Psoriasis

Always Tired wrote: »

Mine has flared up awful bad, I've been stressed lately and also not eating great, but both of those stem from the fact I'm unemployed. Carbs are the cheapest most filling food. I am going to have to cut them out, though, I am in agony.

Have inverse psoriasis in my groin and the crack of my arse, also my scrotum, all of which is very painful. Plaques all over my back, legs, and arse, a few on top of my hands, my elbows.

Also the perioral dermatitis on my face is back with a vengeance, when I wake up I have a muzzle of flakes that I have to exfoliate and moisturize.

Between that and the baths with dead sea/epsom salts I am taking for the inverse p, and the application of creams I spend the guts of 3 hours per day treating this disease the last few weeks, with only mild improvement.

All my creams and bath stuff were run out and had to be replaced this week. I bought elave pure cream for my PD 7.80 euro which seems good, doesnt irritate but still doesnt cure it, as like P it seems incurable. I am on a long course of antibiotics for it. Bought a soap free bath oil specially formuated for P 12.00 euro, Aveeno 4.75, dead sea salts ×3 (5er for one bath) a big thing of epsom salts 17.50 and refilled my dovonex Rx 2.50

That's just under 60.00 euro. More than I would spend on food in a week. Almost a third of my weekly income.

The worst part is, under the current conditions I wouldnt even be fit for work even if I could get it. But psoriasis isn't classed as a disability, even though it is chronic, incurable and affects my movement, confidence, mental health, and energy level. I always thought I suffered from fatigue, my mother said I was just lazy, but recent studies have found that a very high percentage of P sufferers have low energy, they think it might be due to the immune system malfunctions associated with it.

I actually have a jobpath appointment later today which I find really stressful as on the one hand, they haven't referred me to a single job and I've been on it now 18 months (my 2nd stint). In between that I worked at a restaurant but had to leave due to my P (a customer complained about my elbows to a manager).

But on the other hand I can't see how I can work, and I really don't want to tell this stranger about how I have an inflamed sack, it's none of her business.

All I've been able to manage the last few weeks are to walk my dog and do a weekly shop, because I have to do that even if it hurts just to put clothes on, but other than that all I've been doing is sleeping or sitting on the couch. Even if I was healthy I have no money to do anything anyway after spending so much on psoriasis related stuff.

Sorry for the rant, but I've never felt so low. Doctors are useless. Was on the derm list 3 years, when they finally rang they said I would have to go to Dublin which is 4.5 hours on the bus each way and costs 32 euro. I had a derm appt 8 years ago in Sligo, I had to wait an hour and a half past my appt time each time (it seemed they assume someone young should be seen last), then was made to strip off and sit in the exam room waiting for the doc while this old biddy of a nurse sat across from my staring me up and down (seemed she was very interested in my tattoos). Then at the end of it I was prescribed the same fcuking steroid creams as I was from my GP.

I'm at my wits end.

There is always a way out, it just takes a while to find it.

The first easy step I think you should take is make an appointment with your GP.
There are creams you can get for the ass crack and scrotum on prescription, it’s really painful so you shouldn’t be suffering with it. There are also creams for the face which work a treat.

Also in terms of the arse crack, it helps if you use wet wipes instead of toilet paper because it’s much softer. To be honest I don’t spend too much in creams and washes because I don’t find they work.

Just don’t suffer in silence and I really mean that. Go to your GP and take it from there, I would get back on the waiting list for a Dermatologist. I think 32 euro is a small price to pay to get your life back. Is there any possibility that your mother would be prepared to help you with the cost of seeing someone privately?

dyl2u

Always Tired wrote: »

Mine has flared up awful bad, I've been stressed lately and also not eating great, but both of those stem from the fact I'm unemployed. Carbs are the cheapest most filling food. I am going to have to cut them out, though, I am in agony.

Have inverse psoriasis in my groin and the crack of my arse, also my scrotum, all of which is very painful. Plaques all over my back, legs, and arse, a few on top of my hands, my elbows.

Also the perioral dermatitis on my face is back with a vengeance, when I wake up I have a muzzle of flakes that I have to exfoliate and moisturize.

