The Knowledge Board:
Psoriasis
Hi I'm Belinda, I'm your community manager. If you would like to leave a comment please click on link at the bottom of the page.
You can reach me at belinda.shale@healthcarelandscape.com. If you have not done so why not join The Patients Voice by clicked on the Join TPV tab on the navigation bar above.
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These Keywords are in use on this dicussion: psoriasis, puva treatment, puva therapy, Fucibet cream, Fucibet, biological, anti-tnf |
Psoriasis is a common skin condition affecting 2-3% of the population of the United Kingdom. Psoriasis can occur at any point in one’s life, affecting children, teenagers, adults and older people alike.
Psoriasis can impact many different aspects of people's lives - it is not only coping with the treatment that can be difficult but also coping with other people's reactions to the skin changes.
The Patients Voice and Healthcare Landscape would like to get a better understanding of how you feel your condition has affected your lifestyle and the effect of treatments above and beyond the purely medical. We are interested in how the people around you (friends, family and colleagues) reacted to the changes and what kind of support you received.
In particular we are interested in the following questions:-
Thanks very much in advance for your help.
Remember, a blog is really like having a conversation with lots of people at the same time so please check back on the blog to see what others have said so that if you feel like adding to their thoughts you can. It's a conversation and a chance to learn and share!
We look forward to reading your comments and, of course, thank you very much for your input.
Pinot N | 15/05/2008 16:04:00
Hi Having psoriasis has been and is a nightmare - My GP is lovely and sympathetic treatment wise, but whe I tell her that people keep staring at me and laughing at me in the street because of the psoriasis on myface and hands, she tells me to get on with it and ignore everyone. I am 25 years old, and have never been on a date because this has made me so ugly - I feel totally depressed and feel my life is non-existent - all I am good for is staying at home never to be seen by anyone - Help!!!!
rosemary54 | 15/05/2008 16:22:00
Hi, I am 53 and have had psoriasis since I was 15,it can make your life a misery and i do sympathize and hope you meet someone who will love you for what is inside.you are not ugly so please do try and get out.I used to feel very self concious and kept covered up but eventually I began to ignore it and not let it spoil my life.The more you can accept yourself and relax the better you will feel.It is not always a permanent condition and does vary in severity through life.I now have opther problems which I feel are far worse than psoriasis!healthwise.Get out tin the sun ,I find that is a great help and ask your GP about PUVA treatment, .IT does work for a while but be warned it can come back.dont give up trying to find a treatment that suits you.Ignore thoses who laugh at you they are not worth knowing and you should pity their ignorance!good luck
Penny | 15/05/2008 16:23:00
I started breaking out with patches of dry, crusty skin two years ago. I was 44 then . My doctor says,"that's just a little psoriasis," and gave me a prescription for Triamcinolone Acetonide cream USP 0.025 %.
Phil | 15/05/2008 16:29:00
Hi, i have had psoriasis since the age of 4, i'm now 51. I feel it's ruined my life. Over the years peoples initial reaction to seeing psoriasis is one of shock. But i must say i've not had that bad a reaction off people once they understand what it is, even at school. Even so, i have given up on any medical solution as the ointment and creams have little or no effect, in fact my skin has gone paper thin in places due to steroid creams and tears easily. In fact over the years i've been plastered all over my body in these greasy horrible creams and indeed its almost as bad as the original complaint. I will never get married or have kids because i dont want the hassle of rejection and also i wouldn't want to inflict this condition on any kids i would have. I have really given up on any solution/cure to this problem as medical science seem to ignore psoriasis sufferers. Maybe if these treatments where in a gel form, easily absorbed by the skin quickly and didnt smell like on old coal sack.
stibs | 15/05/2008 16:47:00
The questions posed in the invitation to join this blog were interesting ones. It took about 2 years for a doctor (and I saw lots) to tell me that I had psoriasis - I was treated for ring worm (lots of different medicines and potions, none of which worked) excema, infected excema, and then various creams were prescribed which did not seem to have any particular purpose and certainly had no effect! I was diagnosed at about 30, while I was under a great deal of stress, but it took another 11 years before I was referred to a specialist who recommended dithrocream - a messy, antisocial and time consuming treatment, but it works pretty well for me. None of the doctors I have ever seen has ever asked about the emotional aspect of the condition. I have had two children since I was diagnosed and each time I became pregnant the psoriasis completely disappeared and did not come back for about a year after each baby was born. I used to have it very badly on my hands, which I found very embarassing but it never came back there after becoming pregnant with my first child. I am now getting it on the soles of my feet, which is not very nice. Most people I meet are quite polite about it, children ask direct questions and are quite curious, some dogs are fascinated and desperate to lick the scaly patches (yuk!). My mother said what a shame it was that I would never be able to wear shorts again (I wear them regularly, weather permitting) and my mother in law buys me tea tree oil products for my birthday and christmas every year, for my "infection"! My father has always had it on his ankles and knees, so I suppose I have always been used to seeing it on him, and it has not affected me emotionally too much, except for when it was on my hands - I hated that.I would be interested in hearing how people treat psoriasis on the bottom of their feet (mine is not bad yet, but is slowly developing), and whether anyone has been to the Dead Sea for one of the therapies on offer there - the thought of two months in the sun and the sea sounds like a rather nice treatment!
Louise French | 15/05/2008 16:53:00
Hi, I'm Louise. I am now 28 and have had Psoriasis since the age of 7. At the age of 9 I developed the associated Psoriatic Arthritis (PA) which progressively worstened over the years until at the age of 21 and 22 I had to have my left and right hips replaced respectively.At its worse, my Psoriasis covered about 80% of my body. I obviously have an extreme case of the disease so hopefully most people reading this wont have to experience what I did but I can honestly say that having a skin condition like Psoriasis is actually worse than having the disabling symptoms of arthritis.I tried not to let the staring strangers bother me, but it did! Try and ignore them as best you can and don't feel that you have to cover up - there opinion does not matter really and if you are honest with yourself, you would do the same in their shoes. Frineds and family were always understanding, however, my best friend, without realising it bothered me, would always introduce me to new people as her friend who has Psoriasis which always made for an awkward start to a conversation.Puva treatment does work very well and if you have a severe enough case is worth discussing with your dermatologist. As an extra bonus, you get a fantastic tan and your confidence will soar.I am now self injecting a biological medicine called anti-tnf. You have to jump through a lot of hoops to get it and it has only recently been lisenced for Psoriasis. I was able to have it prescribed 5 years ago for the treatment of arthritis as I have always been a query Rheumatoid Arthritis (RA) sufferer and so got it when it was only lisenced for RA. You can only get it if you have tried two other disease modifying drugs such as Methotrexate or Sulphasalazine without success. I now have NO symptoms of Psoriasis and the symptoms of PA have been reduced so much that I often forget I even have the condition.Keep perservering with different treatments as eventually you will find the one that suits you!
Louise French | 15/05/2008 16:59:00
Phil - it is only a skin complaint, you are not a mutant. The fact you feel you will not get married is not because of your Psoriasis but because of how you feel about it. My mother has Psoriasis and I was the only one of three to develop the condition - should she have had me aborted? I suggest you speak to your dermatologist about trying treatments other than ointments and creams as they are obviously not working. You may want to speak to a councillor about how you feel - you need to get over yourself! 3% of the population suffer from the condition and while I understand it is unpleasant it is not life threatening and you are not the only person affected by it!Sorry for my harsh opinion, but I and many other people managed to live with it without it ruining our lives, why can't you?Good luck with seeking the best treatment for your Psoriasis - there is one out there, just keep perservering!
Alan Bailey | 15/05/2008 18:55:00
Mine developed in 1981 from a patch on my leg the size of an old sixpence. It comes and goes, sometimes is very itchy, other times is thick and scaly. After trying dithrinol and various steroid ointments I found PUVA therapy to be the most effective for periods of 4-6 months. Now my consultant has agreed to try me on ciclosporin capsules for 6 weeks - at least I can still have alcohol. I hope this works because I am fed up with leaving a trail of white skin flakes everywhere I walk or sit, not to mention the almost irresistible urge to scratch.My psoriasis is probably hereditary but it didn't manifest itself until I was 38, I'm glad Iwas OK during my youth.
