PJ Posted October 16, 2010 Share Posted October 16, 2010 Psoriasis, what’s it all about then? This is a bit of a personal post, but I thought I'd share as I've started a blog all about this and how it's affecting me and how my new treatment is going, this is an extract from there. Well let me start by saying that it’s a complete pain in the arse, a total drain on you, your lifestyle, your confidence, your self esteem, it’s one of the worst things that I have ever encountered in my life, yet it is seemingly ‘harmless’. Now for the science! 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.” It’s a chronic auto-immune 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. 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. Nice eh. Well I’ve been a sufferer since 1995. I had a pretty serious car crash, something that has ended up being a life changing event. In the short term I was gutted about writing off my car and all the hassle that went with it, boy did I not know what was going to hit me from then on. 15 years on it’s still here and boy does it have a vengeance! In all those years since the crash there has been little reprive, it’s been a constant heartbreaking, soul destroying battle. The emmotional strength it has taken to get through this and get on with my life has been something that quite a few can relate to. After years of being poked, prodded, stared at, pointed at, laughed at, there could well be an end in sight. I’ve had numerous treatments, dranks all sorts of lotions and potions, had needles jabbed in every inch of my body, gone through weekly blood tests, taken hardcore drugs like Methotrexate, Ciclosporin, Acitretin to name just a few. All of these had nasty side effects on me and generally made me feel like ****, but they did have the effect of clearing my psoriasis, albeit for only a short amount of time, it always came back with a vengeance. Well, now, finally, I’ve managed to get onto a course of biologic drugs, I’m just about to start on a drug called Adalimumab, more commonly known as Humira. Fingers crossed this will be the start of something special. I get the drugs delivered in the middle of October, I just have a few shots to take first (flu jabs and the like) and a blood test before I get the OK to crack on with these. These, unlike everything else I’ve had so far, have to be injected! I get to inject myself every fortnight, won’t that be fun. I’ll try and document my thoughts and progress on this drug, one that is reportedly a ‘wonder drug’ for psoriasis sufferers. For me only time will tell…. Anyway, this is my blog if anyone is interested, as I know it affects quite a few people. http://paul-jeffrey.com Quote Link to comment Share on other sites More sharing options...
peter richards Posted October 16, 2010 Share Posted October 16, 2010 feel for you mate had eczema when i was younger gone now , but was told it would as i got older , i know its not psoriasis , but still very debilitating and the general public can be very hurtful only if it is ignorance . Quote Link to comment Share on other sites More sharing options...
Rob Posted October 16, 2010 Share Posted October 16, 2010 Someone needs some cream applying by Ms Joanne Whally to sooth their ills. I had really bad eczema all through my childhood right into teenage years and got sick of people saying "Oh its all just nerves" "its all psychological, I hear" which is pretty annoying when you can't move any limbs without skin cracking and weeping fluid everywhere. One girlfriend got the hump because her friend told her she could catch it off me, which was a nice touch. Lo and behold, when I moved out of my parents house, within a few months it had completely cleared up, never to return, so it seemed it was stress related and all that hypoallergenic soap and bedsheets and daily hoovering for dust mites was all irrelevant. As for injecting yourself every fortnight, I inject myself 4 times a day, so ner ner. Quote Link to comment Share on other sites More sharing options...
Attero Posted October 16, 2010 Share Posted October 16, 2010 My girlfriend has (or has had) Psoriasis. Is it a life-long thing if it isn't treated then? You can't see it on her (well not for the year and 4 months I've been with her!) but apparently it can cause people to scratch away their hair. Which is a little demeaning the self esteem. Quote Link to comment Share on other sites More sharing options...
supramkivcork Posted October 16, 2010 Share Posted October 16, 2010 I get a bit of it from time to time actually, find dovabet works wonders on it, not sure how much it costs as the gf's father gets it for me free through some drugs scheme or something.. Quote Link to comment Share on other sites More sharing options...
The-Plethora Posted October 16, 2010 Share Posted October 16, 2010 Good topic, there is a guy at work who sufferred with this for years and years and tried various things to control it but only managed to stabalise it. He eventually got a new girlfriend who clearly spurred him on to get it sorted completely rather than have it flare back up occasionally. He tried a treatment called lightbox I think. I remember it took about 8 weeks or so 2 days a week (I know a massive pain in the arse) sitting in this small chamber in hospital in the buff whilst this lightbox therapy was carried out. Clearly not a personal experience but I have to say it's deffinately done the trick on him, he used to get it on his head, legs and arms. No idea of the costs involved but might be worth a shot if you have exhausted other options. Good luck Peejay. Quote Link to comment Share on other sites More sharing options...
