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My Experience of Psoriasis

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  • A pain in the bum
  • cracking painful skin
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      10.08.2009 17:22
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      Try everything but don't let psoriasis get you down too much

      I have had psoriasis since my early 20s so I have now had it for most of my life and am resigned to it being unlikely to go away. At first I noticed very dry skin patches on my elbows and knees that started to spread and the first GP I consulted told me not to worry, it had been brought on by tonsilitis and would clear in 3 months. I went back 4 months later and he told me I wasn't going to be one of the lucky ones and I had it for life. How depressing that felt.
      Since then and now I feel like I've tried everything but don't think there has been much time when I was completely clear. It was certainly worse in the early years when I had it quite badly on my scalp and left flakes of skin in my wake.
      I don't know if it is stress related as it has sometimes flared up when I feel fairly relaxed and at other times when I have been going through stressful times it has perversely been at its best. To recap the remedies I've tried:

      Light Treatment

      In the early years I used sunbeds on the recommendation of my GP and later a consultant referred me for a course of UVA treatment as an outpatient in hospital. No real improvement but did get a lovely tan.

      Chinese Herbal Medicine

      An expensive and disgusting waste of time. I had to boil up foul tasting herbs and then try and drink the brew while trying not to retch. Gave up fairly quickly on this one.

      Reflexology

      No change although to be fair the therapist didn't claim there would be, I just thought it would relax me and remove stress. Very pleasant though.

      Steroid creams

      Effective but never clear it completely but certainly improve it to an extent I can happily live with. I always feel uneasy about the long term consequences of using these creams though.

      Vitamin D creams (Dovonex)

      Pretty effective when my skin isn't too bad. Much prefer the ointment which seems to stick down the plaques and moisturise my skin much better than the cream version.

      Alphosyl

      I used this when my scalp was affected. Not the nicest smelling shampoo but fairly effective.

      Diet

      A doctor once suggested that red meat aggravated the condition so I was vegetarian for about 4 years; I don't think it made any difference at all. Except I was slimmer.

      Exorex

      I was really excited when I read about this as it seemed to be the answer but didn't really work for me.

      Dithranol

      A non starter as this stains the skin - and your clothing - markedly and I have psoriasis on the back of my hands so drew even more attention to it.

      Clothes

      A wardrobe of long sleeves and trousers has been essential over the years and have spent a long time sourcing lightweight long sleeves for hot days when everyone asks me why I'm wearing them.

      Sunshine

      By far and away the best for me, possibly helped by being relaxed too when on holiday. I spent some time working in Australia - for a few months and then again for a year and was totally plaque-free. Maybe I should emigrate? Luckily I am olive skinned and didn't get too much sunburn but am concerned that I may have a higher risk of skin cancer from all that sun exposure. At the time I thought the risk was worth it but now I'm not so sure ....

      Hereditary? My parents don't have it but my grandad did use alphosyl shampoo. My children are crossing their fingers - I just hope if they do get it that it won't be until their early 20s like me as I think I would have found it very difficult to deal with in my self-conscious teenage years. Now as long as my hands aren't too bad - as the skin can crack and get very painful when its flared up, I can live with it quite happily and I'm sure it makes me a less vain and less judgmental person.

      If anyone comes across a wonder drug though please let me know!

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        04.12.2008 22:51
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        Physically and mentally irritating

        I did not know what psoriasis was until I started suffering from it a few years ago now.

        When I was 16, one of my classmates was doing my hair during break time and remarked out loud that I had a big dandruff problem as she peeled off flakes as big as a 5 p coin from my scalp. Needless to say I was very embarrassed as I was not even aware of it before she pointed it out.
        As days went by, my scalp became more irritated and felt hot too. It was also covered in red patches. Although I tried not to scratch my scalp, I noticed I had scabs which just appeared for no apparent reason.

        My mom decided to take me to a specialist who prescribed me some kind of special shampoo but told me that there was no real cure for psoriasis. So this is how I found out about psoriasis.

        I was very upset about what the specialist said as he did not seem to care much and I felt very distressed at first. I tried the shampoo but it made my scalp very greasy and only helped relieve the itching to a certain extent.

        Later on I just accepted psoriasis was part of me. The specialist had said that sun exposure would help temporarily but that symptoms would reappear come winter season so I was fine in the summer only.

        After about 4 years, my mom took me to this "healer" and amazingly I didn't experience psoriasis again for several years. He told me stress had triggered psoriasis and when I look back I do believe he was right. I had experienced a big emotional shock just before having psoriasis.

        But since then, I'm afraid it has come back and I feel it's a way for my body to say "Help, I'm stressed". So I tend not to worry too much about it. I use mild shampoos and try to see how I can lower my stress levels. I now experience psoriasis on my scalp about 2 to 4 times a year and have come to accept it but it can be upsetting at times. However I know my case is not that bad compared to other cases and I consider myself lucky the psoriasis has never spread further than my scalp.

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          28.08.2007 15:50
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          Big Bad P

          Time for a story...

          Back in the mists of time...Well 12 years I discovered a few small red spots on my torso....Thinking I might have something infectious I went to my GP and he diagnosed an allergic reaction, prescribed me a bottle of Anti-histamine and sent me on my way.

          2 weeks alter I had flared for the first time, I had 30% body coverage of Guttate Psoriasis (not that I knew what it was at the time) and was very worried about what it actually was having never heard of Psoriasis.

          Back to the doc, who again didn't have a clue; looking back I find this quite worrying I mean this was Scotland I was living in, 2% of the population have Psoriasis to some extent anyway and I would have thought the lower UV level in Scotland would have made it more prevalent...but anyway he sent me off to a dermatologist.

          1 month later I received a letter telling me I had an appointment with the Derm in 12 weeks time, by now I was quite p***ed off at the NHS. Eventually I got to see the Derm and was admitted to the godforsaken hole that is the Derm ward at the Western General Hospital in Glasgow for Coal Tar treatment. I remember being lied to constantly, being told that this would go away and would never come back during my 3 week stay in the dirtiest and most unfriendly Hospital ward it has ever been my misfortune to be in. After my release I had a 6 week UVB Broadband treatment, throughout which the machines played up constantly and I ended up sunburnt most sessions. What a fantastic introduction to Psoriasis , but hey I was told this would cure it and make it go away, no-one told me it was genetic or anything.