John H | 15/05/2008 19:05:00
I got psoriasis when I as about 19. It started off with just a couple patches here and there. When I was about 22 I woke up one morning and I was covered from head to toe with it. It was very bad, I didn't leave my house, I quit my job, I let it take over my life. A couple weeks later about 50% of it went away. I been to several doctors who told me there wasn't much that could be done. I do use a cream on my face that my mom gave me to try and it works to get rid of them, but the doctors won't give me a percription for it. I dont ever wear short sleeve shirts until I can get some sun in the summer time that gets rid of it on my arms. I'm 33 now and probably shouldn't let it dictate how I live my life but I do and I'm sure it's because of how people looked at me for the last 14 years.
Dee | 15/05/2008 19:16:00
Hi all, I was 5trs old when diagnosed. I am now 33yrs. My life has been full of ups but more downs. It is extremely hard to have a life due to alot of ignorance from other people. I have learnt as I have got older that what other people think doesn't really matter. It hurts, and is really hard to ignore sometimes, but then if I stoop to their level, then I am worse than them. I have two beautiful children and a partner thati adore and adores me. It is possible to find someone, but it takes time. It also takes a very special kind of person to put up with all the stress that they will get from us. I am currently on Methotrexate and in 8 wks I am more than 50% clear and am so happy. People still look as i still have some left at the moment but I just have to remember that I am a better person thatn them. This is because unlike them we are not ignorant sods.To all of you, my life has always been one long fight, and I have many a time nearly not lived. This has taught me to not give a damn about anyone but me. Stress only makes it worse. I always ask if they would like a photo as it will last longer, then smile for them. They are so shocked they don't like it.Keep your chin up and life will prevail at some stage. xoxox
Sian_Raven | 15/05/2008 20:13:00
I have been suffering from Psoriasis for the last 10 years and it got to the point where I ended up with bandaged legs and feet and lost a lot of hair on my scalp. Getting stressed at work doesn't help it and neither do comments from people who thin that it'll be healed if you use a steroid cream for a week.I know a few people who suffer from deafness and arthritis caused by their Psoriasis and I don't know how they cope.
Belinda | 15/05/2008 20:59:00
I first had symptoms of psoriasis when is was 17 at around easter time, so winter had just passed. I went to my GP at the time who just brushed it off and said that i had echzema, however my house parent in boarding school said it was psoriasis as he suffers from it as well. I felt that my first GP was a bit useless and he just gave me some steroid cremes which initially helped, however when i stopped using them, i would get a rebound.Now this has been a common thing with me, and i have had cases where my rebound has been much worse than what i originally had. I visited several GPs over the year and they all just gave me some cortisone creams, steroid creams, coal tar, vitamin D-analogue.. you know the lot. And it still hasn't really helped.. and they didnt seem to know much about it.. just consulted their computers based on my symptoms. So when i was 18, in the winter i went to a herbal dermatologist in Dubai (as my parents live there) and i was put on a detox (no alcohol, fizzy drinks, processed foods) and i had to drink aloe vera juice twice a day, drink fish oil, eat a lot of fish and vegetables and apply aloe vera gel and a thick moisturising lotion everyday. I did this for about 4 months and most of my severe red psoriasis had subsided but it just came to a pit stop with it not getting any better. So i went back to a dermatologist and got some more creams as i was going to america to work in a summer camp. I really did not want to show up looking like id just been splashed with hot oil! I hate using the steroids but it was my last resort. So throughout the summer, most of my psoriasis was gone but it still remained on my problem areas (legs). When i got back i decided i wanted to try natural remedies as i was fedup with modern medicine. I opted for accupuncture with accupressure. I had to drink chinese herbal teas (horrid tasting things that looked as if it was scooped up from a forest), i couldn't drink alcohol, eat read meat, eat food cooked in the oven or in the microwave, spicy food, shell fish, dairy, coffee, chocolate.. so pretty much all the nice things in life that a 19 year old girl shouldnt have to give up. It was very hard to give up all these things, especially in my freshers week where i remained sober. I kept this up for 7 months. 70% of my psoriasis went in the first 3 months, but my problem areas still remained (legs- knees and above the ankle area, around the eyes, ears, elbows). So 4 months later with no changes i decided to stop as i was paying a bomb (probably came to over £1500- not cheap for a student ). I went back to Dubai to see my parents, spent 3 days in the sea, got a lot of sun, applied fresh aloe vera to my skin, used vitamine E oil on my affected areas and my skin slightly cleared up. I then went to see a dermatologist that was reccomended to me and she put me on 3 courses of medication.Week 1: Dermovate ointment twice a day Week 2: Dermovate once a day and daivonex ointment once a day Week 3: Daivonex twice a day until it all goesI ran out of daivonex after 3 weeks so am now using daivonex creme instead of the ointment (less strong). Most of it has gone, a few bits and bobs are coming back, but not much. So far this is the best remedy i have had. I am trying not to get stressed about it as the doctor said it is purely stress related (not affected by food or drink). Its kind of hard because i am a uni student in a fast paced bustling city. I try to remain calm, but stress is in my nature. But the less i care about how i look or how other people think about me, the more relax i feel about myself. Now i am going out in skirts ajnd shorts.. sure people looking at my legs, but so what... i need the sunlight =) !When i get back from working at my summer camp this summer, if my psoriasis has not gotten much better, i will probably try and get PUVA therapy... if that doesn't help.. then next stop, dead sea skin therapy in Jordan! I am only 20 and i have only had it for 3 years. Some of you have had it for decades and are role models for me to look up to. Its great how you have learned to deal with it. I am still in the process. I know it can be a bit rubbish, but the less we think about it, the less we are affected by it. As someone has said earlier, we cant let it rule our lives. Just stay healthy, keep your immune system stress free and your mind stress free and it should get better.. i should really practice what i preach though! Good luck everybody!
Kate | 16/05/2008 00:49:00
I have been suffering with Psoriasis since I was 12. I started getting patches on my arms. I am now going on 19 and it has spread to my scalp, legs, and neck. I have seen several doctors about it who keep giving me different kinds of creams. I have been asked lots of question about it and when asked I answer to the best I can.I can tell anyone who is living with psoriasis that there is someone out there that will love you even if you have psoriasis. I have been lucky to find a wonderful man who cares for me and doesnt care if I have it.
Phil | 16/05/2008 02:24:00
Hi Louise, in response to your post above! we where asked how it affected our lives. I said/stated honestly how i feel. Of course i dont think babies should be aborted because of psoriasis!! I like most/all people who have psoriasis where not born with this disorder, but later inherited through genes from my family. Afterall its an auto-immune genetic disorder. I dont decry any person who has it, Geezz i've had it for 49 years so i am the last person to judge anyone!. But as i stated above i probably had it more severely than most, on and i mean every part of my body and as such my outlook on my life is as stated above. BUT i enjoy my life albeit single with lots of friends. Psoriasis can effect most people. I have reached the age of 51 with psoriasis so to anyone out there who maybe just been diagnosed with it, or indeed had it for years ( btw lots off people it goes away after a short period ) this blog may seem depressing but as life is for living and contrary to what Louise says ! i got over myself years ago and accepted what i been dealt in life and go out and enjoy myself lol.
Kaimeep | 16/05/2008 09:26:00
I'm a 21 year old student, contracted strep throat in my first year of University and following a massive period of stress where I broke up with my boyfriend and lost a couple of friends, and my mum went into hospital, I broke out in psorasis.I have guttate, so I'm thankful that it isn't plaque and more important, originally it was on my wrists, my back and sides and my feet, but since last summer it seems to have restricted itself to my feet.It is unbearably itchy and due to the fact that my feet are usually wrapped up in shoes all day, I'm often scratching myself raw. My doctor picked up on it after the second visit after being diagnosed with excema.She never told me that it was a life-long condition though, this was something I discovered after I looked it up online and I was quite gutted. Creams do nothing, just make me feel very uncomfortable so I have just been ignoring it and scratching it when it gets unbearable. It's just too much effort for not enough gain. I try to sunbathe and get UV light on it, but it doesn't work. Thankfully my boyfriend met me when it was at its worst, so he doesn't mind that it's only on the tops of my feet and ankles, and even gives me footrubs. My friends are also forced to get used to it - one of them jokingly touched it the other day, hooray!I did some martial arts for a while, barefoot, and people did certainly wonder what the hell it is. I'm not ashamed of it, but I will never wear high heels or pretty flat shoes again. I just don't want to showcase how flaky and ugly it is. I'm just lucky it's not as bad as it could have been, I guess.
