Sick to death of psoriasis

[TeddyIsaHe]

I have finally been referred to a dermatologist and a rheumatologist so this is more a moan than anything else.

I’ve had psoriasis for 15 years and I’m sick, sick sick of it. It’s painful, unsightly, itchy and now in my joints meaning at 30 years old I can barely walk (not fun with a lively 2 year old).

I’ve tried everything except biological treatments. The only time I’ve been free of it was when I was pregnant. I have Guttate, scalp, plaque, nail, inverse and psoriatic arthritis.

Anyone else want to join me in venting about this bloody awful disease? Fuck psoriasis!

They’ll do XRays too looking for areas with erosions( damage) which will give an indication of whether your pain is definitely due to psoriasic arthritis particularly if you’re not particularly symptomatic at the moment.

Another saying Humira is a gamechanger. I developed psoriasis from no-where about 12 years ago (I'm in my mid fifties) and got referred quite quickly to dermatology as the doc wasnt sure of the diagnosis. I had to go through the creams, and the light treatment. Then came methotrexate which I abolsutely could not bear. Hated the tablets so they put me on injections but they were as bad. Told them I would rather suffer with the psoriasis than inject another dose.

They then agreed to Humira and it literally transofrmed my skin. Interestingly it has just come off licence so can be made more cheaply (I got a letter saying I was being changed to another name of drug which as I understand it has the same ingredients but is much cheaper for the NHS to buy) so hopefully it will become more available to those in need than it was previously.

I have no side effects as far as I'm aware, and although I am apparently more susceptible to picking up illnesses due to a surpressed immune system, I've honestly never been better! My specialist thinks it may be because my mentally I'm so much happier.

You really have to make them understand very early on just how miserable you are and how it affects your day to day life. Good luck with your consultations OP x

I really sympathise. I've always been an elbows, knees and scalp sufferer with the odd other patches here and there. It's debilitating.

Always got a mad episode of guttate when I had a throat infection.

Dovobet and psoriasis sunbeds kept it relatively under control.

Some of the cases on here are obvs much, much worse

Its disappearance was the only thing I enjoyed about being pregnant.

Then, last year (I'm 40), it disappeared apart from a bit on my c-section scar. No idea why. No lifestyle changes. No drinking cider vinegar or bathing in saffron. It just went. It's been gone for six months.

I still only wear long sleeves out of habit.

Glad I found this thread. Started methotrexate 3 months ago form skin psoriasis. My joints are not affected. Having difficulty getting up to a 15mg dose. Went from 12.5 to 15 and felt really sick for a few days and unbelievably tired. Gone back to 12.5 on which I feel sick for about a day or 2. But there is barely any evidence of improvement. Got a consultant appointment in April. He did say the 3 month mark is important and he could see a bit of improvement.
Also left the decision totally up to me whether to move to injections or give up.
Are there less side affects if you inject it and might it work better?
It’s a shitty condition and I would really like it under control by the summer.

And yes if anyone else tells me to cut out dairy or something I might strangle them. Also no amount of moisturising is going to get rid of psoriasis.

@lazymum99 I speak from no experience yet, but in your shoes I’d be asking to try something else. Being rough for 2 days sounds like no fun at all! Especially when there’s better things out there with less side effects and seemingly much more effective.

Have you tried aloe Vera (patronising head tilt)?

I know it maybe well intentioned but I am sick to death of random people with no experience of the disease telling me what to rub on it! Or indeed that my diet must be to blame.

It's a complex autoimmune disease and the body's reaction to trauma. Hence it can be triggered by bereavement, stress, illness and many other forms of traumatic experience. Fucking moisturiser won't touch it!

I feel your pain OP and hope you find a way of managing it. I have been covered with guttate for most of the last 20 years. It wanes and flares . Currently I have a home UVA canopy that is helping me to manage mine.