          We moved from Scotland quite soon afterwards as I got a new post in Bath. Pretty soon the spots appeared again, so off to GP (old family doc) and within a week I was seeing Dr.Tan (still think this is a great name for a Derm ) at the RUH in Bath. My treatment couldn't have been more different than in Glasgow, clean modern Derm unit, friendly staff, full explanation (at last) of the nature of the Psoriasis beast. I was treated for Psoriasis by Ingrams regime at the RUH for 5 years about 3 times a year 6 weeks plus at a time as an out patient, but it was obvious that the effectiveness of the treatment was getting less and I was becoming resistant to the UVB treatment.

          I was diagnosed as a Diabetic, and my son was born. We moved house at this point from Keynsham to Weston-super-Mare, and so was transferred to the books of Dr.Archer at Weston General Hospital. He persuaded me to try PUVA, my next two treatment cycles were of "Bath PUVA" (where you spend 20 mins soaking in a chemical solution in a Bath to sensitize the skin to the UVA light), which were moderately effective and then I had 2 sessions (8 weeks 3 times a week) of Oral Psoralens PUVA (tablets of Psoralens taken to sensitize the skin), the latter involves spending all day wearing sunglasses as the retina also becomes UV sensitive. After the 3rd PUVA (in 18months) it was obviously not having that much of an effect anymore, so the Derm suggested trying Narrowband UVB and also prescribed me my first oral meds for Psoriasis, Neotigason (Acetritin) a "retinoid" that would hopefully reduce the Psoriasis as well.

          Over the next 6 months it was obvious that the UVB was not working, I started to suffer severe depression and ended up signed off work for 6 months, and h was at a really low ebb dealing with the psoriasis and the Diabetes. I had been told I could not have anymore UV treatment due to the risk of skin cancer after so many previous treatments. I then spent 2 years on Neotigason only with no UV treatment.

          Throughout all this I have been using various lotions potions and creams on my skin...Steroids, Retinoids, Moisturisers, Calcipritol, Banana extracts, coconut oils, all without much effect other than acting as moisturisers, I am pretty much resistant to all topical treatments I have tried.

          After 2 years the neotigason was obviously not working so the Derm moved me onto Hydroxyurea, which made me quite sick and then finally onto Methotrexate last September. I also spent 2 weeks in hospital having intensive Dithronal treatment last September....The combination of Methotrexate and the hospital stay finally did the trick, after 9½ years I was finally clear ofpsoriasiss.

          the next four months were great, I was able to go swimming for the first time in a decade, I could play with the kids (three of them now) I no longer requiredd someone to follow me around with a Hoover...Then the bombshell, the Methotrexate was destroying my Liver (my Liver enzymes were up 1000% above normal) so I had to stop taking it.

          Finally I am one of the few lucky recipients of the more expensive Biologic treatments now on the market and my current Dermatologist (Dr.Kirkup) fought for almost 18moths to get the £10000 a year funding for me to be able to take Etanercept (Enbrel), which I have now ben on for approximately 14 months

          Still have to resort to constant moisturising to relieve the itching....and resisting the urge to pick at the scales... but the Anti Tumour Necrosis Factor Drugs (Biologics) seem to keep the Psoriasis mostly at bay.

          Unfortunately I also developed Psoriatic Arthritis about 18 months ago, and now have to walk with a Stick.

          For further information I would suggest you go visit http://www.psoriasis-help.org.uk where ther is also a set of fourums where you will find me and numerous others woth the condition willing to offer support and information on how to deal with this horrible conidition.

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          18.05.2004 03:44
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          Exorex is the first off the shelf product for Psoriasis that I have found to be helpful in treating my skin condition. In fact I would go as far as to say that, for me, it has been better than a lot of the Prescription only preparations I have used over the years. I have been using Exorex for about the past 5 years now and I have been very happy with the way in which it has been able to keep my Psoriasis under control and even make some patches disappear. I had generally been using it once daily to maintain my condition and have been pleased with the results. Over the past 2 months (for reason which I do not understand) my Psoriasis has flared up very badly and have developed a splattering of patches across my body. It should be said that medicines can work differently for everyone and even for me at the moment Exorex is struggling to rid me of stubborn scaly patches, but it does seem to be containing the problem. I have NEVER experienced any unwanted side effects from using this product. Exorex is coal tar based (1% coal tar) is purely for the treatment of Psoriasis and only comes in a lotion which is light brown in colour that will stain clothes if directly applied but not if properly absorbed into the skin. It is non-greasy and very easily absorbed into the skin. It has quite a strong smell which I assume is due to the Coal Tar. I personally think it smells like tobacco and have gotten used to it by now. It is (as far as I?m aware) only available in 100ml size bottle but lasts quite long depending on the amount of skin you need to treat. Other Ingredients: Vitamin E 0.3% Complex of Esterified Essential Fatty Acids PEG 40 Hydrogenated Caster Oil Polysorbate 80 Xanthan Gum Industrial Methylated Spirits Water For use by Adults and children over 12 years Manufacturer?s instructions for use: Ensure all areas of the affected skin are clean. Apply a thin layer of Exorex Lotion two
          or three times daily to theses areas. Massage gently and leave to dry. Exorex cost approx £14.99 which is quite expensive but is now available on prescription from your G.P. Over the counter/off the shelf it is available from Boots. Exorex is manufactured by Forest Laboratories UK Ltd, Kent, UK.

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          30.01.2004 04:13
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          • "cracking painful skin"