PJ Posted October 16, 2010 Author Share Posted October 16, 2010 Thanks for the comments. I thought I'd post it up as you'd be surprised how many people this affects and how many people are ignorant to it. Yeah, I've done all the light therapy treatments over the years and it gives a brief reprive, but it's only a short term solution and it's not a treatment you can repeat often or stay on for a long time due to the other risks involved. I'm not sure how this is going to be work out, but fingers crossed it will do the business. My skin is so painful at the moment that I've not been to the gym in 4 or 5 months now as I was finding training and the after effects unbearable, splitting skin, weeping sores and the like. I've now piled on the weight as well just to really finish me off. I was supposed to be doing the Great South run next weekend, but I've had to drop out of that as well because of how bad it's been. It's very frustrating to say the least! Quote Link to comment Share on other sites More sharing options...
Graham S Posted October 16, 2010 Share Posted October 16, 2010 Ooh, So it isn't just me! I have the very same thing.. Gotta say you got bit cahooners actually telling everyone. I know exactly how you feel dude. Its so annoying spending my life wearing trousers and mostly long sleeved tops. luckily for me it's not on my face, but get it in my hair which is hard work but i can hide the rest. I've tried many different things but personally i find natural sunlight works best. Recently went to Italy and it made a world of difference. Only pain in the arse (sometimes literally) is our water in the house affects it badly. Think its a really hard water area. Also for cream wise, a thing called coaltar works very well but such a pain having to apply twice a day then not touch anything, plus it really does smell like i've been laying tarmac for days! Would love to know how your results go as would happily bitch at my GP to get me on them! Quote Link to comment Share on other sites More sharing options...
PJ Posted October 16, 2010 Author Share Posted October 16, 2010 When I was first hit I had it all over my face and it was a bloody nightmare. I've got it in my ears (total PITA is an understatement), my scalp is covered, I've got major body coverage going on (circa 60% IIRC). I used to cover up as much of it as I could, but I've given up with that now so always wear short sleeves as a matter of principal these days, screw them, let them stare all that they want. I've stuck some pictures up on my site here http://paul-jeffrey.com/?page_id=11 They're not particularly flattering, but screw it too. I've done all the coaltar stuff, it's horrid, get them to move you on to Dovabet if you've not already tried that, it's pretty good, it's a topical steroid. Also worth getting hold of some tubs of Epiderm, you can use that stuff as soap, in the bath, as a moisturiser, it's pretty good. Light is fantastic for it, see if you can get yourself referred to the PUVA clinic at the hospital, it will clear you up and make everything a lot more managable. To get on to the stuff I'm on now you've got to have gone through all the alternatives that they give you at Dermatology at the hospital. Quote Link to comment Share on other sites More sharing options...
edge Posted October 16, 2010 Share Posted October 16, 2010 I only have this in very minor form but I get this sometimes on my elbows and i tried all sorts of creams then gave up. Went on holiday a couple of years ago and spent alot of time in the sea and it almost cleared up within a year. Done the same again this year when i was away and it's hardly noticeable. My mum has also has this on and off for the last 30 odd years. Hope the needles work bud. Quote Link to comment Share on other sites More sharing options...
supramkivcork Posted October 17, 2010 Share Posted October 17, 2010 wow , checked out those pics dude, feel really bad for you. I can only imagine the pain of it, think I should count my lucky stars I have it very light in comparison to you. I wish ya the best of luck with the medication mate. Regards Mark Quote Link to comment Share on other sites More sharing options...
Bobbeh Posted October 17, 2010 Share Posted October 17, 2010 Yeah, just seen the pics too, it looks nasty and I cant imagine how annoying it must be to live with that. Hope you able to do something about it dude. Quote Link to comment Share on other sites More sharing options...
