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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
I am not new to this site but have not introduced myself
I am 61 and have had Psoriasis since I was 17 at varying degrees of intensity
I would only use natural treatments up until about 6 years ago
when it became unbearable. I think it may have been because of menopause
but I finally found a Derma I liked who convinced me to try Stelera.
Honestly it was life changing. I still always had some areas
but I was at about 80% covered before Stelera
I have since switched to Try?? - sorry I always go blank on the name-
But it is even better. Do I worry about long term effects of these drugs?' Yes
but my quality of life is vastly improved. Anyway
I don't want to forget that I am still a psoriatic and want to be more in
touch with this wonderful community
Posted by: Fred - Sat-06-10-2018, 12:06 PM
- No Replies
Enstilar foam for psoriasis.
Active ingredients: 50 μg/g calcipotriol (as monohydrate) and 0.5 mg/g betamethasone (as dipropionate)
List of excipients: Liquid paraffin, Polyoxypropylene stearyl ether, All-rac-α-tocopherol, White soft paraffin, Butylhydroxytoluene (E321), Butane, Dimethyl ether.
Shelf life: 2 years. Use within 6 months of first use. Do not store above 30°C.
Caution: Extremely flammable aerosol.
Important information: For skin use only (topical use). Do not get Enstilar in your mouth, eyes or vagina. If you accidentally get Enstilar on the face, in the mouth or in the eyes, wash the area with water right away.
How to use: The can should be shaken for a few seconds before use. Enstilar should be applied by spraying holding the can at least 3 cm from the skin. The foam can be sprayed holding the can in any orientation except horizontally.
Enstilar should be sprayed directly onto each affected skin area and rubbed in gently. The hands should be washed after using Enstilar (unless Enstilar is used to treat the hands) to avoid accidentally spreading to other parts of the body. Application under occlusive dressings should be avoided since it increases the systemic absorption of corticosteroids. It is recommended not to take a shower or bath immediately after application of Enstilar.
Enstilar foam should be applied to the affected area once daily. The recommended treatment period is 4 weeks. The daily maximum dose of Enstilar should not exceed 15 g, i.e. one 60 g can should last for at least 4 days. 15 g corresponds to the amount administered from the can if the actuator is fully depressed for approximately one minute. A two-second application delivers approximately 0.5 g. As a guide, 0.5 g of foam should cover an area of skin roughly corresponding to the surface area of an adult hand.
If using other topical products containing calcipotriol in addition to Enstilar, the total dose of all calcipotriol containing products should not exceed 15 g per day. The total body surface area treated should not exceed 30%.
Notes:
Enstilar is contraindicated in erythrodermic and pustular psoriasis.
Enstilar is contraindicated in the following conditions if present in the treatment area: viral (e.g. herpes or varicella) lesions of the skin, fungal or bacterial skin infections, parasitic infections, skin manifestations in relation to tuberculosis, perioral dermatitis, atrophic skin, striae atrophicae, fragility of skin veins, ichthyosis, acne vulgaris, acne rosacea, rosacea, ulcers, and wounds.
Always read the enclosed leaflet and use as prescribed by your doctor.
Posted by: Fred - Sat-06-10-2018, 11:24 AM
- Replies (13)
This study suggests that brodalumab (aka Siliq and Kyntheum) is associated with a higher likelihood of sustained PASI response, including complete clearance, at week 52 than comparators.
Quote:Background:
Patients with moderate‐to‐severe psoriasis require long‐term treatment, yet few trials compare outcomes beyond a short‐term induction period. Quantitative comparisons of long‐term outcomes in patients with psoriasis are limited. To our knowledge, no network meta‐analysis (NMA) of such data has been performed.
Objective:
To compare novel systemic therapies, both biologic and non‐biologic, approved for moderate‐to‐severe psoriasis by conducting a systematic review (SR) and NMA of Psoriasis Area and Severity Index (PASI) outcomes measured at or around one year.
Methods:
An SR was conducted to identify studies reporting PASI 75, 90 and 100 responses. Feasibility of an NMA on maintenance phase endpoints was assessed and sources of heterogeneity considered. Data appropriate for analysis were modelled using a Bayesian multinomial likelihood model with probit link. Wherever possible, data corresponding to an intention‐to‐treat approach with non‐responder imputation was used.