          It really astounds me how people can be so insensitive when it comes to a common ailment such as psoriasis. Here I will write and tell you about My hubby and his condition. First of all let me tell you first and foremost psoriasis is not catching, by kissing someone, over night you will not go all red and scaly. The ignorance of people really cheese me off and after reading this opinion you will see why. Throughout this opinion I will incorporate it with my own personal experiences and also medical details. What is Psoriasis? ------------------------- Psoriasis is a very itchy condition and gets highly inflamed. It can appear in several forms which I will tell you about later. There is no cure for it and some people might have a spot or two, whilst other resemble the Singing Detective. There are things ongoing to find a cure and there are things that can help it and some do the trick for some and others like my hubby have given up hope. A normal persons white cells produce every 3 to 4 weeks and sheds their own skin. A person who has Psoriasis tends to do this every two to three days, so what this means is live living cells are coming to the top all the time coming into contact with dead cells. You shed your skin a bit quicker, well actually 7 times more quicker than a person with out it. People can get this this at different times of their life and it is predominant in the age range of 16-22, which is when Gary got it and also people between the ages of 50-60. It tends to run in families, but even if you are surprised that your child has already comes out in silvery patches or scaly bits and no one else has come out in it, all this means is that someone might carry the genes and it has just not shown its form. The Types of Psoriasis ------------------------------- There are two main types of Psoriasis and these can be split down even further and I will go into more details about th
          e ones that affect our lives. 1) Psoriasis Pustulosa which shows its forms as small pussy spots. I had these as a child but grew out of it at the age of 18 and touch wood it has not come back. These normally affect the front of the legs, which made my life hell at school as I would be the one wearing long socks in summer. 2) Guttate Psoriasis which normally shows itself as individual spots and can be after you have been poorly with a throat infection. A lot of time this will clear itself up when your body fights the infection. 3) Scalp Psoriasis - This is awful and uncomfortable especially if you work and it gives people you have dandruff. There are treatments for it but it is quite embarrassing. 4) Plaque Psoriasis which is where large sections of your body is covered in this, rather like the 80s Singing Detective. A Plaque is considered were there is a group of Psoriasis all together, some people do get small patches, but serious cases like my husband are are literally all lover his body and some are around 1ft x 3ft in size. This is what Gary suffers from. After all this to make it complete there is a condition called Erythroderma which is quite dangerous and if your doctor suspects you of having it you will be hospitalised straight away. It is when your body goes red hot and dry and nothing will help you calm it down. Right so after this, 6% of the population get Psoriasis and out of that less than 1% will get Chronic Psoriasis and out of that less than 20% will get Psoriatic Arthritis which is derived from Psoriasis which unfortunately Gary has got and this affects backs, fingers and toes. How do you know which sort you have and how do you know if you have got Psoriatic Arthritis. Well go to your doctors as soon as you can and let him diagnose you. Gary did this and was sent to the hospital to see a dermatologists and he had blood test and it confirmed that he has Psoriatic Arthritis. When
          Gary was 22 he was in the forces and he started for no reason coming out in spots. After a while he questioned it as it seemed to be spreading and not really going away so he went to the doctors who told him he had Psoriasis. At this point, it was not much of a problem and he gave him creams and so on. As the years went by all the creams, (which I will tell you about later) failed to work and about 10 years ago he became a Plaque Psoriasis. This means that large parts of his body is covered in Psoriasis. This means his skin cracks and he has large flakes, rather like the size of cornflakes, his skin is always red and we have to keep it moisturised as much as possible. He goes into a hospital every so often and this takes him a month and they shift it and then he comes back out into the big wide world and out it comes again. Now Gary has it in his hair, near his ears, all down his arms and legs, front and back, a bit on his private parts and his tummy and his back. We have tried everything you can think of but treatments for this is expensive and even the doctors moaned at how much of their budget we were using on creams he so desperately needed. In total in prescriptions we can spend around £200 a month on treatment which is not always possible so he suffers. We are not eligible for any help so we get a pre paid prescription certificate. His skin flakes off and this is really embarrassing for him, not me as I love each and every flake as this is a part of him. He wakes up in a morning and there are millions of flakes left in the bed as his skin has been shedding at night and throughout the day we are constantly hoovering up everywhere as he sheds. He got so sensitive about this but now we just joke about it and when he has a bad day, I say to him you have left the other half of yourself in the bed. That way we keep it simple and it is not a problem. Laughter is the best form of medicine. He has to have a bath at least twice a day and app
          ly cream 4 times a day to keep his skin soft. He is attending University at the moment and is doing really really well but he gets really embarrassed when he is there and is sitting down working and when he gets up there is a gentle snow fall of flakes. We got around this by buying him a pair of long johns which are body fitted and keeps the flakes in so he can sort himself out when he gets home. His skin dries up very very quickly and I have seen him bleeding and in agony sometimes when we have run out of ointment or treatment of one thing or another or the chemist cannot restock fast enough for us and we normally buy things in bulk. We tend to have wooden flooring at home so this means if he is flaking bad, we can just sweep it up very quickly. Now the next section is a bit personal but I want to give you a true extent of how it affects our lives. When we get up to bedroom activities he gets really and embarrassed and says are you sure, how can you love me with all this and my red skin. The fact is I love him and he is so divine and loving that when we are making love, I do not see his skin, I see Gary. It really does not bother me one bit and no matter what I say to him he is not always convinced. Now as a result of having Chronic Psoriasis, he also has Psoriatic Arthritis which affects his joints, especially his fingers and toes and his back. After all I admire my husband through this disabilities disease he is coming tops at his University and in his final year and he is hoping to start his business up in July. Yes there are treatments and I will tell you about a few, but before I do this, Please if you think your a sufferer from it, do not go and buy anything. Go and see your doctor first. Aqueous Cream - Soft white paraffin based cream that keeps his skin soft. £1.99 a jar. Dithranol - This was a yellow based cream that he used about 5 years ago which stained everything a horr
          ible colour yellow and ruined a settee. After moaning to the doctor he said he forgot to tell us it stains everything in site. Dovenex - Another waste of time. It cleared some of it only to reappear in other areas with avengance. We stopped using this. SSC Salcap - A paraffin and coal tar that is applied to the hair and does work. We only use this if he is housebound as your hair looks like a chip pan and grease is an understatement. Gold Injections - Deposits of gold put into the blood stream - Again another failure that did not work for him. Vitamin B injections - Straight into the bloodstream and did not work. Exorex - This coal tar based lotion can be bought over the counter and cost £23 a bottle and we used 5/6 bottles a week, it does work but soon as you stop it returns. This does not stain and is yellow in colour. Body Shop - A few years ago they did a cream and people found the banana cream great for psoriasis and it shifted small bits, unfortunately they discontinued it. PUVA - special rays of light at high power, like a sunbed, you walk into it for around 2 seconds and do this 2/3 times a week, you get a lovely sun tan but this ties you down to the hospital where it has to be very carefully monitored. We have tried Alphrosyl shampoo which he uses at the moment and keep his scalp at bay with it but he has to wash his hair everyday with it because it makes it really greasy within a day or two. We have used things like E45 emollients and the like, infact we have used most things and the reality of it all is we have to live with it. One day there might be a cure. What I must stress to you now is just because some products have not worked for Mr Bubbles it does not mean to say it will not work for you. I swear by diet for Psoriasis as when I cut out Dairy products mine just vanished but I did not have it as bad as Gary. We also find that when he eats plenty of gre
          ens and stays off alcohol it seems to get better. This week he has stayed off dairy products and you can see a marked improvement. We have just started to see a chinese herbalist and had a session but like most things they wanted £90 a week to treat him which we cannot afford. I have also cut out dairy products which I am a great beliver in that affects it whilst not cures it and in the last 4 weeks his violent red plaques have gone to a pink colour which is great. It also affects our lives in other ways as he wil not go abroad where it is warm incase people mock him. He will not swim or go in the sea, well actually once we went to Wales and it poured down and everyone left the beach, I said come on just for me, we went swimming and were like two little love birds in the sea.... Brilliant that was. He always wears long shirts and will not wear shorts. He is a prisoner of his disability, but now we have moved we have got 6ft fences around us and we are having more done so that he can go outside in the garden without people going ewwww whats he got, the dreaded lurgy! Oh well there it is, the truth about it, but next time you see someone who is chronic instead of going ewwwww, just think how this must affect them and show them some consideration, after all he is human and my husband and I love him to bits. Karen