Neil | 16/05/2008 10:51:00
I have had psoriasis since i was 22. I am 36 now. I was undertaking a PhD research degree in organic chemistry when I was first noticed the itchy, flaky red areas of skin. I assumed it was due to the chemicals that i was working with, even though i had been correctly diagnosed by a very good doctor. I left the degree course and when my skin did not clear up I got quite depressed. I spent 2 weeks in the dermatology ward of the Queens medical centre in Nottingham where I was on a regeme of emolients, coal tar applications and steroid cremes which helped the psoriasis, but I guess at that time I didn't really understand that there wasn't a cure for the condition - so when i left the ward the psoriasis came back.I was convinced people would freak out if they saw my skin, so i kept covered up. Luckily I didn't get patches on my face very often (in fact I've only had this three times i think). I stopped going out with girls. I didn't even try.I was able to work out in my own mind that this is a part of me now, and try not to let it affect my life. I guess it took 3 or 4 years. I am less self concious about it that I was (I wear T shirts when its hot now which I never did in my 20's) and you know what? The vast majority of people don't even bat an eyelid. I realised that, while some girls do have an issue with it, more than i thought do not. I met an married a wonderful girl and now have 2 kids. I do sometimes worry that I'll pass on the psoriasis to them but I suppose in the back of my mind i'm convinced they'll have found a cure by the time my kids reach adulthood.I think the major battle for people with psoriasis happens in their own head. If you can win that one, the physical aspects pale significantly - even though they're always there.Top tips for treatment - emolients in the bath (E45 is my current favorite), and dovonex cream. I find I can fit the treatment into my life without too much hassle and it does reduce the itchyness considerably. I find stredoid ointments are the only thing that works on my scalp.
Elaine | 16/05/2008 11:05:00
I developed psoriasis when I was 17 and I supposed I was quite lucky not to have gone through the school years with the problem. Over the years I have had various treatments from coal tar to steroid creams, PUVA treatment, seen specialists, etc. and at one stage was even being used as a guinea pig for new treatments. Nothing seemed to work, particularly the PUVA treatment which seemed to make things worse. I was then diagnosed with the type of psoriasis that has an adverse reaction to the sun - mine improves in winter. I have suffered, like many other people, with the ignorance of other people who seem to think that you're a 'side show' at a circus but as I've got older actually feel sorry for these people. About 5 years ago I needed to change my diet for medical reasons and can no longer eat any dairy products - the result has been absolutely amazing. Although I still get minor outbreaks on my face, the remainder of my body is totally clear. I'm not sure if this is a coincidence or not but I have to say that I am the happiest I have ever been. I'm treated like a 'normal' person and don't have to live with stigma of having a skin problem. I use Elocon cream on my face when I get the outbreak and within 2 days it has gone. I suppose I'm one of the lucky ones (I'm now 46) but it may be worth other people trying to cut out dairy products altogether and seeing if it makes a difference.
Barry | 16/05/2008 11:30:00
The questions asked as someone else has said are interesting ones. I am not a major sufferer, I am aware of my condition I was diagnosed approx 3 yrs ago when i felt very ill and assumed I was suffering from a bad case of Flu at 51 yrs of age. The Dr who attended me at Home rushed me into Hospital at it turmed out I had had two Blood clots and my Immune system had closed down. I was told I was 24 hrs away from going into a Coma and dying. After 5 hrs of Initial Treatment they finally looked at my Leg which I was also refferred into Hospital for as it was sunburnt or seemed to be. Lo and behold there was a Blister on my ankle the size of a half inflated Balloon. Your in the right place for that I was told. oooerr 3 days later when they removed the bandages from that leg as I was leaking fluid all over the Hospital - even accused of wetting myself, they found there were blisters on blisters on blisters all the way up my leg from toes to above my knees, all around my leg. Even Nurses refused to change bandages after that as MSRA was discussed. 3 weeks of being bedridden and No change of clothes or shaving gear I was at last allowed home. Out patients finally told me I would be suffering from Psoriasis for the rest of my life on that leg. I was given some cream. I then had one out patient visit and told that was it, I was now on my own and I had to suffer from it, flaky skin, red-dark purple colouring when my leg gets hot etc,etc. A few months ago I had a further accident to that leg and sliced it open all the way up the back -- the Dr told me as (Fortunately it looked worse than it turned out to be) that there was no way she wanted to even look at that leg or even attempt to stitch it due to the Psoriasis. I know I only have it very mildly compared to other sufferers who due to my mild symptoms I now have great sympathy for.Thus after all this -- what advice from Drs on what to do or how treat it -------- Nothing, basically down to me to live with it and treat it myself, so what happens when and if I go swimming -- Your not allowed into the pool anymore. I therefore appreciate and feel for sufferers worse than me....................Oh yes the cause of the Psoriasis was -- I had Athletes foot, and nicked my skin when cutting my toe nails and thus passing the AF into my blood stream and ending up with my leg the way it is. Thats the specilists excuse any way
JaneO | 16/05/2008 15:54:00
I was diagnosed with psoriasis eventually when I was 7. I had had it from the age of 5 but the doctor said it was an allergy to chalk dust. It left me for a while from the age of 18 to 20 but then it came back with a vengeance. I now have had Psoriatic Arthropathy for about 20 years and this is really painful. I am on a cocktail of drugs - Nabumetone, Methotrexate, Neoral and pain killers. Without the tablets I cannot walk or move so they work. I am not borderline anti-TNF so my specialist is monitoring this situation carefully as they are very expensive. My doctor and specialist are brilliant. Sunshine is the best thing in the world and I just can't get enough of it. Even now since we have had sunshine my psoriasis has improved substantially but it will soon be back!
sara | 16/05/2008 16:25:00
i am a positive person and optimistic and i know there are worst conditions but having visable p is a chore- i have it on my hands knees legs elbows in big plaques but lots of little patches whenever i cut myself, my skin heals into p so aggrovating!! P is in my family my dada and granma have it v mild and it skips a generation on my mums side so my gran had it but only on her feet. My p came out when i was seven n shattered my coxix (ouch) it was just a small patch at first and then when i was 18 i had my appendix out n cathaters in my hands since then it went mad n spread like wild fire- came back from the dermo yeaterday n feel rubbish- its methotrexate or the others- side effects are scary as so dont want to do that but having narrowband uvb- will be ages before i get there but we will see how it goes eh!! Treatments are either too scary or too weak n my gp seems unsymapathetic and so is the dermo- im not someone to feels sorry for myself just think people could do with more education on this so we get less stares and stupid comments about being contageous!!
Ionium | 16/05/2008 17:03:00
Never had a really bad outbreak til I was about 18 and I worked in menswear. It was embarrassing and emotionally painful to go to work every day as the patch's were just about everywhere on my body. This last about a month and I have to say it really dinted my confidence work wise and with the fairer sex, even though I did manage to pull some pretty blonde while "suffering". Shame she thought they were cigarette burns :-sOther than that its not a real big issue I get it on my nipples and elbows mostly and sometimes my scalp. Too much stress brings on an outbreak otherwise I manage it with no particular thought to it, have noticed my healing rate is faster than the norm don't know if the condition and that are related.
Rosie | 16/05/2008 17:29:00
I'm 26, diagnosed with P when I was 15/16. I had it when I moved from USA to Europe, I guess it was the stress and strep throat!! I have guttate psoriasis.At first I was always feeling down, I hated seeing my body and no one in my family had it. The thruth is everyone around me took it very well, yeah some people thought it was gross but oh well. I had many treatments, different creams and oitments, my P would get better sometimes but after a while I would flare up, I remember crying my self to sleep and thinking I would never be normal. I had a boyfriend for 5yrs and he accepted it after we broke up, big flare up:( but I met the man of my life and we're now married and doesn't mind seeing my big spots of P!!! Here in the USA we don't have health insurance so I always have my mom send me creams and stuff from Europe! Good luck to everyone, and someday they'll find a cure, I'm sure!!!
