Hi all, I'm trying to sort out how to update my profile on the forum, but can't seem to see how to - any info please would be great, thanks.

hi guys
first my enlish is not good as you guys, but i will try my best to write to this intro.
i am Psoriasis sufferer from Pakistan.it started around 7 years ago.in the start, i use some ointments without going to doctor but it worsen my condition.then i consult with a skin doctor who told me its Psoriasis which has no cure.but at that time it was not spread on all my body, so i did not worry about it much.he advises me to use some ointments which help me in the start, and it stayed under control.
but now i don't know what happen it spread on my all body.only my visible areas are not affected that much.
it is making me socially frighten.i don't want others to see my affected skin because maybe they will think something bad about me or they frighten from me because my disease can affect them also.
i am getting treatment from the doctor.he advises me to take 4 pills every week and applying an ointment.i am getting this treatment from two months.
but my condition is still same.the doctor told it would time to control it.but when i see my body it depresses me.
only my wife know about the condition, and she is helping me allot in treatment.i always try to cover my body so nobody can see my affected skin.
so guys this is my Psoriasis sotry.

I've been experiencing terrible break out for the past month. My dermatologist appointment is it until September 13th and I'm running out of options to stop itching can someone please help.

Hello all,

Has anyone here had problems with cellulitis with their psoriasis?  In the last year, I have developed venous insufficiency  in my lower right leg.  A small nick or bump on my leg turned into a wound and required wound care.  Most of last summer, I was wrapped up in dressings for that.  I have palmar/plantar psoriasis.  It improved, but throughout the year, the wound never quite healed.  Now, with the summer heat, it is back again.  My concern is that the cellulitis is lower on my ankle and closer to the cracks on my heel associated with the psoriasis.  I have been on repeat courses of antibiotics when it was appropriate with skin cultures and fever.  My wound care doctor advised me not to have anymore courses of antibiotics.  I understand that I don't want to take too many because of resistance.  I take a good probiotic daily.  My concern is that if there is bacterial infection, it could cause a staff infection or worse.  Can psoriatic patients have more trouble with infection due to open skin in an area close to the cellulitis?  Any thoughts or suggestions?

Hello everyone!

So, after over 2.5 years on Fumaderm, I've unfortunately made the choice to move on to methotrexate as fumaderm was failing. I'm really disappointed that it stopped working, as it was amazing when it worked. I have just picked up my first prescription from the pharmacy for methotrexate, starting on 2.5 mgs.

I was told to take it in the evenings, so the possible nausea won't interfere with my day. Does anyone else have any other advice to help with possible side effects? Also, I asked about alcohol intake, and was told that the odd drink (as long as I wasn't consistently drinking) should be okay. I do like the odd drink or three at the weekend, has anyone had any negative side effects from the odd drink?

Thanks to anyone who takes the time to reply and/or give advice.

Hi all,

I'm new here, found the club by searching something about psoriasis on google.
I started getting scalp psoriasis in 2011, it got much worse after my dad died. Eventually I went to the GP and got given some betnovate. No real follow up planned, eventually went back and was prescribed sebco. Stinky horrible stuff but damn effective. Since then it's been much better and much worse! I've had stronger steroid applications. 

I started fertility treatment in 2015, and the stress and having my hormones messed with seemed to trigger guttate psoriasis, which was all over my body in little spots, and is now slightly better controlled with mainly flexures and legs being affected. Afternoon a long battle with the GP prior to starting IVF in 2016 I was finally referred to a dermo. I've had various topical treatment since but had to hold off having light therapy as my fertility consultant didn't want me to have it whilst having IVF. (Logistically impossible anyway) 

Well, fast forward to now, unfortunately fertility treatment didn't work, so I am due to start light therapy next week. My psoriasis has been quite good over the spring/summer months as I've been outside a lot, plenty of Vit D! Hoping light therapy helps going into winter cos that's when it hotbed bad again last time. 