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            03.01.2004 21:01
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            I've had psoriasis for 13 years following meningitis, I'm a firm believer in an infection causing this as no-one else in the family has ever had psoriasis and I never had a patch until my illness, which incidentally followed a bad throat infection. I've tried everything including giving up my favourite food - Cheese and drink- alcohol and every combination of nutritionalsupplements. Steroid cream reduced the inflammation but I don't like steroid creams in the long run. Nothing has worked until I read about and tried exorex. OK it's expensive and stinks of coal tar, but it is genuinely the only thing I have found that works. Go without it for a week and a flare up re-occurrs. I really try not to let my condition get me down. I just tell people straight what it is, no it's not contagious and no I don't like having it. Usually does the trick of moving on to another topic of conversation. Always try and look on the bright side - no-one's perfect!

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              13.09.2003 07:24
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              • "A pain in the bum"

              I've had Psoriasis since I was 18 I'm actually one of the lucky one's in that mine is very minor. I find that if I'm going through the slightest bit of stress then I will have an episode of Psoriasis. Psoriasis (sore-I-ah-sis) is a common immune-mediated chronic skin disease that comes in different forms and varying levels of severity. Most researchers now conclude that it is related to the immune system (psoriasis is often called an "immune-mediated" disorder). If you get it, don't think it's the end of the world because if you are like me count yourself lucky cause I don't get it very bad, but when I do it itches like mad and drives me up the wall. So it's not very pleasant. I've heard of many people who get it so bad that it becomes a disorder that they have to live with on a daily basis. Then I'd say your not lucky and my heart goes out to you. For some people it can be so debilatating and get in the way of every day life. Not only does it get noticed by people often asking what's wrong with your skin. Though people are generally more understanding nowadays you still get asked the questions, espescially by children. It also hurts, itches and irritates you. There are treatments for it usually consisting of coal tar. Which smells horrible though as you get used to it I find that it grows on you. You can get treatment for your hair and body nowadays. Methotrexate and cyclosporine appear to work equally well for people with the skin disorder psoriasis, new research suggests. You would be able to get these from your doctor. If you are in doubt to wether you have the skin condition Psoriasis you should really go and see your Gp. Though saying this when I went the first time he thought I had scabies and treated me for it. When I went back a few weeks later my skin condition had deteriorated and needed treatment. Usually I just leave my Psoriasis
              without treatment and it goes away of it's own natural course, but more serious suffere'rs need treatment and this is available from your Gp. Psoriasis is a persistent skin disease that got its name from the Greek word for "itch." The skin becomes inflamed, producing red, thickened areas with silvery scales, most often on the scalp, elbows, knees, and lower back. Although in my case they are on the wrists, arms and feet. I have to be different! In some cases, psoriasis is so mild that people don't know they have it. At the opposite extreme, severe psoriasis may cover large areas of the body. Doctors can help even the most severe cases. So as I said previously there is hope even for more severe sufferers. It may feel at times as though it's the most awful thing in the world and for severe sufferer's it probably is to them, but there's treatment and that's a positive thing to be gleamed out of a somewhat negative condition. Psoriasis cannot be passed from one person to another, though it is more likely to occur in people whose family members have it. As in my case where my Grandfather had it. If you have Psoriasis or have just been diagnosed with it then try not to panic or get depressed. Easier said than done since Psoriasis can not only feel bad, but look bad and when you get it really bad as I have had before it can make you feel bad about yourself. You find yourself worrying about wearing dresses or short sleeves or anything that shows your skin off. You feel it's not fair. Why me? But, if you can get passed this and just wear what you please you will find that you will become less aware of the condition. You see Psoriasis is a life long condition that can flare up any time, but with treatment an episode doesn't really last that long unless you have it so severe that you have it constantly. I'm trying to make light out of what is a total
              ly un pleasant condition. Because I feel if you can try and think positive about it then that's half the battle. Because Psoriasis sufferers not only have a physical condition to contend with, but they also have a mental struggle. It's a matter of feeling good about yourself and that's difficult when you have skin flaking off you all the time. Not nice. There are several different types of Psoriasis and the one I have is called Guttate psoriasis it usually affects children and young adults. Appearing as red spots after a sore throat then it clears up in a few weeks of it's own accord. That's why I consider myself lucky cause most other sufferers need treatment. Of course, I'd rather not have it at all. It's a pain, but compared to some I count my blessings.