CH | 16/05/2008 21:32:00
I got psoriasis when I was a child but the doctor said the sores were due to the cold weather. I suffered for years with agonising open sores as the doctors were considered to be always right. Later on in life I got what I thought was bad dandruff and no matter what I used it never got better until I saw a new doctor who knew what it was. In the last 10 years it has broken out on my feet but now I have a different doctor he swears its because I wear trainers (I don't?), even a nurse at the hospital said the same? My hands are better now but have always looked like the hands of an elderly lady and people often remarked about them, making me quite self conscious. I suppose it will erupt somewhere else later on but I just try and get on with it.
hd | 17/05/2008 13:39:00
judging by some of the comments I've read, I'm quite lucky. I do have constantly flaky knees, and at one point people kept asking me had I fallen over...did they think I was clumsy or permanently drunk? I also have a really itchy patch on my back under my bra strap which drives me crazy. My scalp leaves showers of white dust whenever I touch it (wearing black is something you have to think about twice) and my buttocks are so patchy that I look loke a cheetah only not so sleek!The creams do work, but are like chip fat, so even if you could reach all those hard to reach places to apply it, you would need to live in a nudist colony, or wear thick cotton pyjamas to absorb the grease. I've had ultra violet light treatment which works fantastically and gives you a good tan, but carries a risk of skin cancer, so is only given sparingly.I have a partner who is used to seeing me hoover the bedshhets every so often, and 2 lovely kids, so I shouldn't complain. It just does sometimes make me feel less feminine than I could, and makes me think twice about wearing some lovely sleeveless dresses or t shirts.
kev | 17/05/2008 19:48:00
Having had depression for a number of years took psoriasis about 6 years ago. For me it has been a personal nightmare as it mainly affects my scalp, face, ears and chest. It has had a greater effect on me than the depression as you cannot hide the psoriasis away. It really has affected my confidence and of course my looks. I have been told that it may have been brought on by the medication I am on for depression. I have tried so many creams and oinments that I cannot count. The best one so far seems to be Dovonex Ointment, it contols the redness best, but like most of the oinments can only be taken for so long. I have also tried light treatment, which was not successful, followed by Puva treatment which gave me relief for about 3 months. The greatest problem is getting help. My doctors were sympathetic and referred me to a consultant who really only kept giving me more treatments but NEVER really listened to what I had to say, she really did not feel sympathetic at all. I so long for better and more sympathetic help, treatment and long term solutions. It has so damaged and ruined my skin and has made life so horrible for me.
Christine | 18/05/2008 15:36:00
Kev I sympathise with you, I have psoriasis in my head too. I first was diagnosed with psoriasis when I was 19 on my arms and legs. The docotrs put it down to stress as my husband was in the army and serving in Ireland however it remained with me ofr abut 5 years after which it disappeared. About a year(I am now 51) it re-appeared in my head. MY GP who is great has tried me on all different ointments and shampoos including Devonex but it seems to be spreading. I find that people stare when I start scratching my head wondering if i have nits and it mekaes me feel very self conscious
unlinkedstudent | 19/05/2008 10:06:00
I'm now 44 and was diagnosed with nail, pustular and arthritic psoriasis in 2000. However, in 1998, I had no finger nails on eight of my fingers/thumbs (AT ALL), NO fingerprints, and hardly any skin on the palms of my hands. One of my feet didn't fair much better either, although my toe nails were okay. It took TWO years to get a proper diagnosis and be referred to a dermatologist after I was fed up with being told I too had ring worm, a skin infection, etc. It was only after I saw an article on the web with photos that I diagnosed pustular psoriasis and presented myself at a local A&E who got me an emergency appointment with a dermatologist within a week. I had 12 weeks of PUVA treatment three mornings a week which resulted in me losing my job. I was also prescribed Dovonex cream. However, I was experiencing excruciating pain in my hip which everyone assumed to be from a fibroid. I argued and six months later, got referred to a rheumatologist who was horrified that I had not been referred sooner and was given a choice of medication. I spent two years on Methotrexate but detested the side effects so after discussions with my rheumatologist, stopped taking it.It took about a year to get my fingernails back and the skin back to a reasonable condition on my hands and feet. I no longer use Dovonex. I don't use the majority of soaps/bubble baths but tend to use either Sanex or Dead Sea soap. Even the choice of washing up liquid plays a part and use Ecover. I avoid eating cheese and drinking milk on the same day.After 4 years, I needed a walking stick as my left hip and knee are affected. The last two years have been pretty good, although I did have a progression of the disease by getting severe tendonitis in my right ankle up to my right knee this winter. Thankfully, I've hardly needed to use the stick this winter.The best treatment I believe is long haul holidays in the sun and getting a decent sun tan (2 weeks in the caribbean totally recommended, along with decent sun screen protection). This tends to help keep the symptoms at bay for the winter! I take Naproxen 500 when the hip gets mega painful.I know I've still got too many white blood cells as I've only had one cold in the last four years.I think hormones play a significant role as I had a hysterectomy as a result of the fibroids. Last year I had an ovary removed due to a last cyst and I also have severe adhesions. However, I do think things improved since the hysterectomy 4 years ago.My rheumatologist is surprised I'm not back on methotrexate.Looking back, I think I probably had guttate psoriasis as a teenager but this cleared up when I started on the pill; another reason why I think psoriasis is affected by hormones.Incidentally, my original GP struck me off when I was diagnosed with arthritic psoriasis (yep, the same one who said I had ring worm) as apparently I would be too bigger strain on her resources ... I'm so pleased we parted company and have nothing whatsoever to thank her for apart from unnecessary suffering for the first few years of undiagnosis.
Will | 19/05/2008 11:09:00
This condition torments me night and day. It is on my head and arms. The hospital consultant and the G. P. are a dissapointment. A previous consultant ordered me a wig to cover the mess on my head. This stopped the cruel humiliating comments. Now the new consultant intends to stop the supply of wigs in order to save the health service money. My emotional feelings are not considered. If I was an illegal immigrant or undesireable person awaiting deportation, the law states I am entitled to national health treatment. If I was the father of some Eastern European temporary worker I would also be entitled to national health treatment. This can,t be right. Unfortunately I am a sensitive person and this will never change. the emotinal feelings of sufferers is not to be ignored. I welcome any constructive advice. Thankyou.
unlinkedstudent | 19/05/2008 12:07:00
Will, I am so sorry to hear of your experiences. Have you thought of contacting PALS at your local PCT to approach the Special Panel to see if the cost of your wigs could still be met by the NHS or is it a general ruling for all NHS/PCT Trusts? You could consider telephoning the Department of Health helpline for advice (sometimes they can be of use).I forgot to mention that I occasionally get psoriasis on my scalp too, although not to the extent that you do. I find that Neutrogena shampoo tends to help soothe it. I can't use a load of shampoos but find that I'm okay with the Aussie brand.Have you thought about changing your GP?Best of luck.
Maggi | 19/05/2008 13:38:00
I was diagnosed with Psoriasis in my late teens and I got it first behind my knees and on the inside of my elbows. I've had all sorts of potions and creams over the years but things got substantially worse when I was given steroids after getting infected feet from paddling in raw sewage in Cornwall (ughhh) and I developed a sensitivity to sunlight, particularly on my feet. In the end a change in diet and homeopathic treatment has got rid of all the psoriasis from my body apart from my forehead and scalp. Most of the time I have a thin line of psoriasis along my hairline but when I'm stressed it comes down as far as my eyebrows and is painful. However, I wear a fringe and just have to resist picking. I wear factor 40 sunblock on my body and 50 on my face to cope with the rash from the sun and can't use perfumed products or hairspray. My scalp is particularly sensitive to conditioners. I use Clarins facial products as many years ago one of their therapists in Leeds successfully helped me with my acne after years of viscious dermatology treatments.I found various GPs to be wholly unsympathetic to skin complaints in general. The dermatologist I went to as a teenager never really spoke to me, only my mum, and didn't seem to acknowledge the burden my allergies, severe acne and psoriasis were on someone already struggling with puberty. I really struggle now with hairdressers who are aghast when they see my scalp and seem to have little training in skin conditions. Juniors are particularly bad at not following my strict 'no conditioner' rule and I've had many a bad flare up after they've put some on. Paul Mitchell is the only one I'm OK with but I just don't risk it. My acne and psoriasis have left me with scarring, particularly on my face and forehead, and I'm now trying bio-oil with some good results. I haven't seen a doctor or dermatologist for over 10 years regarding my psoriasis.