Between that and the baths with dead sea/epsom salts I am taking for the inverse p, and the application of creams I spend the guts of 3 hours per day treating this disease the last few weeks, with only mild improvement.

All my creams and bath stuff were run out and had to be replaced this week. I bought elave pure cream for my PD 7.80 euro which seems good, doesnt irritate but still doesnt cure it, as like P it seems incurable. I am on a long course of antibiotics for it. Bought a soap free bath oil specially formuated for P 12.00 euro, Aveeno 4.75, dead sea salts ×3 (5er for one bath) a big thing of epsom salts 17.50 and refilled my dovonex Rx 2.50

That's just under 60.00 euro. More than I would spend on food in a week. Almost a third of my weekly income.

The worst part is, under the current conditions I wouldnt even be fit for work even if I could get it. But psoriasis isn't classed as a disability, even though it is chronic, incurable and affects my movement, confidence, mental health, and energy level. I always thought I suffered from fatigue, my mother said I was just lazy, but recent studies have found that a very high percentage of P sufferers have low energy, they think it might be due to the immune system malfunctions associated with it.

I actually have a jobpath appointment later today which I find really stressful as on the one hand, they haven't referred me to a single job and I've been on it now 18 months (my 2nd stint). In between that I worked at a restaurant but had to leave due to my P (a customer complained about my elbows to a manager).

But on the other hand I can't see how I can work, and I really don't want to tell this stranger about how I have an inflamed sack, it's none of her business.

All I've been able to manage the last few weeks are to walk my dog and do a weekly shop, because I have to do that even if it hurts just to put clothes on, but other than that all I've been doing is sleeping or sitting on the couch. Even if I was healthy I have no money to do anything anyway after spending so much on psoriasis related stuff.

Sorry for the rant, but I've never felt so low. Doctors are useless. Was on the derm list 3 years, when they finally rang they said I would have to go to Dublin which is 4.5 hours on the bus each way and costs 32 euro. I had a derm appt 8 years ago in Sligo, I had to wait an hour and a half past my appt time each time (it seemed they assume someone young should be seen last), then was made to strip off and sit in the exam room waiting for the doc while this old biddy of a nurse sat across from my staring me up and down (seemed she was very interested in my tattoos). Then at the end of it I was prescribed the same fcuking steroid creams as I was from my GP.

I'm at my wits end.

Hi, I have dealt with severe plaque psoriasis since I was 7 years old (currently 20) and I know the frustrations you are having (at least to a certain extent) and while I have tried every steroid cream, diet/lifestyle changes nothing ever helped. Until I was 17 years old. I had gone to my dermatologist and he saw just how severe it was and how debilitating it was to my life. He decided to put me onto methotrexate. Of course I had to read the risks with methotrexate given that it is a strong drug but I agreed due to how severe my psoriasis was and I just wanted it off me. After a few months of being on it my skin had cleared completely and it was amazing. Now, 3 years later I've been lowered to 10 mg and i'm still mostly completely clear, with only a bit on my shoulders that comes and goes (but the fact it actually goes away is amazing considering my psoriasis never went away before). I get my bloods done every 3 months and have never had any issues with the medication. If you are truly unable to handle your psoriasis anymore I would recommend asking for it.

Always Tired wrote: »

Mine has flared up awful bad, I've been stressed lately and also not eating great, but both of those stem from the fact I'm unemployed. Carbs are the cheapest most filling food. I am going to have to cut them out, though, I am in agony.

Have inverse psoriasis in my groin and the crack of my arse, also my scrotum, all of which is very painful. Plaques all over my back, legs, and arse, a few on top of my hands, my elbows.

Also the perioral dermatitis on my face is back with a vengeance, when I wake up I have a muzzle of flakes that I have to exfoliate and moisturize.

Between that and the baths with dead sea/epsom salts I am taking for the inverse p, and the application of creams I spend the guts of 3 hours per day treating this disease the last few weeks, with only mild improvement.