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                13.01.2002 02:24
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                For as long as I can remember, I have suffered from an itchy scalp which seemed to come and go when I was younger. Then about ten years ago, it seemed to suddenly get worse. After I had washed my hair, my scalp would tighten, and the top layer of skin would thicken as it dried, and flake off in huge, thick lumps. Eliminating the obvious causes, like nits, I then proceeded to go through virtually every dandruff shampoo on the market. Nothing helped. My scalp got itchier, the flakes got thicker, and my collar was permanently white from the flaking caused by the scratching. I was at my wits end with it sometimes. It was beginning to keep me awake, and was also becoming very sore. But not being ill, one is reluctant to seek the doctor's advice. Foolish really! My suffering came to a head when my eyelids began to skin and crack, and the insides of my ear canals would peel where the skin dried out and flaked. Not realising the three things were connected, I initially went to the doctor regarding my eyelids, which were so sore and dry. I was taken by surprise when he diagnosed psoriasis of the scalp as the cause of all the problems. Apparently, I would inadvertantly scratch my scalp, then without realising it, rub my eyes, or touch my ears, transmitting the skin problem to these other parts. By treating the scalp, hopefully the other problems would also be treated. I was prescribed Betnovate scalp lotion, to be rubbed into the affected areas of the scalp three times a day. The first time I used this I nearly leapt through the ceiling! It was sheer agony on the already raw parts of my scalp. For three days I dreaded using the stuff, cringing before it had even touched my skin, knowing the agony that would ensue, and remain unabated for at least five minutes. I think the doctor should have warned me about this beforehand! After a few days, it no longer stung, but began to feel cool and soothing. And the itching was beginning t
                o subside, as were the peeling eyelids and dry ears, even though I was using no medication on these areas. Gradually too, the dandruff (which wasn't dandruff) began to get thinner, and less noticeable. I continued with this treatment for over a month until at long last, I was itch and pain free, my eyes were no longer half closed from dry skin, and I wasn't forever trying to scratch inside my ears, where I couldn't reach anyway! I was also advised to use a very mild shampoo rather than one containing a lot of chemicals to combat dandruff. I didn't HAVE dandruff. It was the psoriasis causing the problem. I no longer use the Betnovate all the time. There are times when the problem flares up, and I have to resort to the treatment for a while. I can usually tell when this is necessary because my lids still flare up too. I try not to use it for too long, as prolonged exposure to topical steroids (which is what Betnovate is) can cause the skin to thin. But there are times when I just have to resort to it, or go mad with the itching. What caused it in the first place? I have never coloured my hair, have never had a perm (my hair is curly enough without it) and apart from shampoo and an occasional conditioner, never use anything else on my hair. I don't even use gels or hairspray, and never have done. The only things that I can put it down to are these: 1) I use a latex foam pillow and have done since I was young. Does my head sweat at night and create some sort of irritation? If it does, I can do nothing about it as feathers are banned from my house due to asthma. 2) I once had my head shaved at the back rather than cut: it did sting as it was being done. Did this set up an irritation? 3) I remember having the dry, peeling eyelids as a child of about 14. Was this the start of the psoriasis, even though I was not aware of it at the time on my scalp? I will probably never kn
                ow what set it off originally. I will probably never be completely free from the problem. Stress can sometimes set it off. But at least now I know what it is. At least now I can alleviate the symptoms before they drive me mad. And the coup de gras is that I no longer have flakes of skin as big as finger nails sitting on my collar! Thank God for Betnovate!

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                  04.09.2001 19:23
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                  I consider myself lucky that I do not suffer from the skin disease psoriasis myself, but I know two people who do. One has it on his scalp, joints and back and my friend has it over her entire body including her face. Although I cannot begin to imagine what it must be like to have the constant itch and to try all the various remedies (none of which seem to work long-term), I can see the effects this disease has had on their lives and on the people round them. The first noticed his symptoms nearly 30 years ago. He is now 55. He noticed it on his scalp and he hid it under his hair for quite some time, simply due to a lack of awareness. Over the years his psoriasis has actually gotten worse and he has done the circuit of all the remedies. He finds most relief in using Johnson & Johnson baby products but is too embarassed to tell anyone. He no longer tries any remedies because he feels that short-term relief will cost him long-term. He doesn't think that people are more understanding now than 30 years ago. Visiting people have on occasion refused to sit in a chair that he has sat in. Some have even refused to shake his hand. He has been rejected from a number of jobs that he has been overqualified for. His wife has to vacumn the house everyday just to keep up - something she finds hard now that she has arthritis. My other friend has suffered since she was a baby. She has to go to the hospital once a month for sunbed treatment. While the rest of us were talking about boys and dating and picturing our dream weddings, she was feeling down because she thought she would never get a boyfriend - she's 25 and has never been on a date despite being one of the nicest people I know. She prefers people to visit her in her house because she thinks that when she goes out, people are dying to get their vacumn cleaners out. Although more and more people are becoming aware of this skin disease, I still don
                  9;t think that enough is being done to promote awareness. I think that it's great to see opinions on this on the dooyoo site as it brings home to people an idea of what this disease entails.

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                    04.06.2001 21:46
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                    Two years ago I had no idea what psoriasis was. It was something that you heard talked about but like all normal people you always assume that it will be someone else that the condition will affect. However as a result of an increase in my workload my skin began to show indicators of this condition in the form of white patches on my knees and elbows. Naturally concerned I booked an appointment with my GP and once in her office was immediately told that I was suffering from psoriasis. She sat me down and talked me through what might be causing it and identified the increased workload as the most likely suspect. Asking what she could prescribe for the problem she mentioned a steroid based cream which I was not particularly happy to use, as I did not want any more chemicals being absorbed by my body in excess of the already heavy dosages of tablets I have to take for my epilepsy. However I chose to accept the initial prescription whilst I looked for an alternative treatment. My extended series of searches provided me with a vast array of information that I managed to whittle down to three products. Tea Tree Oil – The first alternative I tried. Unfortunately this did not generate the results I hoped as I still had small patches after a period of regular use. Evening Primrose Oil – This disagreed with my tablets that I am on for epilepsy (Sodium Valproate and Phenytoin) Goat’s Milk Cream – Of the three this generated the best results clearing all the patches within 14 days. There is an alternative to steroid based creams and the items above are just three of them. Give them a go you might find them useful.