DIANA SHIELDS | 19/05/2008 14:01:00
Don't let it get you down. Try to keep a general moisturiser to hand at all times. I am 60 and I have had Psorisais for 20+ years. It is was very bad on my scalp. Recently I tried Turmeric and I have found it does help the skin but I still have a little flakiness on my scalp. If you explain to the hairdresser you have Psorisais before they start, I have found they are usually very understanding, they usually just ask if it is sore but mine isn't.
Kathy | 19/05/2008 14:21:00
I have had psoriasis since the age of 4 (am now 43) and have had numerous treatments over the years. Luckily, I now only have it on elbows and knees which can at least be covered up. I haven't been to the doctor for over 15 years about it. My grandad had it and I was told it always skipped a generation but from reading the comments, I guess this is a myth. He rang me recently to say that he had grown out of it - he's 89!
Phil | 19/05/2008 16:57:00
Hi all, i posted 2 messages above. Just reading messages recently about psoriasis on the scalp. I stated above nothing really works with my psoriasis. But reading about scalp probs reminded me. I was prescribed "Dermovate Scalp Application" also "Betacap" . Both are clear none greasy liquids, hardly any odour too them, that you apply to your scalp. As regards psoriasis treatments those two are the only thing that works for me. I used to have it severely on my scalp but after using those i rarely get it in my hair at all and if i do i apply treatment where and when needed. The fact i forgot about it just shows in MY case how well it works. Ask your Doc about it! You never know it might help. All the best.
stibs | 19/05/2008 18:10:00
Diana - am interested in how you used Turmeric - have not heard of that one before! How do you use it?
Lila | 19/05/2008 19:35:00
Hi all, I have been diagnosed for 4 years, get it quite lightly on arms and thighs but not recently. What I find works best is no creams prescribed, only aloe vera gel concoctions I have made for me, one I have now is for psoriasis and excema and has essential oils and other natural things, kept in the fridge and soothing, disappears on any flare ups...Ihavent had any flare ups for months and I credit that to using soap free soaps also made specially with some lovely natural things in like lime and orange and lavender, and also a very healthy diet, fruit nuts seeds, no alcohol smoking ect...my daughter had flare ups of excema and she no longer does because she has used giats milk soap, very inexpensive, little heart in a set of 8, last ages and all natural, also drinking goats milk is supposed to help for excema.If you have light flare ups i would recommend no creams and trying everything natural that you can...read up on as much as you can, dont just accept the first thing the professionals say or do, chemicals arent good for you if you can do anything before it takes hold try as much as you can yourself, it does work!
Lisa | 20/05/2008 00:29:00
I am 26 years old, and I cant remember when I first got psoriasis....I must have been a young child. I seem to only get it now on my face and chest, but I occasionally have outbreaks on my arms and legs too. I also get it on my scalp and round my hairline, but using T-Gel shampoo (which can be bought anywhere) is the best thing (at least for me personally). I havent had a really bad outbreak for a few years now, as I tend to go on a sunbed once or twice a week, which has really worked wonders for me! A combination of the rays and a prescription cream called Fucibet have ensured I havent had any bad outbreaks for quite a while now. A few years back, I had a particularly nasty outbreak on my face which lasted for months and months and made me look like I had been burned all over my face (I was at uni at the time). Numerous visits to my doctor resulted in being given steroid cream (I have since learnt that you should never put steroid cream on your face!), tablets which didnt do any good, and advice to stay off sunbeds. Although sympathetic, I was getting nowehere fast, so carried on with brief spells on a sunbed, as I had noticed that my skin was always great when I was abroad on holidays. Within a few days I noticed a huge improvement, and within a week or two, it had cleared up. I have found this is the best method for me (some hospitals do have special sunbed facilities specifically for psoriasis sufferers, so I doubt this is very harmful to me, as long as I dont overdo it!). I was also introduced to Fucibet cream by a friend, which is amazing stuff. Any little signs, I slap it on, and it clears up within one day. I really hope my post might be of use to some of you!
Davey | 20/05/2008 02:25:00
Psoriasis I have had for 30 yrs now 61, I consider myself to be a mild suffererer from knees to waist, elbows, scalp I find to be most conscious of, occasionally upon and around the eyelids and mouth. Other than that psoriasis lives with me, hence I have given up years ago feeding it with ointments and creams, cause I came to realise it is, what it is, with OR without. Luck I must have, as I have seen a full body sufferer and their life is blighted. Heat I like for two reasons my arthritis of the spine, also keeps the psoriasis company.
ALISON | 20/05/2008 02:57:00
I have has psoriasis from the age of 13 and im now 47. Over the years ive used every lotion that has been on the market but for the last year my psoriasis have cleared up as ive been using Exorix lotion . I would recomend this to anyone and have done to people i no with this condition and its helped them ..... I had got it in a health food shop but my doctor give it to me in prescription .I find the lotion is better that the cream and the shampoo is very good also for clearing the head....Also have stopped eating meat and feel this has helped my skin also..
Karen | 20/05/2008 06:46:00
I suffer on and off with psoriasis, had it bad when i was in my 20s now 42 and touch wood, not having bad outbreaks, maybe i'm more chilled now and less stressed i don't know. I take things more in my stride and try and keep calm about problems, when i do get too stressed i start getting lumps and bumps but then when i sit down and calm down, do lots of things for me then they do seem to disappear! Luckily my psoriasis has been on my scalp and tops of legs, which i can cover up.
Carole | 21/05/2008 14:47:00
I am 48 and have suffered with psoriasis since I was about 1 yrs old. It has come and gone over the last 37yrs. I have been prescribed methotrexate on several occasions which I found cleared it completely, albeit the drug itself has to be closely monitored and involves regular blood tests which can be a bit of a nuisance having to trip off to the path lab every week. I found that it came on with a vengeance during pregnancy and was told by my consultant that hormone hanges during this time can cure it or make it worse, unfortunately I suffered the latter. I had PUVA treatment as a 'guinea pig' in the early 90's and it was tremendously successful, clearing me of it completely, plus the bonus of having a fantastic tan lol. Eventually it all reappeared and as I've become older it seems to start on areas that I have never had it before, in fact it is now on all areas of my body and I have developed a couple of small patches on my face. I am currently at the beginning of a course of UVB treatment again (I had a course last year which was 80% effective) which seems to be working ok. I fully sympathise with everyone, particularly the younger people, I was incredibly self conscious wen younger, and still am to a certain degree in that I won't go swimming or anything like that, but I have found that I don't cover up my arms as much as I used to. I have found that over the last few years people seem to be alot more aware of what it is, those that have never heard of it I find understand if you say it's a bit like excema, they seem to understand more fully.I have used all sorts of lotions and potions prescribed to me over the years but one thing that I 'stumbled' upon through the internet whilst researching excema for my mother-in-law was Emu Oil. I founf that this was one of the best things ever, not by any way a 'wonder' treatment but certainly worth a try.I have now been diagnosed with Psororatic Anthropopy which is causing me more problems than the psoriasis itself because it is an extremely debilitaing form of rheumatoid arthritis which doesn't seem to respond to the usual treatment for RA
Will Henry | 21/05/2008 18:51:00
Maggi, 19/5/2008. Thank you for your comments on my predicament. I have now started to investigate what ever complaints procedure is available to me. It seems that not enough understanding is given to the emotional stress that some of us suffer and we must bring this to the fore and inform those involved in our treatment The thoughtless , callous behaviour of the very people who should know better must be corrected. We, ourselves, are the only ones who can put this right. thankyou
robert gow | 21/05/2008 19:53:00
Having had psoriasis for about the last thirty years I have had good support from my GP, but I have found my condition seems to take it`s own course.I now take medication for arthritis which includes methatrexate which is said to help psoriasis and up till now my psoriasis still seems to just take it`s own course.Over the years I have tried just about everything and found that using T-GEL neutroena therapeutic shampoo has done as much as any prescribed creams/ointments,etc have done
Julie | 22/05/2008 08:40:00
I first developed psoriasis when I was pregnant with my first child at the age of 18. I knew what it was as my mother had suffered from it since she was a child, but my doctor took 2 years and several treatments of ineffective creams to agree with me. I recall having ultra violet light treatment which didnt work for me as I got sunburnt within the first couple of days and they had to discontinue treatment. At its worst, it affects my scalp so badly that it feels like I have a very tight swimming cap on all the time. Every time I brush my hair it leaves a snow-fall on my clothes and in my hair. I have found that dosing my scalp with baby oil for a couple of hours, then combing the thick scales out, helps the treatment shampoo actually reach the skin. The first thing you reach for when you have a scaly scalp is anti-dandruff shampoo, but this accelerates the growth of my psoriasis so I avoid it like the plague. I am now 49 years old, and luckily I am currently clear, although I get an occasional bout of weeping patches which I use trimovate cream on. People who have never had experience of psoriasis have no idea of how it affects you, and many treat you like a leper. Doctors still do not realise the impact this has on our emotional and mental well-being. My mother told me she usually cleared up when she was pregnant, and I have found that taking contraceptives does have an effect on my skin, although few doctors believe me. My children also suffer from mild psoriasis, which means we have 3 consecutive generations affected by it, though research suggests it misses a generation.