Results:
Twenty‐four studies reporting outcomes at 40–64 weeks were identified, but heterogeneity in study design allowed synthesis of only seventeen. Four 52‐week RCTs comprised the primary analysis, which found brodalumab was significantly more efficacious than secukinumab, ustekinumab and etanercept. Secukinumab was also more efficacious than ustekinumab and both outperformed etanercept. In a secondary analysis, evidence from thirteen additional studies and four further therapies (adalimumab, apremilast, infliximab, ixekizumab) was included by comparing long‐term outcomes from active interventions to placebo outcomes extrapolated from induction. Results were consistent with the primary analysis: brodalumab was most effective, followed by ixekizumab and secukinumab, then ustekinumab, infliximab and adalimumab. Etanercept and apremilast had the lowest expected long‐term efficacy. Results were similar when studies with low prior exposure to biological therapies were excluded.
Conclusion:
Results suggest that brodalumab is associated with a higher likelihood of sustained PASI response, including complete clearance, at week 52 than comparators. Further long‐term active‐comparator RCT data is required to better assess relative efficacy across therapies.
Posted by: Fred - Thu-04-10-2018, 20:11 PM
- No Replies
Britain's National Institute for Health and Care Quality (NICE) has recommended Xeljanz (Tofacitinib) for psoriatic arthritis.
Quote:
Tofacitinib, 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 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).
Tofacitinib is only recommended if the company provides it according to the commercial arrangement.
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.
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 tofacitinib 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.
Posted by: Fred - Wed-03-10-2018, 16:01 PM
- Replies (53)
Any Enstilar users got any tips to pass on ?
France has finally approved Enstilar and I'm going to be giving it a try for the stubborn little bit of psoriasis and to use as and when I want if I feel a flare up coming.
Obviesly I will be reading the notes, but sometimes it's good to get some reviews or tips from users.
I have noticed it says you shouldn't use it under your arms or on the groin area, that is usualy where I first feel a flare up starting so what do you think ?
Have been reading on a variety of groups about Zudaifu cream, and whether or not this contains steroids. When I asked my Dermatologist he said all non-regulated creams contain steroids - it's the only way they work. I've only met my Dermatologist three times and trying to be nice, he doesn't really have a personality and one of the old-school consultants who quite possibly has a god-complex! So I'm looking for some user experience.
I'm flummoxed - listed below the ingredients for Zudaifu cream, I can't figure out which is the steroid - can someone enlighten me?
Ingredients: Sophorae Flavesgentis radix (anti-inflammatory Chinese medicinal herb), Stermonae radix (antibacterial and antifungal Chinese medicinal herb), Cnidii Fructus (Chinese medicinal herb that kills parasites), Kochiae Fructus (Chinese medicinal herb used to clear heat and remove dampness), Menthae Haplocalycis herb (Chinese medicinal herb for rashes), Extracts, Chlorhexidine acetate (skin cleanser for wounds), Stearic Acid, Distilled Monostearate, Glycerol Vineargear, Petrolatum, Purified Water.
Posted by: Marie92 - Sun-30-09-2018, 05:57 AM
- Replies (10)
Hi every one! So I am new here and I wanted to get some feedback on taltz. I just started the injections yesterday and it hurt so bad :( do these injections ever stop hurting? I mean I'll take the pain to get rid of the painful psoriasis but these shots are no joke. Thanks!
Hello,
I've been reading posts on here for maybe a couple months and am finally doing my introduction.
I was born w/psoriasis. I turned 50 yesterday. I've had psoriatic arthritis about 10 yrs but didn't realize that's what it was.
I've been trying to manage it all with diet and lifestyle, also tanning beds. However, the progression of symptoms made me realize I could no longer manage this horrible disease on my own.
Skipping ahead, my dermatologist got me samples of Cosentyx in hopes it would be approved by my insurance but they want me to try Humira first.
My first loading does of Cosentyx began on 8/24/18 and did all 5 weeks before the insurance denial. I did just 150 mg instead of 300 mg.