I'm seeking natural/holistic ways of managing it. Reducing stress with complementary therapies, currently seeing a medicinal herbalist and planning to try some dietary measures e.g. limiting/eliminating dairy intake. 

Can't wait to make some buddies connecting on here. It can be very isolating.

All the best to everyone,

Lou x

Hi everyone,

I was diagnosed with psoriasis 10 years ago and, before that, I struggled on and off with eczema since I was a child. In addition to using Daivobet, my dermatologist suggested one round of PUVA treatment, which worked amazingly and I was more or less psoriasis free for 3-4 years.

My psoriasis returned in full-force after the birth of both of my children. After my first child, I did another round of PUVA therapy, which was moderately successful. The psoriasis cleared up, but I had returning small patches which I would treat with Daivobet.

After my second child, I did a third and much longer round of PUVA therapy, but the psoriasis returned the moment I stopped. My dermatologist had said that PUVA was my last option, so I pretty much gave up on treatment altogether and decided I would wear long-sleeves and long pants for the rest of my life. It was so time-consuming to visit the dermatologist 3 times a week for light therapy - I was so happy for it to be over!

By coincidence, I went to see a different dermatologist for a different problem, and upon hearing about my continuing battles with psoriasis, she suggested that I try Acitretin/Neotigason. I started with 25mg per day and my psoriasis cleared up completely after 2 weeks! 

I have been taking Acitretin/Neotigason 25mg for 3 months now, and my skin looks completely normal, except for some brown patches from the PUVA. Otherwise, I can actually wear a bikini in public which is something I haven't done in over 7 years!

Of course, I have quite a few side effects from using Acitretin/Neotigason 25mg, which is why I wanted to share this post. My side effects include:
* Extremely dry skin. I have to be religious about moisturising day and night, otherwise my dry skin becomes itchy and irritated. If I scratch my skin, it can bleed easily because it is so sensitive now. I use QV Intensive Body Moisturiser (a product from Australia) which I slather on after my shower in the evening. The texture is a bit like Vaseline but it does a remarkable job of moisturising and keeping the skin soft. It's a bit greasy after you apply it, but it absorbs into the skin rather quickly. 

* Dry hands and feet. In addition to moisturising my body at least once a day, I have to moisturise my hands constantly throughout the day. I have flaky skin all over my palms and the soles of my feet. I'm a bit self-conscious about my dry hands, especially when I'm at a store and I have to hold out my hand for change and the shop assistant will look alarmed at the sight of my dry hands, but I'm happy to accept this over having plaques all over my body! 

* Dry lips. I noticed my dry lips within a few days of starting Acitretin/Neotigason. At first, it was very uncomfortable because no amount of lip balm could make my lips feel normal, but I think I am either used to it now, or it is not as dry as before.

Overall, when I weigh up the side effects to having psoriasis all over my body, I'm happy to put up with the dry skin. My dermatologist wants me to continue for another 2 months before reducing the dosage. I hope the psoriasis will keep at bay for a long time after this because, for once, it is so nice to have clear skin, especially in summer!

I hope my experience above will be helpful to anyone who is considering treatment with Acitretin or Neotigason. I would love to hear about other people's experience also!

Hi all - 

I just wanted to introduce myself and share my story in a succinct manner.  

- Diagnosed with psoriasis in 1988 after a bout of pneumonia.  I was 17 and it was awful.

- From 1989 to 2004, I had my own skin lamp.  It was huge and felt like a physical and mental anchor.  My condition was so bad that I would have to take it home with me on breaks from college (fortunately I went to school only an hour away).  It was ok - the natural sun was better - but it helped keep things in check.  It did nothing for my scalp.  Looking back on this period, I am not sure how I made it through.  I wanted to study abroad, live in NYC, etc. but the need for this lamp made those plans next to impossible.

- In 2004, I moved to Florida from Atlanta.  I got rid of the lamp as the bulbs were done and I just didn't feel like dealing with it anymore.  From 2004 - 2011, natural sun and various creams helped a little.  I guess I just grinned and bore it.

