=‐0.25, P <0.01), waist circumference (beta=‐0.22, P <0.03) and waist‐to‐hip ratio (beta=‐0.20, P <0.05) were found. Stepwise multiple regression analysis revealed that the independent determinants of GLS in psoriatic patients were Gal‐3 (beta=‐0.24, P <0.01) and ESR (beta=‐0.21, P <0.03). Regression‐based mediation analysis demonstrated that the relationship between ESR and GLS was partially mediated by Gal‐3.
Conclusions:
Subclinical left ventricular systolic dysfunction in psoriasis, as evidenced by reduced GLS, is linked with the inflammatory up‐regulation, and enhanced pro‐fibrotic activity (as reflected by elevated serum Gal‐3) may be involved in this process. These putative mechanisms may be responsible for the observed higher incidence of heart failure in this disease condition and should be considered as a potential target for preventive and therapeutic measures.
Posted by: Fred - Fri-10-08-2018, 11:43 AM
- No Replies
NICE The National Institute for Health and Care Excellence for the UK has approved Taltz (Ixekizumab) for the treatment of psoriatic arthritis.
Quote:
Ixekizumab alone, or with methotrexate, is recommended as an option for treating active psoriatic arthritis in adults, only if:
it is used as described in NICE's technology appraisal guidance on etanercept, infliximab and adalimumab for the treatment of psoriatic arthritis or the person has had a tumour necrosis factor (TNF)-alpha inhibitor but their disease has not responded within the first 12 weeks or has stopped responding after the first 12 weeks or TNF-alpha inhibitors are contraindicated but would otherwise be considered (as described in NICE's technology appraisal guidance on etanercept, infliximab and adalimumab for the treatment of psoriatic arthritis).
Ixekizumab is only recommended if the company provides it according to the commercial arrangement.
Assess the response to ixekizumab after 16 weeks of treatment. Only continue treatment if there is clear evidence of response, defined as an improvement in at least 2 of the 4 Psoriatic Arthritis Response Criteria (PsARC), 1 of which must be joint tenderness or swelling score, with no worsening in any of the 4 criteria. People whose disease has a Psoriasis Area and Severity Index (PASI) 75 response but whose PsARC response does not justify continuing treatment should be assessed by a dermatologist, to determine whether continuing treatment is appropriate based on skin response as described in NICE's technology appraisal guidance on etanercept, infliximab and adalimumab for the treatment of psoriatic arthritis, recommendation.
When using the PsARC, healthcare professionals should take into account any physical, sensory or learning disabilities or communication difficulties that could affect a person's responses to components of the PsARC and make any adjustments they consider appropriate.
When using the PASI, healthcare professionals should take into account skin colour and how this could affect the PASI score, and make the clinical adjustments they consider appropriate.
These recommendations are not intended to affect treatment with ixekizumab that was started in the NHS before this guidance was published. People having treatment outside these recommendations may continue without change to the funding arrangements in place for them before this guidance was published, until they and their NHS clinician consider it appropriate to stop.
hi all 36 year old Australian here. Just discovered enstillar foam for quite severe psoriasis and it works kind of. Still feel itchy parts on my body. Just seen my derm and they’ve issued me with acetretin. I’ve just stared on 25mg and here’s goes!! Hopefully this gets rid of it completely
!!!
Posted by: odin - Sun-29-07-2018, 07:28 AM
- Replies (7)
How do I treat, get rid or take care of my skin disease that I don't know? I think it's cracked skin.
I have a cracked skin and some part of it are like I couldn't explain it properly but it's like the skin was peeled off or scraped off, it's like the skin cover is gone, which is located between my two eyes and upper on the nose, what should I do? How do I get rid/heal/cure or treat it? I'm currently using cetaphil gentle cleanser and nivia soft moisturizer
This is what it looks like before using the products
"Image has been removed by the owner."
Some of my skin is gone, i don't know what it's called. It's like the upper cover/layer of my skin that was scraped/peeled off
Ok. So, I had my first 300mg loading dose of Coxentyx (DAY 0) on Monday. It's now Thursday (DAY 3). Since I weaned myself off prednisone for an MRI a few weeks ago, I have been debilitated by PsA, Ankylosing Spondylitis & a flare of my skin. (I was on prednisone because Humira stopped working, dead in the water, at 6 months because I developed antibodies, same story for Stelara after 18 successful months.)