My psoriasis started clearing so quickly. It was amazing. It didn't do anything noticeable for the psoriatic arthritis. No noticeable side effects.
I will be starting Humira, assuming all goes as planned. I hear Humira works pretty well for psoriatic arthritis and I'm trying to ignore the negative stuff I read about it.
This forum seems amazing.
Nancy Mullendore
My sons neck has been stiff for months. Our doctor said he guaranteed it was not related to psoriatic arthritis, and the dermatologist said yesterday that psoriatic arthritis is usually in the hands so its unlikely related. Anyone here ever had issues with the neck and arthritis?
hi im yato, 13 had psoriasis since i was like 6?? it started on my scalp and gradually went down into my eyebrows but never progressed further until about 5 years later. now its all over my body (at least 50-60%) and i have no pill/shot i can take since i'm not 18 yet.
the only medicated thing i can use is one of those weak steroid creams, but those have proven ineffective as there isn't enough for me to use it on a regular basis.
has anyone ever tried regular gold bond lotion (the healing kind), for me it's pretty effective. though it doesnt make it go away super fast, it lessens the impact on my daily life + it doesn't cling to my skin like some other medicated creams.
Had a few days where we basically pretended Psoriasis was a not a thing in our lives. It was blissful but now I am crashing. The face P is the most crushing. Getting closer to going the Stelera route but he is just so young ? I been looking for info on Elidel as a doctor friend told me it could be be good. I can’t find anything on here. Has anyone here tried it?
Have had severe psoriasis for about 15 years. Started around the age of 35 or so. Tried a bunch of steroid ointments which helps minimally. I was my derms first patient for biologics many years ago. I believe it was Enbrel. Can't remember I've gone through so many. Most of them work for me for a couple of years, then start to lose their effects. Start to see positive results in a few weeks, then about 4 months for about 80-90% clearances.
After Enbrel, started Humira, then Stelara, then Cosentyx. Cosentyx worked for about 3 years until the beginning of this year. Was about to start Taltz, but my derm said I could try Humira again since Taltz doesn't work too well, from his experience. Went back on Humira for a couple of months, but didn't see any improvement this time around.
My derm suggested I try giving my body a break from the biologics. So after a few weeks of weening myself from those, and my psoriasis flaring up like crazy...worst I've ever experienced because I've always had the various drug treatments, I started on Otezla(oral pill).
Well, about 4 weeks into Otezla, I became severely allergic. I mean, rashes and bumps all over my body. The itchiest experience you can imagine. Many, many times worse than any psoriasis itchiness I've experienced.
I ended taking over 100mg of Claritin a day for 3 weeks. And of course, immediately stopped taking the Otezla. Had to rid my system of all traces, so went cold turkey without any psoriasis meds for another couple of months, so you can imagine how bad the psoriasis became.
Anyhow, started on Siliq about a month ago and the results are promising. Truth be told, other than the Humira on the 2nd round, all the injection treatments have worked pretty well. I just hope Siliq works as well as the others in clearing up my condition. And, that it continues to work for years to come or until another (or better) solution is developed.
Thanks for reading and letting me share my experience.
Doc proscribed CLobex foam for a few days on the scalp. Pharmacist (Chemist to most of you) said there isn't a foam, so I have to choose between shampoo and spray. Whats the difference? Is there one more terrible than the other, or more effective?
I registered On Friday and activated my account through email. It's not letting me access my own profile saying I don't have permission. Does it just take a while or should I be doing something?
Had an appointment with the GP today. He suggests trying a round of phototherapy before trying Stelera. A gentler treatment and if it works and the P doesn’t come back- awesome! If it does come back, nothing lost and THEN we try Stelera. Makes good sense I think. What are your experiences with phototherapy?
Hi. So great to hear about this group and to read the various threads-they are of great comfort to me and are also so informative. Thank you.
My daughter (18) has extensive guttate P on her body, legs and arms and plaque P on her scalp.
She has been on treatment for the last 18 months with no change at all to her P-in fact it has become worse.
She is on the maximum dosage of methotrexate that our doctor is comfortable with and also has topical creams- dovobet,diprosalic, various tar products, clobex shampoo(which gives her painful hairline acne if used for too long. ) I am probably forgetting a host of other potions and lotions.