I feel your pain, have had psoriasis for 20+ years now.
If your Derm and your RH nurse will sign off Humira it's worth a try. I'm on Stelara now (which is another biologic) and it's been a game changer. You'd never guess I had psoriasis. Used to have a 90% coverage on my scalp and around 75% on my body. It was painful and embarrassing.
Now, apart from an injection every 12 weeks I'd never know I had it.

I have severe palmoplantar hyperkeratotic psoriasis. It started as a small area of dry skin on one of my toes. It now covers pretty much all of the soles of both feet and my palms The skin thickens and then I get deep cracks which make it very painful to walk. I have tried all the topical treatments, plus PUVA which made no difference. I can only wear memory foam trainers and have to cover the soles of my feet with hydrocolloid plasters to help with the pain. No bare feet in the summer. I am thankful I don't have it anywhere else yet apart from a few patches on my knees and elbows. My dermatologist doesn't think that dietary changes will make any difference.

@TeddyIsaHe when I go back to the consultant in April unless I’ve seen a distinct improvement I will ask for something else. Although I know you have to move through the stages to get to biologics coz of cost. I think the next stage will be injecting methotrexate.
@BillyAndTheSillies an injection every 12 weeks and clear skin sounds life changing for me. It would be a miracle.

I’m not convinced diet/skin are linked. I developed cystic acne probably due to my pcos & started a thread in health. I hit the full house of;

Diet
Cows milk (been allergic nearly 15 years)
Chinese medicine
Zinc piclonate

My smoking, drinking, poor diet relatives have good skin.

Methotrexate has worked wonders for DH, one of the lucky ones.

Why on earth have you only just been referred though that's ridiculous!

I can’t believe you’ve only just been referred now! I hope you get some answers.

I have scalp psoriasis and guttate. Light therapy has worked wonders for me.

I’ve also tried elimination diets etc but they haven’t worked for me.

I suggest you Join psoriasis associations in the UK and USA - they have helpful forums.

Best of luck with the specialist.

@lazymum99 I read your post about methotrexate and the tiredness is the reason they decided I'd hit the end of the line with it. I'd take it on a Friday night and be wiped out by the Sunday. That's when they switched me over to biologics.

Started off going in to St Thomas' in London after school three times a week for tropical treatment. Then UVB, then PUVA, then cyclosporine, then methotrexate and now biologics.

Everything else worked for a while, but they are the only thing that have 100% cleared my skin. And I've had no side effects. I know everything is different for everyone but the nurses that visit to do my injections say that the feedback they get from biologics is outstanding.

@BillyAndTheSillies did you ever inject the methotrexate? I see someone at The Royal Free. Have used topical ointments and had UVB a few times which almost cleared it but it came back within a couple of months. It covers too much of my body to use Dovabet all over.

I'm surprised at people saying (a little glibly) that Humira has no side effects. It does. They are rare but can be very serious.
My son is on Humira, he isn't a teenager yet and has been on biologic drugs for some years (gastro condition).
He injects himself every 2 weeks, his bloods are still monitored every 2 weeks. He is supposed to wear factor 50 every day of the year, due to increased skin cancer risk. And as he is young, male and has never had certain illnesses is at an even slightly bigger risk of cancer.
It keeps him well, but all drugs have side effects.
My DSIS has had excellent success from psoriasis with methotrexate.

Sorry I'm confused, you say you've finally been referred to a dermatologist and rheumy and you've tried everything but biologics? Only a dermatologist or rheumy can prescribe the dmards that you have to try first before you can go on to biologics.
Apologies if I've misread or completely missed out reading chunks, but what meds have you already tried and failed?

Have you had light therapy? That was the only thing that worked for me.

@MeetJoeTurquoise that was just me not understanding what the other drugs were called! I assumed they were all lumped in under bios.

Ah ok Op.Hopefully one of the consultants will start you on meds as soon as possible then.
I've been through several dmards, two anti-tnfs and am now on cosentyx which is a different type of biologic and only licenced for Psorias, PsA and AS.