Since coming off the 'roids, I've been taking between 1200 - 2400mg of ibuprofen a day (sometimes more) and Ativan to sleep at night, just to exist. My PsA is like a pinball, changing locations over the months... but it affects the ligaments/tendons in my feet, ankles and palms, and the joints of my toes, my wrists, one thumb, one index finger, my shoulders, spine, hips, knees.... I mean, suffice to say, every kind of movement brings a symphony of pain.
In the last 2 weeks, my rather controlled (but still existent) psoriasis has been in rebound horror mode. Super flare. I have had psoriasis since I was 18 and I'm 44 now and though I've never had a total remission, I tend to only get psoriasis in certain locations. Until now. I've got wee spots forming in entirely new places! Not cool!
Anyway, today is Thursday. It's only DAY 3 of treatment, as I mentioned. So far, I've had stomach upset, diarrhea, a bit of a headache, a low grade fever on exertion and a great deal of fatigue - oh and a bit of an injection site reaction but only at one injection site (I have to use two). I mean, I never feel great, so it's not a huge difference to feel shit, but the stomach thing and headache is unusual and the fatigue is pretty extra.
HOWEVER... in the last 24 hours, I've only taken 200mg of ibuprofen. And I'm actually walking and getting about, able to pull up my pants and such without yelping and general devastation. Still inflamed, of course, but the difference is noteworthy. I want to say that it's the drug, working already.
But, me being me, I need to play devil's advocate: as my stomach has been upset, so I've been eating very little and only super basic unprocessed stuff, gluten free, avoiding any L-argenine containing foods (brown rice, chocolate, raisins, peanuts, etc. - because they cause cold sores if you have the virus and immunosuppression can really trigger that off).
So. Here's my quandary:
Is Cosentyx helping THIS quickly?! (I had a sensationally fast reaction to Stelara, BTW, and my psoriasis was in partial remission within 2 weeks, so it's not totally unheard of) Or
Is the starvation diet of upset stomach and clean eating to thank?
Not that I mean for anyone to actually answer that. Just food for thought. I posted photos a few days ago in my intro thread. I've decided to come off Dovobet ointment for my skin at the same time as starting the cosentyx, just to see the actual results of the medication. It's my goal to be ibuprofen free ASAP because I'm also trying to get my gut health in better shape with expensive probiotics and prebiotics and it seems a shame to keep damaging my digestive (and other) organs with so much of that if it's not absolutely necessary to function.
At any rate. I was nervous and resentful about having to go onto another biologic at first, fearing the worst in terms of side effects and being generally negative and depressed about the whole thing because I'm tired of all this BS.
Hi, I'm Moxie. I've just joined, in part, to contribute and to document my oh-so-fresh Cosentyx "journey"
Background: Diagnosed at age 18 with psoriasis; age 36 for PsA;
I also have Autoimmune Metaplastic Atrophic Gastritis (AMAG) and related Pernicious Anemia (PA), as well as Iron Deficiency Anemia (IDA) of Chronic Disease (as well as from monthly blood loss on account of having autoimmune related endometriosis)
A recent test that revealed I have a heterozygous MTHFR genetic polymorphism, lending evidence to my observations that I do not absorb nutrients properly from food or supplements, which makes sense, considering that I have AMAG, which means that the stomach does not manufacture enough acid to properly break down food, among other things, such as antibodies to the parietal cells, which are vital to conversion of intrinsic factor/B12
In addition to those awesome things, I have a weird form of either IBD or Crohn's that mainly affects the jejunem (which, incidentally, cannot be gotten to by endo/colon scopes) and the presentation is atypical. Recent endoscope showed lesions on my duodenum, basically, in layman's terms: my entire digestive tract is inflamed. This is pretty typical of Psoriatic Disease, from what I understand.
I also have Hashimoto's, Ankylosing Spondylitis, and some other stuff but I'm already boring myself.
I'm Native American & European (German) from my mother's side, her parents are both first Generation of their ethnicity/region. The Native side of my family is not afflicted by the autoimmune disease, but the German side, i.e., my grandmother and my more genetically European aunt & her children, as well as one of my brothers - the one who favours the Euro-side - is absolutely plagued by it. At last count, there were 20-something separate AI disorders between 6 of us. I am the only one with Psoriatic Disease, though the others have a form of arthritis that resembles the Rheumatoid variety.
When tested, I am RF negative, typically have a high ANA titer, which is speckled and homogenous, as well as positive Anti-DS dna. I think it's fascinating that I have literal antibodies to my own DNA and consider the genetic links as well as epigenetic, psychosocial and environmental factors which have all have led up to this.