sue | 22/05/2008 13:39:00
I have had psoriasis since i was 14 and am now 55. My Mum also had it but can not recall any other family member having it. I am one of five children and the only one to have it. My Son doesnt have it nor does his 3 children. So I think the chance of anyones children getting are a low percentage. I have to admit that from my own personal point of view this horrid condition has ruled my life. Wearing cardigans or long sleeves on hot days just to cover it from curious onlookers. Annoying when i know how good the sun is on it but too embarrassed for others to see it. Afraid to go swimming for the stares i get. Another pastime that i adore. Been in hospital more times than i care to remember for various treatments from smelly greasy slop, to skin blackening dithro paste to puva treatment. None of them make any long lasting difference at all. So I have now given up and just let it take its course. The more i worry about it the worse it gets and since stopping all treatments it is far more manageable. Just occasionally if it gets too dry it splits and then i just moisturise. I have it all over the body in various places and the scalp is probably the worse. Means I can never go to a hairdresser and have to chop my own hair when it needs a cut. As for personal relationships i have always kept covered up even to my Husband. I divorced and recently remarried and my new Hubby is an absolute angel. Not only has he seen it but he puts on any moisturisers for me and has totally changed my outlook to it. For the first time in my life I have not kept myself covered up. So please dont ever think you cannot lead a normal married life and have kids. All you need is a partner that understands how you feel. Took me a long time to realise that it was me who was bothered about it more than other people.Doctors over the years have never even asked how it affects me emotionally all they seem interested in is the treatments for it.Like another lady said, I have other health issues to worry about, arthritis, lymphodema etc.I just wish there was more information about it freely available to non sufferers then it would be more acceptable to the general public. It is surprising how many ignorant people think its contagious.My heart goes out to anyone with this condition as it can be extrememly painful at times.
Lucy | 23/05/2008 12:09:00
I was first diagnosed with psoriasis on my legs, elbows and scalp when I was about 23. The doctor simply said that it is incurable but to try dovonex. This was midly effective but left me feeling that if it didn't work there was no other way of managing it. I put up with psoriasis and it sometimes became bad and sometimes was manageable, never sever, so I knew I was 'lucky'. After the birth of my second child I got a bout of strep throat, six weeks later I was covered head to toe in Guttate Psoriasis. The doctor was not hugely comforting, he classed my condition as a 'superb example that should be in a text book'. Great - just what you need when you feel that bad. Again I was given Dovonex and not told anything more.The guttate has slowly disappeared after about 6 months and the resulting pigmentation loss in patched is still noticeable after another 6 months. My condition on my knees, arms and scalp is probably a little better than it was previously but it seems a lot better after having the guttate. I can honestly say that all the doctors I have visited have not been the least bit helpful, reassuring or informative. The internet has become my psoriasis saviour and I now find relief in the form of natural therapies and supplements.
Judithgirt | 23/05/2008 12:28:00
I have the type of Psoriasis Called Pandular Pustular and it only attacks the hands and feet, The last outbreak I had I lost all my nails I could not walk as the soles of my feet were covered in pustules and were cracked and bleeding, Icould not use my hands so life became very difficult.
John anon | 23/05/2008 12:42:00
I'm now mid-fifties and have had P since age of thirty - birth of first child a stress? I haven't been to GP for four or five years now - just get repeat prescriptions. After half-heartedly using Dovonex and E45 I made more of an effort in the past couple of years after going back in to the dating game. My new partner insisted on creaming me morning and night (oogh - nice!) and it more or less cleared up - just the occasional patch now, mostly elbows. I have a fine head of hair and only use Polytar shampoo; I didn't have P on my scalp but thought I might as well get 'free' shampoo with my 'season ticket' prescription. I don't worry about it now so the best advice I can give is: Ignore it - it might go away.
Rich Wightman | 23/05/2008 13:08:00
I get a very itchy flaky scalp at least once a month, i have used so many different medicated shampoo's but nothing seems to help, I have been told that this is psoriasis.
Angie | 23/05/2008 13:45:00
I first had psoriasis when I was five, just starting school, it was all over my body the first time and the only teatment received was cold tar, which stained your clothes, your bedding and smelt really off. I recovered from that and next had it when I was 11, this time it was not so bad, but had the same treatment. The next time was after I was married and had lot a baby at birth, this time it just came under my breast were my bra is and it was really sore, due to having to wear the bra, it rubbed the flakes off and left a scar. I had it once again when my brother-in-law got killed in an accident, it appears stress, upset can set it off. keep stress low!
mandy | 23/05/2008 14:42:00
I guess I'm lucky that mine isn't too bad and can be easily covered up in winter. I get a few stares in summer but in if it's a choice bewteen seating in a long sleeve jumpe and getting a few stares then I'll have to put uop with the stares. It does get a bit ictcy sometimes but oilatrum or lotil cream usually helps with that.
lucy 24 | 23/05/2008 15:12:00
my dad had psorasis from a young age. he died when i was 16 and litterally 24 hours later i was coverd from head to toe in little red spots. i was a bit too upset to worry about it at that point, but it got worse. i went to my doctor with my mom who told me it was psorasis. i was given various different cream over a period of of about a year. nothing worked for me and it just got worse. by now all the small spots had moved together in patches on my knees ,elbows, fore arms, wrists. i was a hair dresser and the water and chemical would make it extremly sore. i tryed chinese medicine. i had my palm read and she told me that my condition had something to do with an inbalance of chemicals in my liver. then she gave me some (very expensive) twigs and leaves and such to boil and drink the water. this seemed to make it worse. she told me that it would get worse before it got better. it became to expensive for me to do and the results were making me more unhappy. so i stopped that treatment. i have been back to the doctor since then but i havent been offered any other different treatment. i havent bothered to talk to any one about it for years now. i have found a man that loves me anyway. it doesnt bother him. but i would really like to hear about different treatments that could make it better because i have hidden behind it for years now and i feel its kept me back from doing so much stuff.
callie | 23/05/2008 16:13:00
I'm quite lucky in a way as my psoriasis is on my scalp so isn't that obvious to others. I was diagnosed with it when i was about 13; i'm now 34. I started using polytar shampoo & stuck with it for years. The only downside of using it is the smell! It stinks & you can smell it even when your hair is dry. This shampoo doesn't get rid of it completely but does keep it at bay. My condition worsens if i'm stressed, which is most of the time with 2 young children! If i get a flare up, i use betnovate scalp application which stings but does seem to help. I am always concious of flakes on my clothes & am forever checking my shoulders. I'm also aware that others can probably see flakes in my hair when i'm talking to them & this is really unerving. If the psoriasis is bad & itchy it's unbearable. It's like there's things crawling all over my head continuously & i'm always aware of other people watching & thinking i've got nits! I have a very understanding hairdresser but still have to coincide my haircut with a 'good day'. I've had it for so long now that it's something i live with & have learnt to deal with it. I haven't seen a doctor recently to discuss the condition so don't really know if i'm getting the most up-to-date treatment. I get repeat prescriptions for the betnovate but not for the polytar for some reason.
