Howdy everyone:

I ran across this website when trying to research about coverage for Stelara.  Does anyone have any information about Stelara costs and hidden problems with Janssen's co-pay program?   It seems too good to be true.  Has anyone had any bad experiences with the co-pay plan?  Please read below and help if you can.

The patient here is my wife--her English is limited enough that I do most of the medical research and talk to most of her doctors.

Background:
About 4 months ago wife finally a diagnosis of psoriasis for skin problems on her feet. The dermatologist asked a few follow-up questions about eczema and hand stiffness, gave a prescription for Methotrexate, and referred to a rheumatologist.
The rheumatologist didn't think much of the psoriatic arthritis possibility but said that Methotrexate is a treatment for it so see what happens.  He brushed off the mild osteoarthritis in her knees that has been bothering her for 14 years--no treatment seems to help with that--at least nothing the insurance will cover like Hylagan.

Wife didn't have much improvement for two months so the dermatologist increased the dose for a month.  Wife had some marginal improvement at the higher dose but nothing to get excited about.  So the dermatologist suggested Stelara.  We stopped the Methotrexate.  The feet symptoms and hand stiffness got worse rather quickly.  I am thinking that a lot of her chronic health problems are actually psoriasis and psoriatic arthritis.

I know from reading that Stelara has helped a number of people here.  My concern is the cost.  Our insurance denied the authorization request.  Even if it was authorized we probably couldn't afford the 20% copay.  The drug manufacturer has some co-pay program where the medicine may be free for a year but my wife and I have trouble believing this and are paranoid about getting hit with catastrophic medical bills.  The plan says $10.00 per dose for $10,000.00 annual maximum benefit.  The street price is $10,000 per shot.  At that price we could afford 1 shot.  Even if, somehow, we only had to pay $10 per dose for all six annual doses we can't afford to continue treatment after that.  What's next?  I know there is no cure--just treatment.  We just don't want to go bankrupt getting treatment. 

Any advice or information from anyone in the know would be greatly appreciated.
I'll keep posting updates.  We see the rheumatologist in two days and the dermatologist is offering the starter shot free while they wait for approval from Janssen.  We really aren't sure about this.

Thanks.  Sorry for the novel.

Hello everyone,

I am a new member here, thank you for this club it is a nice forum
My name is Erar, I am from Saudi; I have plaque psoriasis since 2006
I am fine and and have experience to how live with it, 

The main reason, I become member to be part of my people
And support them. Sadly we don't have in Saudi psoriasis group
Or maby I don't know about it. 

I would like to find psoriasis group that traveling together
Sharing experience etc. 
always thinking to travel to natural spa for example but I don't think
Is good idea to go alone. Maybe with group more benefit and 
Even good for many things from cost to many things maybe we can
Find it. 

I am happy to be here and hope I can help 

Regards

Hi all

So basically I've had psoriasis since I was 14 (30 now), at one point it had taken over my legs, back, stomach and scalp. Been using the creams, gels, ointments and solutions provided by my gp which did help but never got rid of it. So I've never been free of psoriasis since I've had it and I've even had uv treatment and methotrexate at one point but still no luck so I basically decided to stop using everything except the dovobet gel for my scalp and just came to terms with the fact that I will never get rid of it. Anyway I decided to join a gym to loose a little weight and get in shape somewhat, there was no change in my diet when I started and continued like this for the first 3 months still looking the same but my psoriasis did improve slightly. Then I went on a low carb diet for 8 weeks which was definitely the game changer, I lost and stone and more importantly 90% of the psoriasis had disappeared and whatever remained I used to steriod based treatment and for the first time in 16 years I was free of psoriasis. I never heard or read that diet could help psoriasis until after I had noticed changes on my body, guys I cannot stress this enough, it actually works. Plz plz plz try it, for your own benefit. It wasn't a easy 8 weeks but it was definitely worth it.