- In 2011, my skin got really bad and I took the plunge with Humira. Within a few weeks, I was getting clear.

- In 2015, plaques returned to my legs.  I started on Otezla along with the Humira and that did the trick.

- In 2017, I had to switch insurance and my new carrier (Florida Blue) would not cover Humira and Otezla.  So my derm switched me to Stelara which was a complete failure.  The dosing intervals were too far apart and the plaques returned in full force to my legs.  

- I went back on Otezla and decided to fight the insurance company but it's a difficult battle.  It will only approve 1 biologic.

- So now, I've just begun Cosentyx.  I had the first two doses last week.  Haven't seen much improvement and my plaques are itchier than ever.  I am hoping I have good results.  Been kind of lethargic from it and usually I am pretty high energy.

My derm wanted me to try Tremfya (a new med from Jaansen) which was approved in June.  Two other derms had never heard of it so I opted not to be one of the first to try.

I should also mention that I have been self-employed since 2001.  I was on my wife's corporate plan from 2005 to 2011.  However, when we were done with Cobra, trying to get insurance was such an uphill battle.  Fortunately, Obamacare kicked in right when I needed to get a new plan and that allowed me to get my meds covered.  Otherwise, no carrier would insure me.

I can't afford $25,000/year in meds but I can afford good insurance.  However, our system is so messed up that it's just hard to buy it no matter if you can afford it.  I have no clue if Florida Blue will approve the Cosentyx (especially since we're in appeal on the Otezla - I don't even know how to cancel an appeal or what number to call to do so!).  It is such a mess and new legislation doesn't seem to address any issues of mine.  

So anyway, greetings.  Please send some good vibes that Consentyx is going to work for me! Thanks,

Jonathan

I have had P for 17 years ..scalp, toenails, knees etc  and then about a month ago I noticed red patches on both sides of my mouth that went up to the edges of my nose. It was itchy, burning and very painful. It felt as though I had food caked onto my face.
I seen my GP straight away who confirmed my worst fear. The P had began on my face. She prescribed a betamethasone cream which helped at first but then got worse  WAY worse.
I go for light therapy 2X a week at my Derm. office so on my next visit I had him look at it.He concurred it was P as well, Agreed I continue with the cream and expose it to the lights.
This just aggravated it. The burning pain was horrible. This continued for 2 weeks,, I went in again to see the derm. who took a closer look and said "you know this could be perioral dermatitis"  so I discontinued all use of steriod topicals , and was given a RX for another topical and the rash is now near gone!
I wanted to share this in case others have this exp. I am thankful that the P has not moved to my face
Perioral dermatitis can occur for many reasons but is very common on someone who uses topical steriod creams or elecom over an extended period of time

I had my Stelara yesterday, and the nurse told me about Humira having had an ingredients change - I don't know if anyone else knew this?

He said they changed the preservative because it used to sting so much, but afterwards people started saying it wasn't working as well. They claimed the ingredient change shouldn't cause it to work any differently, but anecdotally it may have. I don't know when the change came about but when I tried it it didn't sting, nor did the drug work on me.

Hello, I hope it's okay to start a new thread. I tried searching to see if there was one for this topic, and didn't see one, but I'm new to the forum so could be wrong. 
I have been on a corticosteriod (Clobetosal .05%) for the last 2-3 weeks for the first time in 17 years for fairly vigorous guttate psoriasis. The intent was just to give me a break, and boy have I enjoyed it! but now I need to taper off. Any advice? I figure I'll start with going to once a day, then every other day then after that maybe begin to add plain lotion to the bottle to weaken strength? Or is that last bit unnecessary?
I would like to hope that I won't have a massive flare as I taper off. I know it's a possibility. If at all possible, please do not reply with horror stories, because I want to remain positive and hopeful! Thank you for understanding.