Graham S Posted October 17, 2010 Share Posted October 17, 2010 When I was first hit I had it all over my face and it was a bloody nightmare. I've got it in my ears (total PITA is an understatement), my scalp is covered, I've got major body coverage going on (circa 60% IIRC). I used to cover up as much of it as I could, but I've given up with that now so always wear short sleeves as a matter of principal these days, screw them, let them stare all that they want. I've stuck some pictures up on my site here http://paul-jeffrey.com/?page_id=11 They're not particularly flattering, but screw it too. I've done all the coaltar stuff, it's horrid, get them to move you on to Dovabet if you've not already tried that, it's pretty good, it's a topical steroid. Also worth getting hold of some tubs of Epiderm, you can use that stuff as soap, in the bath, as a moisturiser, it's pretty good. Light is fantastic for it, see if you can get yourself referred to the PUVA clinic at the hospital, it will clear you up and make everything a lot more managable. To get on to the stuff I'm on now you've got to have gone through all the alternatives that they give you at Dermatology at the hospital. Wow, you do have it ALOT worse than me.. Mine is no-where near that bad and i know how much mine hurts, that must be agony. Really feel for you dude.. I've tried Dovabet and it didn't touch mine but the coaltar stuff seems to work just doesn't quite clear it fully. Nothing seems to do the job like proper sun. Thought about trying sunbeds to see if that would help though. I did some research a while back and there is a place somewhere that you can go and basically sit in the sea for hours. Something to do with the salt in the water that has a massive success rate. Quote Link to comment Share on other sites More sharing options...
Ark Posted October 18, 2010 Share Posted October 18, 2010 ...Something to do with the salt in the water that has a massive success rate. Not sure if it's the same thing but an old colleague's wife had something similar which they struggled with for years. Eventually they went to some spa resort in the med. where sufferers sat in a salt water tank full of these fish which basically eat the crappy skin flakes off you. Sounds pretty gross, but the fish basically eat the infected skin clean off you and you're good to go...completely sorted her problem out. Quote Link to comment Share on other sites More sharing options...
Attero Posted October 18, 2010 Share Posted October 18, 2010 Looking at those pics - wow. I didn't realise how bad it could get. Quote Link to comment Share on other sites More sharing options...
Rob Posted October 18, 2010 Share Posted October 18, 2010 Not sure if it's the same thing but an old colleague's wife had something similar which they struggled with for years. Eventually they went to some spa resort in the med. where sufferers sat in a salt water tank full of these fish which basically eat the crappy skin flakes off you. Sounds pretty gross, but the fish basically eat the infected skin clean off you and you're good to go...completely sorted her problem out. Not a home remedy though is it? Quote Link to comment Share on other sites More sharing options...
Ark Posted October 18, 2010 Share Posted October 18, 2010 Not a home remedy though is it? No, and it wasn't cheap either, but it _did_ fix her problem, so I would say it was worth it. Quote Link to comment Share on other sites More sharing options...
marcAB10 Posted October 18, 2010 Share Posted October 18, 2010 Feel for you bud, i used to work with someone who had bad psoriasis (not to your extent though) and they ended up taking the same view as you, wearing what they like and basically saying f*ck it. i remember my collegue getting the 'lightbox' thereapy, is that the uv light one? like a suntan bed? it worked for them too for a while but as you say, it can only be done infrequently. hope this new treatment works out for you though, Can't begin to imagine what this must be like to live with. Quote Link to comment Share on other sites More sharing options...
PJ Posted October 18, 2010 Author Share Posted October 18, 2010 I have to say that this thread has had a lot more attention/replies than I thought that it would, and I sincerely thank all the well wishers. Some of the comments have made me feel better about what I am doing and make it worthwhile. Not sure if it's the same thing but an old colleague's wife had something similar which they struggled with for years. Eventually they went to some spa resort in the med. where sufferers sat in a salt water tank full of these fish which basically eat the crappy skin flakes off you. Sounds pretty gross, but the fish basically eat the infected skin clean off you and you're good to go...completely sorted her problem out. This is actually something that is just coming to the UK as it goes, something I've been contemplating as have had some slight experience of this. A few years ago I took my son to Lindos for boys holiday, just me and him (he was only 4 at the time so not exactly a raucus affair!). I took him to a little bay just down from the appartment on a daily basis and took him into the sea with a rubber ring, he loved it, though for me just stripping off on a beach was a big thing, he was oblivious to all the sly looks of disgust, the pointing, the giggling and general looks of horror that I was drawing being in only shorts. Confidence knocks FTMFW! My son got right freaked out as all the small fish in the bay would attack my legs and really go at the skin whenever I went in the water. It did clear off a lot of the dead skin but was very painful, but then with the coverage that I have going for a dip in salt water is an intense experience to say the least, you've heard the term 'Rubbing salt in the wounds'. Little did my son know that every minute I spent in the water was excruciating pain, but hey, it was worth it just to see his enjoyment, he loved every minute of it. Anyway, I've updated the blog with some pictures as of today as a pre-treatment snapshot as it were. It's on the front page in case anyone has a morbid fascination in seeing my fat rotting corpse Quote Link to comment Share on other sites More sharing options...