So my diet and gym plan

Mon and Tuesday gym
Wednesday rest
Thursday and Friday gym
Saturday and Sunday rest

1 hour intense sessions of cardio and weights

My diet was simple and easy

8am Breakfast boiled eggs or oats or porridge with low fat milk and a protein shake

11am apple

1pm lunch chicken or beef or fish with a green salad

3 pm pear

6pm dinner chicken or beef or fish with vegetables

And plenty of water throughout the day

Saturday I had 1 cheat meal ?

All foods cooked healthy, touch of olive oil only if I had to. No bread, fizzy drinks or juices, and no junk food at all.

Please try it and I hope it helps you the way it helped me

Hi, new to this forum malarkey so apologies if this is in the wrong place. I have searched this site for opinions on Sorion creme but can't find anyone using it. Anyways, I stumbled across this while reading some other rubbish and looked at the reviews on Amazon. I was surprised to find that almost all of the reviews were positive and sufferers were raving about it. God knows how much cash I have wasted over the years on lotions and potions but against my better judgement I again parted with £17 for a (small) tube of this stuff. It came three days ago and I have started to use it religiously. I think it takes a while to take effect but I'm sure my elbows are calming down a bit.   They do stuff for the scalp as well but I'll see how this goes first before I part with any more cash. I
I'll keep you all informed of any progress but would love to know if anybody else has tried this and what were the results?

Hello,

I don’t normally talk about my condition. Well, not unless it is to a doctor. Actually, I lie, I have not talked to a doctor in six years. When I used to talk to them I used the minimum number of words to describe my condition and then spent the rest of the time staring at them foolishly and trying to keep my anxiety under control.  Come to think of it, I did the exact same thing with dentists, pharmacists, grocery store owners and random tourists asking for directions.

Two days ago, I caught a cold and now my whole body feels so tight I wish I were a snake so that I could shed this skin and get some relief. But, since I couldn’t do that and since I’m typing this at four in the morning, my best next course of action was to do what I’ve done for years, go to uncle Google and see if there are any new treatments and tricks to ease this discomfort. Through a circuitous route of adverts, websites requiring registration before you read them and clinical journals, Uncle G eventually sent me here.

I always knew I wasn’t alone in this. I read about others suffering from the same thing and sometimes, on a crowded train or bus, spotted one or two with very clear signs. Sadly, they didn’t return my “kindred spirit” looks and probably thought me very creepy. Now I find there is a whole forum of people with the same condition and, even if this is my last ever post on here, know that I could read their postings and occasionally mutter to myself “that’s exactly how it is.  The irritating unreachable spot under the shoulder blade, right?”

In fact, it’s not only the shoulder blade. It’s in the bits that clothes can hide and the bits it can’t. I have a black face but the constant use of those strong creams in the early days have made me look like one of Theresa May’s favourite leopard skin heels (all pigmented and multi-coloured). The bits on my arms and legs are as if I walked into a tattoo parlour and demanded they paint bits of poppadum all over me. I could swear I have one in the shape of a heart.

Beards are trendy these days.  I would love to grow one and know that mine would be great.  I can actually grow a full beard if I wanted to, there are no missing bits of dry islands on my face (well other than the plaque). But, like buying a Ferrari when you’re banned from driving, growing a beard that you can’t stroke is pointless.

I once was having lunch with two female friends. One of them started praising my hands and the other laughed. Then both took a hand each and went on and on about how great and smooth and glowing my hands were, how shiny my nails were and how beautiful my skin was.  I asked them to volunteer any positive comments on the rest of me but they were only interested and fascinated with my hands.  When the condition started and found its way to my (allegedly) lovely nails, I kept my hands in my pockets whenever I met those ladies again.

I used to have hair. I am not sure if I lost it naturally or because of the condition. Incidentally, I refer to it as the “condition” because I don’t really like its name.  I once had an idea that the reason all the medications were never a full cure was because psoriasis was never a full word. That ‘P’ gives me the same itch as the plaque itself.