Hi, I'm happy to see if this is a place that will be supportive and helpful. I was on Inspire before it was Inspire and after, and I really got discouraged with the snarkiness factor. 
I've had psoriasis since my late 20s, in my mid 50s now. I also have other autoimmune conditions like interstitial cystitis and what I thought was Hashimotos thyroidosis, but that just got challenged by a new ND who said she thought it wasn't, that I had hypothroidism for sure but not Hashis. Lately (menopause, death of beloved pet, depressing state of nation/world) the guttate has gotten worse and worse. Because I was treating primarily with diet and supplements, I was starting to blame myself for not dialing in the diet and supplements adequately.
I recently (two weeks ago) used a topical corticosteriod. I will post a question about that in another thread. I also started LDN.  My new ND is going to test for Strept, which she says is correlated with Guttate P. Also viral load, also she suspects Lyme disease! So I guess I'm starting a new phase of my healing journey. 
Thanks for reading!

Hello,

I am suffering of a mild psoriasis for a good whilw now. It's going to be my one year anniversary soon, and honestly I don't think i am up for celebration as I am completely fed up. Sometimes I am thinking of cutting my elbows and slammng it againts the wall. 

It began during my college study, i was stressed, i smoked a lot. I began to devellop a bronchitis, and ... Both of my elbows Began to itch. The two conditions combined with a great fatigue i couldn't sleep trought. It's also worthy to say that i was hospitalized for a "non specified psyschosis" for 6 months prior my return in college. This long period of prolonged stress may have triggered the P.

Since the beginning of my P on my elbows, i have noticed I have somehow probably suffered of it for many years but it wasn't a big concern as it wasnt flaring up furiously but rather would only itch a bit here and there on my scalp, or on my torso.

As of today the only part of my body that is still a concern is my left elbow. My right elbow is 98% clear. The left elbow is where lies my problems and concerns.

The problem is how thick, and how deep it is. Its like if I have wood in my elbow. I Think of it as the famous Hans Ruedi Giger's Alien creature. Imagine the tail of the creature, the shell, and the repetitivenes of the structure... It is as if tails are creping inside of my elbow. It is my analogy, as silly ostupid as it may sound. Another analogy is cat Claws. The "hook" shaped hardened skins interlocked, braided togheter. 

It is my impression that some P is "older" and thikier and looks like its a sort of root. It wasnt what i was expecting whn it first started to itch one year ago. I couldnt imagine i had studs of skin deep inside. I was upset however by the claws tips poking out. 

I became less and less hopeful as I understood that the elbow skin structure is complicated, that it couldnt be scratched away with my nails alone. Sort of like the tip of the iceberg, the deeper it goes the more complicated and hellish it is. No matter how desperate i am, i am not able to get the dead stuff (or semi dead..) skin studs out. 

A week ago I began to read about medical treatments. First, i got OTC ointment/cream at 1% cortisol. Does nothing but Sooth and relax my skin, a bit of improvement in comfort. But then I added another cream into the mix. Salicilyc acid, which is i think a weak equivalent of some precribed cream approved for pso in several countries. 

The mix of cortisol and salicilyc makes it easier to losen the thick skin. It's now possible for me to get rid of the thickiest skin that make my life impossible. But, this is a process. Sort of like dismantling a complicated puzzle.

But, this is where i am coming to you. I have read a lot, I am quite surprised on how some persons are resilient or patient. May be i am not going to get any relief from working on my elbow skin "mechanically" with a thin needle and my nails rather than waiting passively for some improvement with some cream. 

It is known that the condition is re-trigerred when the skin is damaged or tampered with. I've experiemented it. I am tring to be gentle with it when i am fighting no matter how F**king fed up I am.  

So is this a story that ressemble yours ? Where were you able to get rid of the bony skin with salicilyc acid ? Is this a good way to get my elbow back or this is just Unrealistic ?