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                      30.05.2001 23:59
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                      Do you remember The Singing Detective? It was a musical drama from the late 80's, starring Michael Gambon. He had psoriasis really badly, and was confined to his hospital bed, where he had lots of bizarre fantasies! The guy who wrote that programme, Dennis Potter, also suffered from psoriasis. He died a few years ago from cancer, but for us psoriasis sufferers it's the flaky face of the Singing Detective that we will remember him by the most. I have had psoriasis since I was a teenager - not til I saw that programme did I realise how lucky I was, as I only have it in bits and pieces. Like the others who have written here - I had it at it's very worst during university stress. My worst psoriasis memory is waking up one morning with flu, in my halls of residence. I had slept so badly I was stuck to the sheets. YUK!!! I have tried four ways of clearing my psoriasis. I only get it on my head, my trunk (nice euphemism) and occasionally a wee bit on my shin. 1. Alphosyl cream ----------------- This stuff is vile. It's yellow, it stinks, and it sits on top of your skin all day, making you uncomfortable and self conscious. I tried this as a teenager and (typical!) gave up very quickly as the results weren't very miraculous. 2. Dithranol cream ------------------ Oh my god - this stuff could take paint off your front door. Even at it's lowest strength, doctors recommend you only leave it on for an hour before washing it off. It worked in 24 hours on me - the scaly bits vanished - but left red, sunburn-like marks behind. A bit painful. This cream is colourless and doesn't smell. 3. Dovonex cream ---------------- This is the latest cream available, and it's based on vitamin e (apparently). It's the best I've tried but takes loads of patience, as it takes weeks to clear the scaly patches. It doesn't stink and has no colour, but y
                      ou have to apply it twice daily for best results. Also, unlike Dithranol, it feels calm and gentle on your skin. But I'm very impatient and sadly, I gave up on this one too. 4. Sunbeds ----------- Aha! My favourite one. I tried the sunbeds for the first time as a teenager, and was overjoyed that not only did I get a groovy tan - my psoriasis vanished away like melting snow. A Miracle! Well, not really. It's up to you to assess the benfits versus the risk - but since all the evidence has come out about sunbed use and melanoma, I have to say I've stayed clear of them (most of the time!) It's interesting to note that sunbeds warm you up and relax you too - could this 'stress relieving' aspect play a part in getting rid of psoriasis? I'll bet that it does. The alternative: ---------------- I am thirty now, and I have totally given up using any kind of prescription treatment for my psoriasis. I've basically decided that I do not want to 'wage war' on my own body. I'll never be clear of the scaly patches, but it isn't such a priority any more - and since I took that decision, the psoriasis has eased off just a wee bit, all on it's own. There are three things that I have learned have an immediate, bad effect on my skin. 1. Caffeine. I have now totally given up caffeine in all its forms. DOH! This has been tough, as I was dependent on it all my adult life. I drink peppermint tea now, and occasionally a decaf latte (can't give up Starbucks!). Caffeine is so bad for you!I realise now that so many of my health niggles were caused by it. It can cause nervousness, irritabliity and stomach bloating to name but a few charming symptoms. I geniunely believe that my psoriasis has improved since I gave up caffeine - it's a long term thing though. Gotta have patience! 2. Alcohol. Boo hoo! Alcohol goes
                      straight to those scales and makes them RED and ITCHY!! Which is a shame for those of us who like to knock back a pint or ten at the end of a hard week. Again - this is where adult judgement comes into play. I would never tell somebody to stop drinking - psoriasis or not. But I do know that the morning after a heavy night, my skin has reverted back to those hellish student days. I wonder if all that student psoriasis has a direct alcohol link? I'm sure mine did. Anyway - I still enjoy plenty of nights out. I just wear a big sweater the next day and make sure I get plenty of... ... 3. Sleep. This is the one, single most important factor in managing my skin problems. One bad night and it's all over for me. If I get a nice long lie, my skin feels lovely as I wake. Obviously, in stressful times we don't sleep so well. So that lovely stress/ lack of sleep combo can play hell with your psoriasis. One very helpful doctor told me to 'avoid stress'!!!!!!!! Unfortunately he was unable to sort out my job, family, money and relationship hassles with a prescription, so there's not much I can do there! It is possible, however, to learn what calms your body down, and then make time to do those things. I find that surfing the net at night keeps me awake for hours, so I have to be really disciplined and shut down the computer by ten or so. Never feel guilty for unplugging your phone by the way - if that's the only way you can get a relaxing, long sleep then do it. Your friends should understand! Ok, now I am going to write about something really personal - feel free to hide behind the sofa, or wherever! I have found that my psoriasis has been a problem for boyfriends over the years. Back in my student days, one particular charmer basically put his jacket on and left as soon as he saw it. This upset me a lot, and I think the resultant stress probably
                      made my skin even worse. I have often thought - how would I react if a guy I liked turned out to have some disfiguring skin condition? Would I ignore it, and be supportive? Or... would it put me off him? My current boyfriend (bless him!) says he doesn't even notice it. Well, he is stretching the truth a bit there I think. When he first saw it, he was not repulsed at all, he was fascinated, and asked loads of questions about it. He is always very proud when the patches aren't that bad, as I have trained him to believe that if he is nice to me then my skin will get better!!!! It's not a complete lie - in fact, it's kind of true. I can't suggest to you to 'get a supportive partner', but I can urge anybody out there who has a partner with psoriasis, or any stress related complaint, to be as patient and kind as you can. It's worth it! Good luck people with your flaky bits - let's hope for more sunshine!

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                        02.04.2001 20:59
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                        They say your body changes every 7 years, I don't know who says that but if its true then I've only three years to go with this irritating skin disorder! Whilst pregnant with my second child, and potty training my then 2 and a half year old I noticed a small patch on my elbow had become rough and dry, as it got more itchy I visited the Doctors, a wart he said and tried to freeze it off, no joy. It got as large as a 50p coin, then an identical patch appeared on the other elbow. Eventually the Doc recognised it as psoriasis, and then began the trials of various creams and applications. (I've heard that the patches usually appear virtually symmetrically on the body, seems to be that way in my case) A search on the internet brought thousands of miracle claiming cures, and a Usenet group populated by hundreds of sufferers, some of which are covered in this skin condition. Some claimed rigourous diets including wheat free, citrus free, alcohol free, many different combinations. Stress is also identified and looking back to 4 years ago, I guess my stress levels were touching the ceiling, finacially, domestically and emotionally. I suffer only mildly from this condition, just knees and elbows, but enough to stop me swimmimg without being self concious) Many miracle cures are to be found online, from rubbibg banana peel on your skin to colonic irrigation ( there's only so far I could go!!) Some information suggests that psoriasis is an auto immune disease, similar to diabetes, which is hereditary. It seems to me the pharmaceutical companies would lose a fortune if they were to find a cure for this. A strong statement I know, but think about it... Anyway after much investigation and numerous creams including Exorex - didn't work, Psorigon(which cleared it bit was taken off the market due to high level of steroids I believe ) and Dovonex - which made it worse, I decided on the following course of supplements afte
                        r an interesting chat to a lady in Holland And Barratts Evening Primrose Oil EPA Fish Oil Concentrate Vitamin B12 Folic Acid Beta Carotene St. Johns Wort Zinc All taken daily. Slowly but surely it's clearing. Should I miss a day - I know about it, it itches like mad. I know that what works for one may not work for someone else in this situation, I just hope it helps a fellow sufferer. Should anyone require my exact dosages mail me.