All my creams and bath stuff were run out and had to be replaced this week. I bought elave pure cream for my PD 7.80 euro which seems good, doesnt irritate but still doesnt cure it, as like P it seems incurable. I am on a long course of antibiotics for it. Bought a soap free bath oil specially formuated for P 12.00 euro, Aveeno 4.75, dead sea salts ×3 (5er for one bath) a big thing of epsom salts 17.50 and refilled my dovonex Rx 2.50

That's just under 60.00 euro. More than I would spend on food in a week. Almost a third of my weekly income.

The worst part is, under the current conditions I wouldnt even be fit for work even if I could get it. But psoriasis isn't classed as a disability, even though it is chronic, incurable and affects my movement, confidence, mental health, and energy level. I always thought I suffered from fatigue, my mother said I was just lazy, but recent studies have found that a very high percentage of P sufferers have low energy, they think it might be due to the immune system malfunctions associated with it.

I actually have a jobpath appointment later today which I find really stressful as on the one hand, they haven't referred me to a single job and I've been on it now 18 months (my 2nd stint). In between that I worked at a restaurant but had to leave due to my P (a customer complained about my elbows to a manager).

But on the other hand I can't see how I can work, and I really don't want to tell this stranger about how I have an inflamed sack, it's none of her business.

All I've been able to manage the last few weeks are to walk my dog and do a weekly shop, because I have to do that even if it hurts just to put clothes on, but other than that all I've been doing is sleeping or sitting on the couch. Even if I was healthy I have no money to do anything anyway after spending so much on psoriasis related stuff.

Sorry for the rant, but I've never felt so low. Doctors are useless. Was on the derm list 3 years, when they finally rang they said I would have to go to Dublin which is 4.5 hours on the bus each way and costs 32 euro. I had a derm appt 8 years ago in Sligo, I had to wait an hour and a half past my appt time each time (it seemed they assume someone young should be seen last), then was made to strip off and sit in the exam room waiting for the doc while this old biddy of a nurse sat across from my staring me up and down (seemed she was very interested in my tattoos). Then at the end of it I was prescribed the same fcuking steroid creams as I was from my GP.

I'm at my wits end.

do you have a medial card, or a GP visit card?

Get yourself in there and get a referral letter sent to Prof.Brian Kirby in St Vincents private, he'll get your sorted ASAP...and none of this topical crap, he knows what works and what doesn't and considering how much its impacting your life, he'll get you sorted sooner rather than later with the good stuff.

Also, after your inital consultation(which will only take 4-6 weeks privately) your follow up appointments can be put on to the public system so you dont have to pay the fee every time you see him on follow ups!

If you have to beg, borrow or steal to get the inital consultation money, do, it will be the best money you ever spent.

I was in your situation last year, incredibly painful, depressing and just down right torture, now, i'm 100% clear all thanks to Prof.Kirby.

CtrlAltDelete

eeloe wrote: »

do you have a medial card, or a GP visit card?

Get yourself in there and get a referral letter sent to Prof.Brian Kirby in St Vincents private, he'll get your sorted ASAP...and none of this topical crap, he knows what works and what doesn't and considering how much its impacting your life, he'll get you sorted sooner rather than later with the good stuff.

Also, after your inital consultation(which will only take 4-6 weeks privately) your follow up appointments can be put on to the public system so you dont have to pay the fee every time you see him on follow ups!

If you have to beg, borrow or steal to get the inital consultation money, do, it will be the best money you ever spent.

I was in your situation last year, incredibly painful, depressing and just down right torture, now, i'm 100% clear all thanks to Prof.Kirby.

I was reading your post and planning a specific reply.

Eeloe took the words out of my mouth. Dr Kirby is THE best guy in the country to help you. I won't go into the specifics of how much the guy has helped me over the years ( I am in no way connected to him ) but believe me he has.

Get the private consultation fee together, get a referral from your GP to see him in Vincent's private ( I'm almost certain you'll need a referral letter if a new patient ) and from there are Eeloe said you can have your follow up appointments FOC in Vincent's public.