I understand that it may seem unpraticable. That some P is stubborn, and that its not recommended to "Scratch it away", as it can worsen, or it could get infected. But may be you get the point. 

So that is all for now, go ahhead with your toughts. Please try to keep in mind that i am not stupid as I may sound And i am not encouraging anyone to do what i am doing. I hope i am clear, it isnt simple as it sound, i am doing what seem to be the bes thing in my own particular situation. If yours is simillar and you went by the same path then share your toughts.



Thanks for reading !
Mogwai

This study suggest almost 50% of psoriasis patients suffer with substantial fatigue.

Quote:

---

Background:
Fatigue is associated with various chronic inflammatory diseases, but few studies have focused on its occurrence in psoriasis.

Objectives:
To describe fatigue prevalence and degree among patients with chronic plaque psoriasis vs. age- and sex-matched healthy subjects, and to examine how fatigue is influenced by essential clinical and demographic factors.

Methods:
In 84 patients and 84 healthy subjects, fatigue severity was assessed using three different generic fatigue instruments: the fatigue Visual Analogue Scale (fVAS), the Fatigue Severity Scale (FSS) and the Short Form 36 (SF-36) Vitality scale. Cut-off scores for clinically important fatigue were defined as ≥ 4 for FSS, ≥ 50 for fVAS and ≤ 35 for the SF-36 Vitality scale. Disease activity was evaluated using the Psoriasis Area and Severity Index (PASI), and the impact on quality of life with the Dermatology Life Quality Index (DLQI).

Results:
Patients and healthy control subjects, respectively, showed median fVAS scores of 51 [interquartile range (IQR) 21–67] and 11 (IQR 3–20); FSS scores of 4 (IQR 2·5–5·3) and 1·6 (IQR 1·1–2·2); and SF-36 Vitality scores of 43 (IQR 25–85) and 73 (IQR 65–85). The rates of clinically important fatigue among patients vs. healthy controls, respectively, were 51% vs. 4% (fVAS); 52% vs. 4% (FSS); and 42% vs. 2% (SF-36 Vitality) (P < 0·001 for all differences). Fatigue was associated with DLQI scores, but not PASI scores, in univariate analysis but not in multivariate analysis.

Conclusions:
Nearly 50% of patients with psoriasis suffered from substantial fatigue. Fatigue severity was associated with smoking, pain and depression, but not with psoriasis severity.

This study looked at the drug survival rate of methotrexate in psoriasis patients and suggests only 15% stay on it past 5 years.

Quote:

---

Background:
As methotrexate (MTX) is a widely used treatment for psoriasis, it is important to gain insight into the reasons for the discontinuation of MTX and to understand the determinants for drug survival.

Objectives:
To describe 5-year drug survival for MTX in patients with psoriasis, split according to different reasons for discontinuation, and to identify the determinants for drug survival.

Methods:
Data were extracted from a prospective psoriasis registry of patients treated with MTX (MTX-CAPTURE). Drug survival was analysed using Kaplan–Meier estimates and the determinants for discontinuation were analysed using Cox regression analysis. Analyses were split according to the reason for discontinuation: side-effects or ineffectiveness.

Results:
We included 85 patients treated with MTX, with a maximum treatment duration of 5·2 years. The overall drug survival rates were 63%, 30% and 15% after 1, 3 and 5 years, respectively. The median survival was 1·8 years. Overall, 55 patients (65%) discontinued MTX for the following reasons: side-effects (35%), ineffectiveness (26%), combination of side-effects and ineffectiveness (13%), other reasons (16%) and 11% were lost to follow-up. The most reported side-effects were gastrointestinal symptoms, despite the use of folic acid in 99% of patients. Based on univariate analysis, a high Psoriasis Area and Severity Index score and a high score on the visual analogue scale for disease severity at baseline were possible determinants for a short drug survival.

Conclusions:
Drug survival of MTX was low with 15% of patients ‘on drug’ after 5 years. Side-effects alone or in combination with inadequate disease control were more important in the context of treatment discontinuation than inadequate disease control alone.