Anyway, I’m forty-five, a father of four and had this condition for over 20 years.  I apologise if I bored you with my whinging but I really have a cold and my skin really feels tight and I wanted to vent to (what I hope are) like-minded people.

p.s
I know I should probably go see a doctor and I will.  I probably should also go to sleep but will try to keep an eye on the site on a daily basis. Glad to be a member of you’ll have me.

Hi all, am so pleased to find somewhere I can get some support. My story briefly..........I have always had a tiny patch of scalp psoriasis which was annoying but no big deal. Around 2 years ago I lost my job in stressful circumstances and immediately (and for the first time) I had plaques appear on my lower legs. This was kept reasonably well in control via some steroid creams (prescribed) but in the last few months (and again stress related I think) the plaques have spread quickly and I now have much of my legs, arms and some of my back fairly covered in plaques. My GP had prescribed Dovobet which initially helped but then seemed to stop working and after a few weeks use I came off and was prescribed Dovobex as an alternative. This has proven to be difficult as although the original plaques have calmed and smoothed a little, I am still getting further spread of new plaques and I have intense periods where my legs and arms are incredibly itchy. I have been using the Dovobex for around 2 weeks so maybe a bit early to tell if effective. I guess my questions are as follows:

1. How long does the Dovobex typically take to work?
2. Is the spread of new plaques unrelated to the use of Dovobex / Dovobet?
3. Can anyone recommend how to calm the intense itchy hours I get?? 
4. Are there any tricks to control the spread of plaques to parts of my body that are unaffected?

I am very grateful for all offers of help.

Dunc

All I want is real people to converse/interact with who have a similar condition. I hate feeling judged on my outside appearance for plaque psoriasis. I have this 'joke' I tell the people who try to understand me when most people treat me badly. I say God made my outsides match my insides- calloused. That is not true. But its something to say that they will try to understand. That's why I'm giving this site a try. If this doesn't work... then, yeah... I really am as alone as I feel.

First off, I'd like to say that I feel happy I can type out one of my "Dear Diary" entries I type on Word 2016 (then erase immediately afterward) here and maybe get feedback. I always wrote about my psoriasis and how it affects my life and life decisions. 

This feels weird. I'm sorry but I think it would be easier if I write how i'm used to. Be warned that I am not a grammar genius or a writer. 

Dear Diary,
     I have psoriasis. Plaque psoriasis. I was diagnosed in 2015. I didn't know it then, but in 2009, during the pregnancy of my third, and last child, I noticed a 'spot' on the back of my right calf. It was about the size of a dime. I didn't know what it was. I used make-up to hide the spot, thinking it was a part of pregnancy and would go away. It didn't go away. 

    I don't know when it happened. I was so unaware of what I had. In 2013 I had small strips of white 'scabs' on my shins and smalls blotches on my elbows. I found out through Googling that I had psoriasis. I was devastated. Little did I know that that was nothing compared to what I have now. And right now I feel blessed that I have learned how much worse my condition could be but is not. 

    Right now I have psoriasis on my scalp (no hair loss), my elbows are covered in plaques with dime to quarter sized spots on both arms (I'll NEVER go out in public uncovered),worse, my legs covered almost 90% (my biggest issue, explain later on), I have a lot of pencil eraser spots on my back, and i have a small spot developing on my face. 

    My legs. I used to love wearing capris. Back then, my self conscious issues were the size of my calves. Now they're covered in thick, yellow-gray-silvery plaques that itch horrendously. I've scratched myself soooo raw once that I caught a staph infection which led to sepsis then necrotizing fasciitis. I was in I.C.U. and the amputation of my leg was very real. Luckily, I still have my leg. 

    Right now, I'm at a loss for what I can do to help me live a more satisfying life. I've tried Triaminocolone, Clobetasol, Methotrexate, and now I'm preparing to try the Humira pen injections. From what I've read, they're not so effective on plaque psoriasis and that they HURT. I am so nervous. 