Always Tired

Thanks for the responses guys, I do have a medical card but I only ever get prescribed dovonex or dovobet or aqueous cream, the bath salts that help the inverse P the most and the elave and soap free bath stuff is all out of pocket.

My mother can't help with the cost of going private as she's not working and she's my only living parent.

I have improved slightly it's just the mornings are rough because everything is dry and flaky and sorting my face out takes what seems like a huge effort, and then at night is when I am itchy, and then I can't sleep which is so annoying and affects me the next day.

I am going to try and look into the cost of going privately once I het a few quid together, even if I have to borow the money. I just paid off a loan so even though I would hate to get another one I might have to. In the meantime I am going to try some meditation and exercise to ease my stress, I can't run but I can do some upper body stuff and rowing machine for cardio to get some endorrphins flowing as I know that the stress and low moods is a big factor. Kind of a funny and interesting thing, about 10 years ago I was into raves and used to take a drug that basically gives you a huge release of serotonin, I didn't eat much, drank lots of water, didn't drink alcohol (which I still dont)and danced a lot. I lost a stone and my psoriasis completely disappeared. But that's not a solution obviously and I stopped as that drug can damage your brain long term, but it was just a curious phenomenon. Hopefully by keeping the healthy part of that time, the diet and exercise and drinking water I can heal. But giving up pizza is hard, the 2 euro flatbread ones from Aldi are so good! And the tricky thing with fruit and veg is it goes off so quick and just isn't as filling.

But thanks very much again and I will look up that doctor. I just needed to rant a bit, I try not to complain to my family as I don't want to bum them out and theyve heard it for years and sometimes it just feels so unfair and isolating you want to scream.

At least that you have a medical card you won’t get charged €60 to get your referral letter sent.

Look, i’m so confident that Kirby can sort you, i’m willing to throw in a score towards your consultation. If a few others were up to it we could get your referral sorted!

Dubl07

Always Tired wrote: »

And the tricky thing with fruit and veg is it goes off so quick and just isn't as filling.

But thanks very much again and I will look up that doctor. I just needed to rant a bit, I try not to complain to my family as I don't want to bum them out and theyve heard it for years and sometimes it just feels so unfair and isolating you want to scream.

The amount of energy for all the crazy cell division that's taking place in your largest organ is huge. Protein is essential, at least that's what I was told by Prof Kirby's predecessor.

Are you taking Vitamin D3 and K2 supplements? They may help as well.

And I'd also pitch in a few euro if you're stuck, but alternatively, send a letter to the public dermatology unit and ask to see a nurse practitioner to look at your skin. Bring a letter from your doctor, a plea from yourself and as many printed photos of your skin as you can. The doctors and nurses are very understanding and know that it's important to treat as early as possible to avoid damage to your heart and other organs, not just your skin.

Severe P is becoming recognised as a serious illness, not just a cosmetic issue, but some GPs are still unaware of its gravity.

[Deleted User]

Wondering if there are any good cream or ointment suggestions for a small dots on my face/forehead but also scalp and hairline particularly hairline for my face I can hid some of it with my hair but the corner is flaring up down past the point I can cover with my hair by pushing my hair to that side. Also would really appreciate any diet, vitamins or general recommendations. Thanks!

ChrisJ84

Chacha97 wrote: »

Wondering if there are any good cream or ointment suggestions for a small dots on my face/forehead but also scalp and hairline particularly hairline for my face I can hid some of it with my hair but the corner is flaring up down past the point I can cover with my hair by pushing my hair to that side. Also would really appreciate any diet, vitamins or general recommendations. Thanks!

GP should be able to recommend a hydrocortisone or mild steroid cream for your face - I've found a combination of those to be pretty effective in clearing it up hen it starts to break out there.

Stress / over-tiredness / being run down seems to be the big trigger for me, I've not found anything dietary to make much of a difference. Tackling it early is the key, before it gets too out of hand.

All the best with finding something that works for you, it can be a frustrating process!