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                          01.03.2001 05:44
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                          Approximately one million people in Great Britain suffer from this skin disorder - and I'm one of them. I do not have an extreme case of psoriasis, but one that is irritating and occasionally disfiguring. I read a great opinion on this subject and wondered if I should bother to put in my two-pennies worth; I decided to do so because I have almost vanquished this inconvenient problem from my life, not by clinical means but by natural ones. There are at least five different forms of psoriasis: Psoriasis annularis, palmaris, diffusa, punctate and Universalis. All of these are recurrent diseases that result in itchy inflammation, plaques of silvery scales and, quite often, lesions. Mainstream medicine has never decided on an underlying cause of psoriasis, although it seems to be understood that stress, liver problems, fungal infections and metabolism are some how involved. My psoriasis (universalis) is inherited, but began (as so many's do) with a bout of stress when I was at university. I suffer from a build up of scales on my scalp, my arms and legs, and occasionally my face (this is of course the hardest to bear, as many people like to stare at oddities). Clinical treatments for psoriasis are numerous and often expensive (if not on pocket, then on your health). The starting point for most patients is coal tar, (available in many forms, the most popular being the shampoo Polytar). The next treatment on the list is cortisone, which will thin your skin incredibly quickly, leaving it fragile and usually dry. The third suggestion given by most doctors is to buy a sun bed (as I said, expensive treatment!), but this is usually offered as an additional option to be used with either one or both of the above prescriptions. I followed this course of treatment for a few years; The psoriasis died down for a while, but even the doctors say that the effects of tar and cortisone are only temporary, and so my psoriasis came back,
                          and worse than before. While I was pregnant my psoriasis got even more severe, and it was then that I decided that I would look into natural remedies for my condition. I know of a lot of people who sing the praises of acupuncture: Having a small aversion to needles, I did not go down that path, so I can't really write about it. I started with homeopathy, the practice of treating like with like: Homeopathy offers quite a few reasons for the origins of psoriasis, but a good homeopath will always insist on a personal consultation before they will give you a diagnosis. The underlying general treatment will be diet: The main dietary guidelines are: *Avoid * pork chocolate cheese eggs cows milk butter yogurt processed foods white flour, white sugar and other such refined substances cakes biscuits bread coffee citrus fruit red wine excess alcohol malt vinegar yeast extracts smoked or pickled food animal fats *Allowed* raw vegetables (except tomatoes and peppers) onions, leeks and potatoes are beneficial fish fruit (except citrus) grapes and grape juice are recommended pulse and whole grains chicken (not too often) Other general advice: zinc supplements (or for external treatment try Sudocrem) vitamin D vitamin B kelp evening primrose oil cod liver oil raw cucumber pieces externally, juice internally raw potato juice internally Dead Sea mineral salts hay flower baths Austrian mud baths the herbal preparation symphosan viola tricolor echinacea ointment I would also recommend Kava-Kava for the treatment of stress, if you feel that this is an underlying problem of your psoriasis. I found my treatment by homeopathy useful (75% of my psoriasis disappeared), but I continued searching for a definitive cure. It is excepted that the sun
                          is beneficial to this disorder (hence the usage of vitamin D), and another form of therapy is sun-ray therapy. This is a treatment I considered but never used. For further information I suggest you contact the Alternative Psoriasis Centre in London. I then read a report in a newspaper about the ongoing research into psoriasis being fungal based and an off-shoot of yeast infections. After buying a couple of books and reading the symptoms, I diagnosed myself as having candida albicans. This is a condition where the natural yeast in your body (in the digestive system), are no longer confined and become an infestation. Symptoms are: Depression, anxiety, acne, digestive problems, allergies, migraines, cystitis, thrush and other fungal infections. The causes of candida are numerous: Use of antibiotics, contraceptive pill, steroids, diabetes, sugar and yeast based foods. The solution to this infestation is again a diet; Main dos and donts are as previous for the general homeopathic diet, plus a few notable differences. With the regime I followed, I removed all fungus and yeast related substances from my diet. Therefore: *Avoid* mushrooms in any shape of form. all multi vitamins unless they state that they are yeast free vitamin B-complex unless stated they are yeast free brewer's yeast fruit (to begin with) all alcohol all meat except chicken and fish all cheeses all malted products all vinegars all foods containing monosodium glutamate (that means no more Chinese take-aways) soya sauce raw egg white fried foods black tea antibiotics unless really necessary Supplement your diet, otherwise you may be missing some vital vitamins and minerals: Garlic capsules or fresh garlic (all of the onion family are useful for getting your immune system back on line), vitamin C (with bioflavonoids) vitamin B6 vitamin B12 folic acid calcium se
                          lenium zinc magnesium vitamin E vitamin A vitamin F (evening primrose oil) The best aid to ridding your body of this problem is lactobacillus acidophilus; This can be found in Yakult and other such products available at the supermarket. They are rather expensive though, so a more economical approach is to by the tablets from a health shop; Most lines provide them but I found Solgar?s non-dairy Acidophilus plus (suitable for vegans - not that I an one), the most efficient (remember to keep them in the fridge). Once you feel you have mastered the situation and the symptoms are disappearing, then try to eat more garlic, onions, leeks etc. to boost your immune system. If you feel that the problem has abated, then reintroduce foods that have been out of your diet, slowly and one by one, to see if you have a reaction to them. I kept to this diet for a good year. Yes, it was very hard, but like most things, when you see the benefits, you stick to it. My psoriasis has completely disappeared and I continue to supplement my diet with acidophilus plus to keep everything under control. I hope that this opinion is useful for fellow sufferers and I wish you all luck if you choose to try solving your psoriasis in this way.