    Also, I should add that I have PCOS and have recently been diagnosed with type 2 diabetes. 

    I feel so defeated. Beaten. I couldn't take another blow...  but maybe I could. 

    Ugh... I do not know. But I'm pretty sure I will not give up.

October 4, 2016 I received my first two injections of Cosentyx.  I saw my regular dermatologist as well as a second opinion. Both came up with a PASI score of 15%.  When I stopped the Humira injections I was 3% at the end of August. I had to stop injecting Humira due to a severe reaction to the drug after increasing the dose from bi-weekly to weekly Humira injections.  My psoriatic arthritis has been much worse for the past few months.  Also, I have one very swollen toe caused by the psoriatic arthritis.  Schedule as follows:

Week 0= Two injections
Week 1= Two injections
Week 2= Two injections
Week 3= Two injections
Week 4= Two injections

Really hoping this will provide some relief.

Hello all. I have just signed up today! I have had psoriasis for about 25 years.age 37 now. I have been on various treatments over the years the most recent being humira and enbrel injections. I have just been approved for stelera and am waiting on a delivery. I am really hopeful of this being the one!!! Wish me luck!!

My P is usually on my elbows, one knee and a few spots here and there, plus on my scalp. I have a home uvb machine that would control it, but never completely get rid of it.

Over the last while it has become way worse. I have spots all over. The backs of my hands are covered with small spots that seem to almost merge to cover the backs. My arms, sides and legs are dotted as well my other knee, ankle, sides, butt have small potato chip sized plaques. I have a new plaque under my left eyebrow and on my forehead. Something seems to be going on with my back. The old plaques on my knee, elbows etc. are larger and way thicker. All the spots are a new extra thick style plaques.

Anyone experience this? Are all the spots guttate?

Should I consider some hardcore immune drugs?

Any insights are appreciated.

For those of you that have had good results with dovonex, did you find it took a little while for the results to be apparent or was it just a day or two like with the steroid creams. Currently been using dovonex for 3 days and it doesn't seem to be doing much as of yet except helping to keep the area moisturised...

Really hoping to see some results as using dovobet, even short term, gives me folliculitis, particularly on my biggest patch of psoriasis. And obviously it shouldn't be used long term anyway.

Hi, I was wondering if there was anywhere to look which shows pictures of examples of psoriasis coverage and what score they have?
I've only been scored once and I got the distinct impression the nurse hadn't don't it before but was just following the printed guidelines, and I'm interested to get a better idea of different levels if severity and what they look like.

Hi @all.

There are some threads here about Acitretin but i will start a new one. Maybe we can change some experiences and get some answers on open questions.

my name is phil and i am from germany so please excuse the wrong spelling and other mistakes :-) i read a lot in this forum and now i decided to give you a bit of my experiences back. there is a lot of information in this forum and all of you seem to be very nice people :-)

i am 34 and in the middle of may (so about 4.5 months ago my hand started itching. The dermatologist (is that right) said "ekzem" and gave me cortison creme and said "good luck". after 2 months of using the cream and a lot of other creme i went to the dermatologic clinic here in munich because they are specialized for treatments of the ekzem. they also said: ekzem (second time i had the diagnose of a ekzem).

So i started with a PUVA-treatment at the end of juliy until the beginning of september. it helped a bit but not as good as i was hoping and so they decided to give me toctino. The doctor that had to decide about the dose (he is something like the superstar in this hospital concerning all things with psoriasis. and, surprise: he is really nice) took a look at my hand and said that toctino is not the right medicine for psoriasis pustulosa and i had to take neotigason. nice, after 1.5 months i finally got a new diagnose.

anyway i started with 30mg per day four weeks ago. minimal side effects (i am always tired, sometimes i got a headache) but the skin on the hands and the feet is really really peelng off. blood values are also very good at the moment.
 
but no itching and no pustulosa at the moment only red skin on the hands and feet and i hope the peeling ends soon, i heard and read that this is a normal side effect. will continue with the 30mg per day until i went to the hospital in 2 weeks. 

so long, greetings from germany and all the best to all of you
philipp

As you know I don't like advertising on here and this could be looked at as a publicity stunt*. But I think it's worth showing as the results, (if correct) don't make good reading.