Strangely, I rarely have a very high CRP or SED rate, even though I suffer tremendously from the inflammation of my enthesis (where your tendons/ligaments attach to bones - like the achilles tendon, for instance), joints, bursa, skin and other different organ systems. When untreated with prednisone or biologic drugs, I typically run a fever all the time and feel tired and emotionally labile. It's not very fun to be inflamed and there is definitely a brain fog which accompanies all this, unsurprisingly.
I have been researching my disease for a long time and experimenting on myself through diet and observations. I would have never lived this long, had I not been triaging myself to doctors during the many crises or requesting specific bloodwork, etc. It has helped me to become extremely nerdy, impatient with doctors who are not up on the current research or open to the myriad factors affecting AI disease, and fairly isolated, as I also seem to register fairly high on the Asperger's scale.
I was untreated and reliant upon diet and lifestyle, and -of course- self-blame and denial for decades. I suffered, ignored, periodically binged on alchohol, and listened to U.S. doctors who told me I was mentally ill, drug seeking, etc. That was traumatic. Finally, 6 years ago, I immigrated to Canada and gained access to uninterrupted health care after becoming a resident. What a difference that has made. I see 7 different specialists and spent one year in a multi-modality rehab centre which focused on my arthritis, addressing every aspect of my life, methodically and with purpose. I put myself through 3 years of intensive psychological therapy with trauma specialists who used CBT and EMDR, among other approaches. Every step of the way, I think I have believed that if only I worked harder on myself, had a cleaner diet, had a clearer conscience, was more lovable or meditative or whatever, that this illness wouldn't be happening. Yet, as it's said to do, it has progressed. Despite my efforts to address my Being and so-called mortal error. My executive function has taken a real hit from all the things, that's maybe the most difficult thing of all to endure - knowing that you're simply not capable of high-level functioning, either physically, mentally or energetically. What a shit show!
In 2014, I began treatment with Stelara. It worked like a dream for about 18 months with standard side-effects. Then, poof. Nothing. Developed antibodies.
In 2017, I began treatment with Humira. It worked even better than Stelara, with fewer side-effects, except notable exhaustion. Then, again. Poof! Antibodies. I was only on the drug for about 8 months.
I take a lot of ibuprofen to resemble anything close to functional and Ativan to sleep at night because these diseases are HELL on sleep, which I simply can't tolerate anymore. I eat a (mostly) gluten free, healthy diet and use a vitamix to make smoothies. I take vitamins and probiotics (bifidobacterium longum) as well as prebiotic inulin in the form of Jerusalem Artichoke powder. I inject myself with intramuscular B12 shots regularly.
YESTERDAY, I had my first 300mg loading dose of Cosentyx. I chose the auto-injector pins. It burned slightly less than Humira, though, curiously, I had an allergic skin reaction to the bandaid/adhesive which made the area around the injection sites itch a great deal. Since I was already in an inflammatory crisis, after weaning myself off the prednisone I'd been taking for the last 6 months, off and on, it's hard to say whether I'm having any reaction to it today. I mean, I already feel like hell, LOL! It does seem to cause diarrhea, though, that would be a certainty, as I am not prone to that particular malady except under odd circumstances. Maybe a slight headache.
I took some photos today to document where I am with my skin and visibly affected joints and will try to figure out how to post them. My skin actually looks pretty great, despite the coverage, because I recently spent some time at the beach and try to take the sun every morning with my coffee, practically naked on the terrace, as sun is extremely beneficial for me... because Vitamin D is a master hormone?
Anyway, that's me. I'm Moxie. This disease has been running my life for over 2 decades. I am the mama of 2 (mostly) healthy (mostly unvaccinated - one nearly died from a series of them at 15 months and she has always shown signs of susceptibility to AI disease) teenagers, a writer and script editor, as well as a former hula hoop artist, circus arts performer and amateur yogini. I am from Louisiana originally; my kids and I relocated from Austin to Montreal, where we are definitely seen as odd ducks, in the greatest sense, of course.
I wear shorts and short sleeves now because I am beautiful, even if the Prednisone has made me fat! To hell with the nasty social/disease mentality that told me I was broken and ugly for too long!
I'm really happy to find this community where people share experiences and support each other.
I have been diagnosed with psoriasis since 2014.
The areas I have been affected the most are my scalp, toe and finger nails and legs.