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                            10.02.2001 00:49
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                            Psoriasis is an under rated skin condition that affects at least 1% of the nation, yet I see no box here for this embarrassing incurable condition.A Ahem, I stand corrected, thanks John Why am I so interested in this subject? Because I am one of that one percent. So did you wonder why it had taken so long for me to put my ugly mug on my profile? Because I really don’t appreciate having my photograph taken That is why I’ve got the funky hanky on my head too. Initially it appeared when I was 17 after a traumatic event in my life(I won’t go into details). Firstly fobbed off by my GP with scabies treatment I was pretty downhearted and depressed at thought that I could have done something to prevent it and not only that, I could have given it to other people. The treatment was painful and completely unnecessary. The symptoms continued for many months, and many more treatments were tried, all of which failed miserably, and as a last ditch effort I changed my doctor. After further consultation with the new doctor, the diagnosis was quite different. It was psoriasis, common and unfortunately not curable, but treatable. So what exactly is psoriasis? It is the sebaceous glands in the dermis overworking. A normal persons skin renews itself at a rate of around every 52 days, but in a person with psoriasis this is accelerated, resulting in scale formation in a much faster timescale, approximately 2-5 days. What causes it? There is a difference of opinion on this one, some consultants say that it is a defective gene, others that it can follow a throat infection, and others that it can occur after a traumatic experience, none are one hundred percent certain, but it can certainly run in families, although no-one in my family has ever had it, my eldest is starting to have tell tale patches on her body. You say that there is no cure, can anything be done to alleviate i
                            t? The most common treatments seem obscure, but they do work (for a little while anyway). From the information given to me by my dermatologist sunlight is a great asset, however living in the UK, it is not something we see that often LOL. Other treatments include coal tar, yes, you read it right. A pretty yucky smelling concoction, and very black and glutinous, a damn nightmare to get off clothes too. Ultra violet treatment, in which the harmful rays are excluded, but you still get a great suntan, shame it was my turm in the middle of summer LOL. The combination of out patient treatment UV lights, tar baths and tar lotion actually saw my entire body clear of this cursed complaint for 6 weeks last year, but as the stress builds, the psoriasis worsens, and within a few weeks I was in a worse state than I had ever been. The last resort treatment is an injection of Methotrexate, a nasty drug. Absolutely unsuitable for women of childbearing age, it has previously been used in the successful treatment of ectopic pregnancies, and can in the extreme cause liver failure over a large period of use. It is therefore used sparingly. Are there any side effects to the normal treatment? Nothing major, the coal tar is photosensitive,(makes you turn orange in real sunlight, and is alleged to be carcenagenic), and you obviously tan quickly, to a fair skinned person that is not too pleasant, in essence you can’t go out on a sunny day, as you are guaranteed to burn, even with sleeves and trousers. It positively stinks like old tyres, and the body stocking with matching sleeves and tights is none too attractive either. How does it affect everyday life? It is very difficult to disguise the flaky trail that a sufferer is guaranteed to leave behind. Not only is it incredibly irritating, and can be quite painful in colder weather, it is somewhat of a stigma and there are certain lines of employment that consequently are tota
                            lly out of the question. I cannot work with chemicals, as any irritation grows to massive proportions. Would you buy really food from someone with obviously flaky skin? I thought not. It is difficult not to scratch, even with the miracles of anti histamine drugs. Fortunately in my previous line of work, children in my care seemed almost oblivious to it, as when a child asked what was the matter with my hands as long as they were reassured that they could not catch it they simply treated me like any other Play worker, and didn’t ask again. However, adults unfortunately do not seem to be as forgiving. Personally, I would rather be asked then stared at. So is it contagious? Absolutely not (Try telling that to some people though!) Are there any factors that trigger a flare up? Plenty actually, stress and depression is a major contributor, even with anti-depressants it cannot be warded off. Are there any other health complications as a result of psoriasis? Unfortunately there are, Psoriatic arthritis, where the scales grow in the joints in your body, causing painful aches and seizing of the joints, knees, elbow hips etc. Again very little can be done, but I try to avoid too much dairy produce when my joints are playing up, and try to keep the affected areas as warm as possible. It also makes sufferers quite susceptible to other skin infections, as even with constant moisturising the scales crack and came become infected, foliculitis (sp) is a notorious complaint. Is it localised to one place? I wish!! On my scalp, up my nose, all over my body, and even in my ears, it is more than a pain in the bum.(LOL, scuse the terrible pun, but there too;-). What about alternative therapies and treatment? I have tried countless pills and potions, even taken aromatherapy classes in an effort to “help myself”, like so many treatments it often does work, briefly
                            , and then returns full force and often worse. Treatments include Aloe vera,that has to be most gross tasting concoction on this planet. While I was in Jamaica many years ago I was introduced to this spiky plant, which can be split open and spread on the affected areas, this treatment is sticky, and didn't work for my psoriasis, but it did do wonders for my sunburn. Bach rescue remedy, alleged to relieve stress, didn't work either. Aromatherapy oils, worked briefly, but never again. Homeopathy, cost a fortune, and still no joy. What have you found that makes you more comfortable? Knowing that I am not the only one. I would be very surprised if there were not several dooyooers that either have the condition or know of someone who has it. Keeping fingernails short, as this minimises the damage caused by constant scratching. I find that non -biological washing powder is less aggravating, as are pure cotton clothes. Baths rather than showers,and not too hot at that, the treatment requires entire submersion of the affected area. Polytar shampoo or Alphosyl shampoo and conditioner, smells lousy, but it is very successful at loosening the scales on the head and can reduce the irritability quickly. It is actually a really good treatment and does provide really shiny manageable hair. Coal tar soap and coal tar emollient, stings a bit to start, but it is fairly effective as an instant pain reliever. A good moisturiser is essential, and there is no need to spend a fortune on it either, aqueous cream is great and has a very cooling and soothing effect, which can be added to the bath or simply slapped on all over. Less attention from others regarding this common complaint, after all it is not them that have to go through the daily routine of moisturising, looking like a joint of beef, being stared at and the like. Is there anything that I can do to help anyo
                            ne else suffering from Psoriasis? Yes, just treat us like anyone else, stare if you must, but please remember, we certainly didn’t chose this affliction, if you are that interested, then ask, the psoriatic person won’t bite your head off, and will probably be quite relieved that you did. There are associations both online and offline providing information. “Organisation: Psoriasis Association Contact: Mrs Gladys Edwards Phone: 01604 711129 Fax: 01604 792894 E-Mail: mail@psoriasis.demon.co.uk Address: Milton House 7 Milton Street NORTHAMPTON Northamptonshire NW2 7JS” Online it is far easier to use a search engine as there are literally hundreds of sites out there raging from support groups to documented cases and personal investigations. In conclusion, whilst this is not the nicest affliction in the world, it is certainly not the worst, life can and does go on, with or without stares. It is something that you can live with.

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