blue24 | 23/05/2008 19:55:00
I have psoriasis in my hair, round my neck and on the palms of my hands. having it in my hair means I constantly look like I have a bad case of dandruff because it flakes onto my clothes. Also people think I've got 'nits' because of the constant scratching. Having psoriasis on my hands was particularly problematic at work. As a nurse I constantly wash my hands with harsh soaps, these exacerbatre the problem. Also some patients look unimpressed at the state of my hands when I go to give them treatment. As gloves are worn so frequently, this does hide the problem to some extent. Treatment wise I've been prescribed Dovonex, this is effective on my neck, but is difficult to apply effectively in my hair as its so thick. It tends to clog in my hair and not reach my scalp. When I put it on my hands it is very greasy and doesn't absorb.
sharon | 23/05/2008 20:47:00
i have had psoriasis since i was 7 i am 50 now through the years i have seen differant doctor specialist i have spent 3 months in hospital at worse spells of my psoriasis it calms it down but i have never been free of it i think we just know we have to live with it peaple stare and the worst thing is they think they can catch it like the flu itry to hide it by wearing trousers and long sleeve jumpers but it on my hands and on face these are places you cannot hide but i am use to it i have a good husband and 3 lovley children and 4 granchildren so i am a happy person and i learn a long time ago i have a lot more than what other peaple have not and i am also happy that none of my familyhave it
maura | 24/05/2008 02:23:00
I have aform of proriasis which the dermatologist found was neither strictly eczema nor strictly psoriasis but he found a cream which fades it if used twice a day without fail. As some of the patches I can't reach, I end up not bothering unless the patches are itching a lot. The reason my case is odd is that I have M.E Known by some as CFS. In 1985, I developed what looked like bites , I think they could have been Lyme disease starting due to the classic 'bull's eye, but the jury is out on chronic Lyme and ME. Anyway, After they went down a bit, they left scaly patches. A few months later, the patches came on their own without the 'bite/wheal or whatever it is. Now, still with chronic ME, I get new patches, possibly seasonal change affecting this and occasionally the 'bites' which will leave the scaly patch. They don't itch much, so generally don't bother me too much as they are on my trunk mostly. I feel so sorry for you Ohil. It has affected your self esteem and due to the ME I know a lot about that and about public disbelief! So, I am not my M. E. You are not your psoriasis. In fact, your suffering probably makes you a really understanding person. The cream I was given was dovonex. Would like to know what supplements etc lucy found on internet. Also, what is the biological thing just licensed for self injection? I think p is an auto immune thing. Stress does effect the immune system, so I acn see why many people mention it as a trigger. Phil, Will, I'm a sensitive person but as a result of being bullied by neighbours and having not the best famuilies in the world, at the grand age of 45 to say, 'I don't care what you think of me'. It's still hard at times to put into practice, but we can grow from our suffering and in that growth, the cure may lie.
melissa nobbs | 24/05/2008 10:13:00
I first got psoriasis when i was 12 and it's been an ongoing battle ever since, i am now 31. Creams have never worked for me. I started using sun beds in my mid 20's and they kept my psoriasis away completely but i then realised that was not the answer to my problem long term so i eventually stopped using them and my psoriasis came back. I then had a car accident in November 2006 and my skin flared up badly, i had to see a skin specialist who told me my psoriasis was severe covering nearly 60% of my body. i have now been taking Methotrexate for about a year (which is also used for cancers) the side effects are not good, i'm always feeling exhausted and my hair has thinned out, but the psoriasis is gradually going away month by month, and if it clears up completely through taking the Methotrexate, the psoriasis could stay away for years, so my fingers are crossed!!
Wendy | 24/05/2008 21:20:00
I am 54 years old and have had psoriasis all my life. Most creams and steroids dont work. Like another lady i found the only solution was the sun. I do find that if i go on a sunbed for a few minutes every couple of months this does help a lot. I have got two sons and have passed this condition to both of them but knowing what it was like i sought help for them as soon as the symptoms began to show. Even so it can flare up really badly on my youngest. With all the research done these days surely someone can come up with a cure instead of all these steroid creams we have to use daily.
inquizative | 24/05/2008 23:29:00
i suppose it started some 70 odd years ago and it was put down to rubbing my elbow alot on the desk and work tops then later on whe starting work i was told i had a dry skin but later it was either dermititus or excema depending on which doctor i saw till about nine years ago after tests at the hospital they decided it was psoriasis it was mainly my feet that i had trouble with but now i have it on my legs and on my hands which some times drives my mad by the itching and samll blisters which weep and scab over
Kizzie | 28/05/2008 00:16:00
I was diagnosed with Psoriasis at age 10, just as I was going into secondary school.I only had it on my elbows and knees originally which didn't bother me at all so I never used any treatment regularly. Then it appeared on my ears, eyebrows, face, in my hair and many other patches all over my body. It was only when I got it on my face then my eyebrows and hair above my forehead started falling out that I really started getting anxious about it (which obviously didn't help!) and then I repeatedly went back to my doctor for medication. My doctor wasn't at all sypathetic; his attitude was 'well you've got it for life so get used to it'. I have tried so many lotions, creams, washes, shampoos - none of them worked. Then my sister brought me some Argan Oil Cream back from Morocco and it worked wonders although the smell was a little strong! The Argan Oil ran out and couldn't find anymore so then I tried Hemp Cream from The Body Shop and that worked brilliantly too although it has to be applied everyday without fail to maintain the moisture to the affected area.Then my other sister's friend who also suffers from it, suggested using Exorex Lotion/Cream that her consultant had prescribed for her. That is the best thing that I have used to date in 20 years. You could notice the difference within days and only took a few months for my psoriasis to almost disappear completely after being 75% covered it. It's available to buy over the counter too and not at all expensive.After a little research I found that coal tar treatments and the general creams that the doctors prescribe do not always work on Psoriasis; for me, I have to use an ointment that doesn't contain 'normal' ingredients. I also found that although emersing yourself in water for a while helps get all the excess skin off and makes your skin 'smooth' for a bit, it seems to aggravate my condition; if I spend no more than 10 minutes in the bath then I'm okay but any longer than that and I itch badly and the patches are sore and inflammed, which is annoying as I love long baths!!It's been great to read everyone's comments and experiences.
Ali | 28/05/2008 17:59:00
I have had psoriasis for the past 12 years, just after the birth of my third child, it started as a small patch on my elbow, and gradually got worse and worse, my doctor prescribed lots of different creams and potions but to no avail. He eventually referred me to the local Specialist Dermatologist.I was with this Dermatologist for approximately eight years, tried treatments that included,steroid creams in varying different strengths, which are not good for your skin in the long run as can cause thinning of the skin, tried daily dressings didn’t work. Also had a spell in Hope hospital in Manchester to try calm down and maybe clear my skin to some degree, this did help improve my skin a little but not much, as soon as I left hospital it was as bad as ever again. Next came Phototherapy, that didn’t work, then came tablets, with lots of side effects and risks, each person will be different but I weighed up the pros and cons and my quality of life and decided I was willing to try anything to try improve my skin. Tried Methotrexate, Cyclosporine and Acitretin, had some success with Cyclosporine but unfortunalty my body could not tolerate it and had bad side effects, it started to affect my liver, kidneys and blood results, so had to stop taking them. I was then referred to see a Professor at Hope Hospital, one of the main dermatology units in the country.By this point I have had Psoriasis for about nine years, gradually getting worse, what really annoys me is when people say “its only a rash” “you don’t die from it”, no you don’t die from it, but when its really bad your quality of life is nil, at its worst Psoriasis has covered maybe 70% of my body, its been that dry and sore that I could not sit as it was to painful, it covered my bum, backs of legs, so sitting would cause it to crack and bleed, even moisturising did very little as it would just dry out within a hour, lying in bed would be a nightmare, when it covers the whole of your arms and legs you cant lie down, turn over without being in pain, your hands crack, washing, washing up and doing things that most people take for granted can be so hard, it can effect every part of your life, mine effects my relationship with people, what clothes I wear and even if I go out or not, its not nice when people move away from you, stare at you or make comments, it even effects my relationship with my husband, it makes me feel ugly and dirty, and can be so painful that I just want to be left alone, it effects me mentally just as much as physically, I have no confidence any more, I feel embarrassed to go any were as I very often leave a pile of flaky skin behind, I could go on, but wont, so no you don’t die from it, but depending on the severity of it, depends on if you feel like you have a life or not.At hope I have tried Enbrel self injections twice a week, this didn’t work for my, so Professor decided to try me on Raptiva one a week self injections, these are the biologics treatments which are supposed to be really good, well for most people, just doesn’t seem to work for me, going to see the professor today but don’t think raptiva is working much, not sure what if any options left, but I can hope.