The reason I am posting is that I feel that this way of treatment has gone on too long and it's time for a change. Our dermatologist agreed and has given us various options: acitretin, cylocsporin, phototherapy or one of the Biologics. He is getting back to me on more information about each drug.
Any advice? I have read some of the threads on Stelera and it seems very positive.
My question I guess is:-what would the recommendation be from anyone who has walked this road before?
I find it really hard making a decision for my child when all of the drugs have such serious side effects.
I look forward to any thoughts or suggestions. Many thanks.
Posted by: Fred - Tue-04-09-2018, 19:22 PM
- No Replies
This study looked at the prevalence and incidence of psoriasis and psoriatic arthritis over time in Ontario, Canada.
Quote:Objective:
To estimate the prevalence and incidence of psoriasis and psoriatic arthritis (PsA) over time in Ontario, Canada.
Methods:
We performed a population‐based study of Ontario health administrative data using validated case definitions for psoriasis and PsA. We computed the crude and age/sex‐standardized cumulative prevalence and incidence of psoriasis from 2000 to 2015.
Results:
Among the 10,774,802 individuals aged 20 years and older residing in Ontario in 2015, we identified 273,238 and 18,655 patients with psoriasis and PsA, respectively, equating to cumulative prevalence estimates of 2.54% and 0.17%, respectively. Correcting the prevalence estimates for imperfect sensitivity and specificity resulted in similar estimates. The male‐to‐female ratio was approximately 1.0 for both conditions. For psoriasis, the age/sex‐standardized cumulative prevalence increased from 1.74% in 2000 to 2.32% in 2015. For PsA, the age/sex‐standardized cumulative prevalence increased from 0.09% in 2008 to 0.15% in 2015. Between 2008 and 2015, annual incidence rates for psoriasis decreased, whereas those for PsA remained relatively stable.
Conclusions:
The prevalence and incidence of psoriasis and PsA in Ontario are similar to those observed in Europe and the United States. The steady increase in the prevalence of psoriasis and PsA over the past decade may be due to a combination of population aging, population growth, and increasing life expectancy.
Posted by: Fred - Sat-01-09-2018, 14:33 PM
- Replies (3)
I found this interesting as I no longer bother filling a Dermatology Life Quality Index (DLQI) at my dermatology appointments as I find none of the questions relevant.
Quote:Background:
The Dermatology Life Quality Index (DLQI) is the most frequently used health‐related quality of life (HRQoL) instrument for skin diseases. According to the DLQI instructions the responses “not relevant” and “my skin problem has not at all affected this aspect of life” (“not at all”) have to be scored as 0 = no HRQoL impairments.
Objective:
The aim of this study was to estimate potential bias of DLQI measurements for patients with psoriasis based on items considered to be not relevant.
Methods:
1,243 patients with psoriasis were surveyed in a cross‐sectional study. Disease severity (PASI) and subjective health state (EQ VAS) were compared per DLQI item between patients who answered the respective question “not relevant” and those who answered “not at all”.
Results:
Patients who declared a DLQI item to be not relevant showed a higher disease severity and a lower health state.
Conclusion:
Results indicate that patients who declare a DLQI item to be not relevant have a higher disease related burden than those who do not feel affected by their psoriasis in the same aspect of life. If aspects of life are considered to be not relevant due to high disease burden this should be reflected by a HRQoL instrument.
Posted by: Jopeejay - Sat-01-09-2018, 09:16 AM
- Replies (11)
Hi. I’m Jo and I’ve just joined this forum. I was diagnosed with psoriasis in January 2018 after 6 months of not really knowing what was happening (to my scalp especially). Got nowhere with GP so paid £180 to see a private consultant dermatologist who made the diagnosis in 30 minutes. Prescribed Sebco, Betamousse, Alphosyl shampoo and Eumovate. However, I haven’t really seen any real improvement. Returned to GP who, after telling me that I’m “an unfortunate case” prescribed Dobovet which actually started to help but now my hair is falling out and I’ve got bald patches!! It’s really affecting my confidence. Anyone got any ideas?
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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.