After going to 3 different doctors and trying different treatments finally one of them prescribed me Cosentyx. Last Wednesday I took my first 300 mg of Cosentyx and after 5 days I’ve seen results! Of course, I’m not all clean but the thickness of the plaque has decreased. In two days I’ll go for my second doses.
One of the things that bothers me the most about this disease are my nails, I understand that it will take time to grow nails that look healthier. Can’t wait to see more results. I’ll post here my experience with the treatment and If I have any issues I’ll let you know.
Posted by: omgmoe - Thu-19-07-2018, 08:10 AM
- Replies (10)
G'day everyone!
Ive been on here for a little while however have just decided to post my first thread.
I've had arthritis since I was 18 (im 27 now). It was thought that I had rheumatoid and so I was put on Humira when I was about 20. It worked like magic for about 5 years. I forgot that I even had anything.
Unfortunately, after 5 years, it started wearing off and I also suddenly I developed psoriasis (which I think was probably due to the humira). So now my diagnosis is PSA
Just recently (5 moths ago) I've been put on Consentyx and its worked well for the psoriasis with most of it gone, however the arthritis isnt great, especially in my knees. There's fluid build up.
The doctor is thinking of changing me onto something else but the sheer thought of the psoriasis coming back is depressing -.- Stuck between a rock and hard place.
Just wondering if anyone has been on Cosentyx and whether it has taken this long for it work for PSA
Hey y'all!
Been reading the up lifting post, and y'all are very supporting! I am having a very tough time atm. (Don't mean to bring anyone down) I lost my job with insurance and having a hard time with the pain. Really don't know what to do now. It's only 40% and growing. My legs look like a burn victim and my stomach is getting there. This isn't my first time by no means, but the most painful for sure. I have never been to the ER on my own free will. Should I consider it? I hate when people treat me, like I am a lost cause.
Posted by: Fred - Sat-14-07-2018, 20:14 PM
- No Replies
It can be a big shock when you get diagnosed with psoriasis and it is a life changer. So I thought it would be a good idea to compose a list of tips from those of us that have been living with it for a while and pass on our top tips to the newly diagnosed.
*The following tips are from our members and not listed in any order of importance. We are all just people from all walks of life and have no medical training, but between us we have a vast knowledge about psoriasis, it's treatment and what it's like to live with it.
Talk: Don't keep it to yourself. Share with your friends, family, colleagues and our members here.
Read: You have Psoriasis, try to get some knowledge about your disease, it will make you a better partner for your dermatologist in order to find the best treatment for you.
Get a referral: Don't keep going to a General Practitioner (GP) who can only prescribe creams and ointments, if it's not clearing up ask for a referral to a dermatologist who has a full arsenal of treatments to help.
Tell: Tell your dermatologist all your problems not just about the skin, tell them how it affects your day to day life If you don't they will think you aren't bothered and possibly give you an inferior cheap treatment
Scams: Watch out for scams, there is no cure but you will find a lot of contradictions to that which are designed to empty your wallet and make the scammers rich.
Don't let it get you down: You don't look as bad as you think and anybody that does not like it can go and do the other !!
Appointment support: Take someone to your Dermatologist appointment. They seem to treat you a little differently and having another person allows two sides of the same point to be made. There is also the benefit of extra recall of the consultation.
Applying Topicals: Always apply any topical in the direction of how your hair lies (the grain) it helps avoid more irritation to the skin. Also apply at least half an hour after moisturising for the best absorption.
Injections: They are only under the skin and although a bit daunting at first you soon get used to them. Remove from the fridge 20 minutes before use to help stop the slight stinging sensation.
Clothing: Always wear 100% cotton clothes; ie, t-shirts, trousers, underwear etc. Avoid polyester, nylon etc because they will irritate your skin.
Under arm deodorant: Make sure that your deodorant contains no alcohol.
Moisturiser: Use raw virgin coconut oil it has natural healing properties in it too.
Instant relief: Keep a bottle of your favourite moisturiser in the fridge. The cooling really helps with the irritation.
You’re not alone: People all around have it too they might just be good at hiding it.
Anti histamine: Use a supermarket own brand non-drowsey anti histamine to help with the itching. (Always read the instructions before taking)
Frozen peas: For a quick relief from the dreaded itch try a bag of frozen peas, hold it on the itchy zone for a couple of minutes.
Thank you to those members that contributed, I'm sure your input will help those newly diagnosed with psoriasis
I will close this thread and make it sticky so it's easy to find. If you are a member of Psoriasis Club and have a tip you think would help please post in this thread: [Group Specific]
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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.