BohsCeltic

Chacha97 wrote: »

Wondering if there are any good cream or ointment suggestions for a small dots on my face/forehead but also scalp and hairline particularly hairline for my face I can hid some of it with my hair but the corner is flaring up down past the point I can cover with my hair by pushing my hair to that side. Also would really appreciate any diet, vitamins or general recommendations. Thanks!

For my hairline/forehead i use Nizoral cream. It worked. Because i also have dermatitis it's sometimes hard to figure out what to use as i am not sure if it's psoriasis or dermatitis because they can appear the same.

Just trial and error really, My face got real bad but cleared up after about 5 day's. I won't lie but it was still a bit red and i had a wedding to go to and had to use make up to cover it (I'm a man) but thankfully it's under control now.

I use salicylic acid face wash that seems to keep me clear without having to use a steroid cream like cortizone.

Moo Goo do a goo range of products too. I have found them good

khalessi wrote: »

Moo Goo do a goo range of products too. I have found them good

They might be good but they are a shocking price. I can’t bring myself to pay it

Im the same tbh

I alternate between dead sea magic and seaweed baths, Aveeno, Moo Goo and cocois tea tree and coconut products. As I find that my skin gets used to something and after a while it isn't as effective so I need to take a break from it. Generally I end up getting Moo goo as a gift due to the price.

So I’m off the methotrexate and will be on cimzia once my tb test comes back clear

Grace Thoughtless Mortal wrote: »

So I’m off the methotrexate and will be on cimzia once my tb test comes back clear

Excellent stuff!!

Hopefully this will get you fully clear without any nasty side effects!

just wondering if you go on methatrexate or the non biologicals, are you on them for good

khalessi wrote: »

just wondering if you go on methatrexate or the non biologicals, are you on them for good

As far as i’ve seen, they appear to be life long medications until something else comes along.

After a year of being on stelara it’s no big deal, a shot every 3 months.

DO you give that yourself or from gp

khalessi wrote: »

just wondering if you go on methatrexate or the non biologicals, are you on them for good

I was on 25mg methotrexate until today since last July.

Biologics are generally a last resort treatment so there usually is no going back. But I don’t want to anyway. I tried countless things over 10 years before going on them.
I have been trained to inject myself

makeorbrake

Gael23 wrote: »

Biologics are generally a last resort treatment so there usually is no going back. But I don’t want to anyway. I tried countless things over 10 years before going on them.
I have been trained to inject myself

Are you saying there are certain downsides to biologics?

makeorbrake wrote: »

Are you saying there are certain downsides to biologics?

There are downsides to every medication you take. There are certain risks with biologics but to me it’s a case of risk v benefit. They have given me my life back really so I’ll put up with a few negatives

dyl2u

khalessi wrote: »

just wondering if you go on methatrexate or the non biologicals, are you on them for good

Yeah you pretty much are on them long term until something better is made, been on methotrexate for 3 years and haven’t had any side effects.

makeorbrake

Gael23 wrote: »

There are downsides to every medication you take. There are certain risks with biologics but to me it’s a case of risk v benefit. They have given me my life back really so I’ll put up with a few negatives

Of course there are always downsides to all meds. I'm just wondering what they are in the main with Biologics?

I was offered methatrexate or biologics years ago but side effects put me off as I wanted children and have them now. So now I dont know, I hoping to get TL1 light treatment and that will sort it for a while but then I wonder should I take medical approach or just go along with my present head in the sand approach of it is just dry skin despite being a scaly creature at the moment

khalessi wrote: »

I was offered methatrexate or biologics years ago but side effects put me off as I wanted children and have them now. So now I dont know, I hoping to get TL1 light treatment and that will sort it for a while but then I wonder should I take medical approach or just go along with my present head in the sand approach of it is just dry skin despite being a scaly creature at the moment

The one I am going on can be used in pregnancy and is safe as the proteins are too small to pass through the placenta. Main reason I’m on it as I’m 30.

makeorbrake wrote: »

Of course there are always downsides to all meds. I'm just wondering what they are in the main with Biologics?

I haven’t started my new one however they gave me a card to carry at all times and it basically just appears to be more prone to infection

https://ibb.co/dfJWdFC
https://ibb.co/dDFjQkM