Hello Everybody.

I've got the plaque psoriasis. I've tried tons of medication. Really Stelara is the only one that has worked.

Very beginning stages here for Tremfya, (the new medicine out by the same makers of Stelara). Doctor suggested it since last time I was on Stelara, I didn't see near as improvement as I did the first time I was on Stelara.

Trying to get insurance to approve this new medication. Hopefully I can start within the next few weeks.

Will update when I hear from insurance.

Following on from this thread Should Dovonex be available without prescription Dovonex will now be available without prescription in the UK.

Quote:

---

Today the Medicines and Healthcare products Regulatory Agency (MHRA) announced the approval of Dovonex Psoriasis 50microgram/g Ointment which will be available through pharmacies without prescription.

Over a million people are estimated to be affected by psoriasis in the UK. The availability of this medicine from pharmacies will increase the choice patients have of where to obtain treatment when their condition recurs.

‘Dovonex Psoriasis Ointment’ contains calcipotriol, a vitamin D analogue and the medication will be supplied as ointment in a 60gtube.

It will be sold after a consultation with a pharmacist and is suitable for adults aged over 18, with mild to moderate plaque psoriasis which has been previously diagnosed by a doctor.

This treatment can be used for up to 12 weeks after which people will be advised to see their doctor about ongoing treatment.

Pharmacists and their staff will be able to provide suitable advice to the patient to ensure that the product is suitable for them. The outer packaging and the patient information leaflet also include an image of plaque psoriasis which will help both pharmacists and patients in this respect.

MHRA is committed to widening access to medicines for the benefit of public health when it is safe to do so. The product was reclassified following a public consultation held earlier this year.

Hello All!!

Ive had plaque/scalp psoriasis since I was 17 (Now 30). I have been anywhere on the scale from mild to moderate to severe. Tried tons of medications, from topicals to injections to pills.

A few years ago, I was covered with spots and my dermatologist suggested Stelara. OMG this is a miracle drug. I went from my back completely covered in plaques to %100 clear. I seriously LOVED this medication. Buuuuut, I became pregnant with my first child, So I had to come off of the medicine for the duration of my pregnancy. And the plaques started flaring back up.

After I had my first baby, I tried to get back on Stelara, but my insurance made me try Humira first (im assuming because its cheaper). I HATED Humira. My husband hated Humira. He was the one that would have to pull the trigger on those self injecting pens they give you, and they suck. I cried every time. More importantly I never saw any improvement. Went Back to my doctor and we tried again for Stelara, Insurance approved it this time, however, I only saw about 50% clearance.

Once again I became pregnant with my second child so I had to come off of Stelara. After the baby, the doctor suggested I try Otezla. I am currently on Otezla. Ive been on Otezla since January. Im really not seeing any results. Plus, I feel like my stomach hurts more often than not now. And i'm not liking taking 2 Otezla pills every single day.

I've got a doctors appointment this Thursday to see if I can try something else, I just don't know which way to go. Ive seen commericals for cosentyx or Taltz, how does everyone feel about these? Should I try the Stelara again? Do I have any other options?

Thanks,
aecrawford1

For anyone who needs a new natural remedy, I've found that Aloe Vera Gel (helps soothe itching and moistures the skin) and Argon oil which also soothes the itching right away and also helps the skin to return to its pigment works best.For the best results apply the Aloe and Argon oil 3times a day. It is best to do this after a shower.

Not sure if this is a natural product or to become prescribed - I've just come across articles on something called endolysins - apparently people with eczema have been found to have their skin bacterial flora changed to mostly staphylococcus aurea and the endolysins redress the balance. The website for the product doesn't have a psoriasis targeted product but it does mention psoriasis.
The reason I'm putting it this way is that I don't want to be advertising a product but I'm certainly interested in finding out more. I believe it has been developed in the Netherlands..

Any more info on this?