Michelle | 29/05/2008 12:35:00
Hi, I was first diagnosed when I was about 20. But I had patches of it from about 13, on my scalp and pubic area. At age 20 the doctor prescribed cortisone creams and the use of a coal tar shampoo. That kept it under control until I was about 25. Then it flared up really bad, starting from my knees and elbows. I saw the doctor again in early winter, and was referred to a reputable Sydney dermatologist. After paying hundreds for the privilege of seeing her, I was put on a course of UV light therapy at the clinic. This largely cleared up my psoriasis for a couple of months, but then it flared up even worse than before. I went back a year later to the same dermatologist, and she thought I was such a severe case she brought in some of the resident doctors to observe which was embarrassing. She prescribed, is it Daivonex? That horrible yellow stuff that you put on for 10 minutes and then wash off, and leaves brown stains everywhere. I happened to be reading The Dancer Upstairs at the time, and cried when I read of the character Ezekial's psoriasis. It upset me a bit, and I decided I didn't want to become a recluse terrorist, even if it is hard sometimes to go out with psoriasis! The stuff did help but didn't really get rid of it, and then by the time I ran out the prescription had expired and I didn't feel like forking out more money to see her again and get another prescription. It's just so much hassle! Add that to the other health issues I have - like asthma - and the usual women's health check ups, and my hands are full just looking after my health. Since then it has only become worse (I'm now 28). I put sorbelene on it to stop it from burning and itching in the dry cold winter at the moment, but it's still spreading. I use cortisone creams to keep it at bay especially when spots come out on my face. I try not to think about it because it just makes me so depressed. It's all over my elbows, I have spots on my hands, and huge patches on my knees and right shin. I hate it because I haven't been able to wear skirts without oqaque stockings for a few years now, and I have otherwise great legs. I'm not sure, but I feel having been very attractive in my early twenties makes it harder to cope with. I got lots of comments on my thick dark hair and beautiful olive skin, and lovely figure. Now I"m overweight and cant' lose weight, and have to cover my arms and legs because I can't lose the psoriasis. I just feel cheated of half my twenties. My doctor is sympathetic but hasn't been much help. I understand that there's no real cure for psoriasis so I don't criticise him for not being able to help more.I'm terribly unsatisfied with the lack of treatments for psoriasis. I get so angry at doctors and dermatologists blaming the patient with this disease. Every time I say that a treatment or cream hasn't worked, they say "But do you put it on every day? Are you using it regularly?" It's as though they don't believe me. I'm willing to try everything. I bought a UVB lamp over the internet for $800 a few years ago, but was so concerned about burning myself I didn't use it for long periods and it never did anything. Now I'm trying Dermylex, a dairy-based natural enzyme from the US that's supposed to help. I've taken the tablets for just a couple of weeks and no results yet.I have very little optimism that there will ever be a cure or true remedy, and I avoid telling people I have psoriasis because everyone has a suggestion for what worked for them or a friend - usually something I've already tried without success. Now I'm going to hit submit and try to forget about it because I'm just getting upset writing this.
Melanie | 30/05/2008 17:51:00
I have psoriasis since the age of 14 and I have had it all over my bobdy. When I was pregnant with my first child, a beautiful little girl it completely cleared up, but when I had my son 9 years ago it came back with a vengance and my mum said I looked as if I had been in a fire. I have since met a great dermatologist who has made living with this horrible skin condition liveable. At the begining of 2007 he but me on ciclosporin and for a whole year I was clear and it was great, but it started to have an affect on my kidneys so had to stop but it was great and I tried so that makes it worth it. He then asked me to try light therapy I wasnt convinced it would have any effect on it. How wrong was I after 3 weeks I noticed it was working but I then developed itch and was no longer able to have light therapy I am now on another tablet called methatrexate which seems to be helping although you can only take this once aweek. What I am saying to all you suffers out there dont let people fob you off insist on other treatments. And dont let people put you down.
fdrinkell | 30/05/2008 23:45:00
Fortunately my psoriasis is only apparent on my knees which is no big deel till the summer months arrive.My rhematologist has recently suggested that what i thought to be rough skin on my hands is in fact psoriasis, psoriasis is often linked with other conditions like arthritis & rhematism.My hands get red & sore but without the characteristic flaking, they do get so dry & rough though that they split & bleed.I have not to date had medication for psoriasis but I may well have to in the future
Tanya | 31/05/2008 06:24:00
Hey everyone, I' m 26 years old and I have psoriasis since the age of 11. It started with my scalp and during my high school years got to the rest of my body. Living in southern CA doesn't always make things easier; the weather makes my psoriasis worse. I have tried every topical medication there is on the market, and in the beginning it will work like a miracle but after a month or so it will come back twice as much. I have also tried the UV lightning booths, which didn't help at all, I have also tried homeopathic medicine some will work but will not clear it completely. I have been to more than a dozen different dermatologists they will try to help but will end up unsuccessfully, emotionally they just cannot relate. I have had a hard time with people trying to understand it; some were not as supportive or understanding as others. But having the support of your family and close friends makes things much easier, they help you forget it or just don't pay attention to it. People in L.A. are very superficial and not understanding, looks are everything to them, and everything else doesn’t matter, even if you’re a good person on the inside or pretty on the outside but have medical problems they don’t understand that. At the moment I am using for my body an ointment called Taclones and it helps me out pretty well, and for my scalp i am using Clobetasol solution which gave me great result, for how long this medications will help this time around no one knows only time will show, all I can do is try not to stress out and not care what other people think. Living where I live I learned that the only opinion matters is your own, and everyone else can just go to hell. Your family and friends are your supporters and understand you and that is all that matters.
sue | 01/06/2008 13:31:00
my psoriasis started when i was eleven,when i started my periods. I had it realy thick in my hair,i was admitted to hospital, where i was treated with dithranol,(which didnt suit my skin), by the time i came out of hospital, i was covered in psoriasis,head to toe. That was the start of years of treatment as an inpatient in hospital. I would be in hospital for 10-14 wks at a time.couldnt do games in school,couldnt wear the clothes i wanted to, never wore a skirt. When i was sixteen it was the worst it has ever been,i had it so bad down my back and on my legs that it used to crack and bleed when i sat down,my dad used to have to carry me upstairs. I was admitted to hospital, i was there for 17 wks,where they got some control over it. at this time P.U.V.A had come to the hospital from america,i was one of first people in uk to use it. It helped, a bit. Over the years iv had every cream, ointment,lotion going. Ive got psoriatic arthritis, so have had methortrexate and sulphorsaladine.I have lots of scars under my arms and my thighs due to 22 years of constant use of hydrocortisone creams and ointments,which are unsightly but to the way my skin has been in the past, i can live with(no choice). But like i read in someone else's comments,psoriasis has a course of its own. AM now 42,and my psoriasis is the best its ever been,i use dovobet ointment as i need to and iam,for the first time in 30 years, not under a dermatologist!
Rach | 16/06/2008 15:53:00
Mine started at 11 years old and still have it at 23 years old. It has an entire hold over my Life. Doctors answers are creams which do not work, or do for a limited period of time and then it comes back worse. Emotional support is required as many barriers come up in life with this disease and you have to face them. Family provides the biggest support. When I receive treatment from a dermatologist it is normally UVB which works but again for a limited period. There is nothing to help us to recover and deal with emotional issues and stress which is the mine cause of my skin flare ups. I have tried many lotions and diets which no avail. Its deeply upsetting when you can wear what you want to wear because of your skin and if you do you just get stares of people. This makes you even more worried and stressed and makes your skin falre up even more. This skin disease is one entire nasty circle which I seem to never recover from. Hopefully one day there will be a cure.
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