Graham S Posted October 18, 2010 Share Posted October 18, 2010 I have to say that this thread has had a lot more attention/replies than I thought that it would, and I sincerely thank all the well wishers. Some of the comments have made me feel better about what I am doing and make it worthwhile. This is actually something that is just coming to the UK as it goes, something I've been contemplating as have had some slight experience of this. A few years ago I took my son to Lindos for boys holiday, just me and him (he was only 4 at the time so not exactly a raucus affair!). I took him to a little bay just down from the appartment on a daily basis and took him into the sea with a rubber ring, he loved it, though for me just stripping off on a beach was a big thing, he was oblivious to all the sly looks of disgust, the pointing, the giggling and general looks of horror that I was drawing being in only shorts. Confidence knocks FTMFW! My son got right freaked out as all the small fish in the bay would attack my legs and really go at the skin whenever I went in the water. It did clear off a lot of the dead skin but was very painful, but then with the coverage that I have going for a dip in salt water is an intense experience to say the least, you've heard the term 'Rubbing salt in the wounds'. Little did my son know that every minute I spent in the water was excruciating pain, but hey, it was worth it just to see his enjoyment, he loved every minute of it. Anyway, I've updated the blog with some pictures as of today as a pre-treatment snapshot as it were. It's on the front page in case anyone has a morbid fascination in seeing my fat rotting corpse I know how you feel stripping off in public so to speak. Its a illness (if thats what you or I would call it?) that cannot be passed on by touching skin etc but you still get people staying at a distance from you and you can feel the eyes staring at you. I'm forever making excuses to the wife to avoid the beach and things like that. Even down to the neighbour (happens to be on here!) laughing at me for wearing trousers in the hottest of british days (no offence Gav!!). I only wear shorts in the house or garden and if I need to go outside or speak to the neighbours then i'll put trousers and a top on. It really does get to you after a while. But really am hoping it works for you mate, really do. Best of luck. Keep us updated. Quote Link to comment Share on other sites More sharing options...
SupraP-Z Posted October 18, 2010 Share Posted October 18, 2010 Mate, ignore what other people think, so what if they look and stare? thats their problem. The main thing is to be yourself and be confident. I liked the bit where you wrote about wearing short sleeves/shorts, it shows that your capable of ignoring it and not let it bother you so much...whereas normally it would be on your mind constantly and only make things worse. I have a suggestion...it may already be tried...but have you tried any herbal remedies, chinese medicine, or even aryuvedic medicine? i can definately vouch for the aryuvedic stuff, i used to have a constant cough when i was younger...used to take some sort of medicine - few drops in a cup of water for about 2-3weeks and it was completely gone. My girlfriends father also has psoriasis, i will ask what he used to get rid of it (its almost gone now) IIRC he used to bathe in something. I hope this treatment goes well for you mate - all the best Quote Link to comment Share on other sites More sharing options...
PJ Posted October 18, 2010 Author Share Posted October 18, 2010 I have a suggestion...it may already be tried...but have you tried any herbal remedies, chinese medicine, or even aryuvedic medicine? i can definately vouch for the aryuvedic stuff, i used to have a constant cough when i was younger...used to take some sort of medicine - few drops in a cup of water for about 2-3weeks and it was completely gone. I've tried all sorts of things over the years, with varying short term results or no impact at all apart from to lighten the wallet, from daily accupuncture and Chinese teas (no viler substance have I ever come across in all my travels!), light therapy, various and many alternative remedies, oils, mineral baths, tar baths, drugs trials right down to Yoga. After each instance of brief reprieve it has always come back, usually worse than before. Meh, what you going to do eh apart from keep slogging on in the hope that something will help Quote Link to comment Share on other sites More sharing options...
SupraP-Z Posted October 18, 2010 Share Posted October 18, 2010 I will try and find out a bit more about the ayurvedic stuff, you may or may not have tried it...i dont even know what it is to be honest, i just know there is something for this particular ailment. Its worth a try, if you havent already. Will post up as soon as i find out Quote Link to comment Share on other sites More sharing options...
Graham S Posted October 18, 2010 Share Posted October 18, 2010 I will try and find out a bit more about the ayurvedic stuff, you may or may not have tried it...i dont even know what it is to be honest, i just know there is something for this particular ailment. Its worth a try, if you havent already. Will post up as soon as i find out Sounds interesting, not heard of that one myself. Will be interested to find out too! Quote Link to comment Share on other sites More sharing options...
PJ Posted October 18, 2010 Author Share Posted October 18, 2010 Yeah, that's not one I've heard of myself and over the years I've done much digging on the subject. Any further info on that would be much appreciated Quote Link to comment Share on other sites More sharing options...
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