Quote:

---

Novartis presented new findings from the largest global survey to date of people with psoriasis, showing many do not achieve the treatment goal of clear skin or even believe it is a realistic goal. People with the disease also report that they face discrimination, humiliation, and mental illness, according to the research presented at the European Academy of Dermatology and Venereology (EADV) Congress.

While real-world evidence presented at EADV demonstrated that clear skin significantly improves quality of life, the survey found over half (57%) did not achieve clear or almost clear skin, and nearly a third of people (28%) had to wait five years before receiving treatment that resulted in clear or almost clear skin.

"Every patient deserves the opportunity to achieve clear skin, but this research tells us many are not given the chance," said Vasant Narasimhan, Global Head, Drug Development and Chief Medical Officer, Novartis. "Novartis supports the World Health Organization's resolution to make psoriasis a global health priority and help patients overcome the heartbreaking physical, societal and psychological challenges the condition presents."

Over 8,300 people from 31 countries took part in the survey, which aimed to improve the understanding of patients' perspectives on clear skin and, importantly, the impact of not achieving it. This major research initiative represents the largest ever partnership between Novartis and patient organizations, including 25 groups from around the world.

The survey findings reinforce the need for greater education and engagement of healthcare professionals and patients about the achievability of clear or almost clear skin as a treatment goal. In addition, they demonstrate the detrimental impact psoriasis has on patients' lives. The majority of people surveyed (84%) were suffering discrimination and humiliation, while almost half (43%) of patients felt psoriasis had affected their relationships and made it difficult to form intimate relationships.

A third of people (38%) surveyed also reported that they have been diagnosed with a psychological condition due to psoriasis, with one in four diagnosed with anxiety (24%) or depression (25%). Patients with anxiety or depression were also found to suffer more severe disease and worse quality of life in other research presented at EADV, further emphasizing the link between the psychological and physical aspects of the disease.

Hi all.

So obviously steroid creams are a no no for that area so what is best to use to clear up psoriasis down there. Notice I am getting a bit on the underside of my penis, towards the scrotum (sorry for the graphic description). Its not at all flakey or raised, it just looks a bit red.

Seeing as nothing seems to have much of an affect on the psoriasis on other areas of my body except steroids-based creams, but you can't use them here, I'm a bit worried

Thanks!

I have just switched from Stelara to Cosentyx and the dose got me thinking about why they are so different.

For example:

Humira: 40mg twice per month.

Enbrel: 50mg per week.

Stelara: 45mg every three months (90mg if over 100Kg).

Cosentyx: 300mg monthly.

So why the big difference between brands?

How are your experiences with your psoriasis and relationships? Are your partners understanding and supportive? Anyone had a break up because of it?

I know this is a shallow topic and I hope no one thinks bad of me for making it. Just feeling a bit worried at the moment. Started a relationship with a great girl that I love to bits but just worried about what she may think. Only have minor psoriasis so I've been able to keep it hidden but I worry about it getting worse etc.

I know people will say 'well if it bothers her she isn't worth your time and you are better off without' which is very true but i am sure you can appreciate it doesn't make me feel much better right now.

I joined this club about a month ago for advice on my newly aquired pustular psoriosis i was advised by dermatologist to use cloboderm, exorex and dovonex on a monthly rotation also to clingfilm area after each application. On starting this advice at the moment my foot is clear, which i hope will continue. So for anybody else who suffers from pp i can recommend this treatment.