Psoriasis

mancgirl hi!

I had have psoriasis all my life. My father had it all over his body when he lost a leg in the war, and he was always covered with it everywhere except his face.

My brother and I inherited it from him.

Doctors say there is no evidence to prove it is hereditary
I say Bullshit

I have it now in my head and in my ears, on my elbows and in the small of my back.

I have been covered in it when I have been stressed. When my husband left us I had it everywhere and had to go to the hospital three times per week for PUVA treatment. You have to literally be covered in the rash to qualify. they do it on a percentage basis.

I've had two lots of that treatment and it clears it up completely for about two years.. and then it slips back.

I'm content these days so I manage what I have with 'Betnovate' cream and 'Betnovate' scalp application.

In the past I have tried anything I could get my hands on including eczema cream for dogs which made me smell like a ferret

I have used Coal tar shampoo in my head without much success although the shampoo was good for the hair, but it leaves that certain smell you know?

I try to use as little as possible of the cream since it is a steroid, but step it up when odd spots appear here and there. In between I use soft paraffin wax as prescribed for when the scales become flaky and bleeding.

Psoriasis is like something that lives within you, alongside you and every now and then gives you a poke to emind w you who is the boss.

I have heard that if you suffer with this it is linked to the respiratory system and I have had bronchitis even though I don't smoke. If I get tonsilitis my doctor puts me straight onto the strongest antibiotics as it can trigger off the rash.

Good luck !

I have had scalp psoriasis for a few years now, and also get it in my ears. For the last five years I've been taking prednisolone (steroids) for an unrelated condition and that has mercifully kept the psoriasis at bay. However, I've been gradually reducing the steroid dose and the psoriasis has been gradually getting worse. Now that I'm down to 1mg pred, and expecting to give it up altogether next week, I've got the most horrendous psoriasis flare-up - the price I'm paying for not feeding my body lots of steroids. It's not just rashes, but sticky, weeping rashes, so that every day I'm having to wash pillow cases where my ears have oozed a pale yellow sticky liquid all over them. I've had to buy quilted pillow protectors and yes, they get washed most days too. Now I've found that the same sticky rashes are appearing in other places too, so that my clothing is sticking to them .
I have a dermatologist appointment, but not for another 3.5 weeks. In the meantime if anyone's got any suggestions on how to deal with this I'd be so grateful. It's really getting me down now.

It's a rotten condition, DD1 has it badly at times, inherited through genes (of course it's genetic.) Coal tar soap helps for the hands, but if you have it badly, almost nothing helps ( maybe sunshine) and you have to watch out for dangerous cellulitis, because of the cracks in the skin.You have my sympathy.

Well I think I'm fortunate not to have it on my face at least. Always in my ears - only the right one for some reason - but it mirrors on my body. e.g. Both elbows and both lower legs in the same places. I do have it on my thighs but can cover them as my days of wearing mini skirts long gone! It does get me down in summer when I want to wear shorts or dresses but as I'm otherwise very healthy I'm thankful for that. I know it's not a life threatening condition but blooming heck - it can get to you! I have two ds's who I've been worried about passing it down to. Fortunately, so far so good. Now we have a beautiful 4 month old grandson and I'm praying I'm not going to pass it on to him. Anyway, there's worse things in life so I do sometimes wear shorts and dresses (spend a lot of time in Spain ) so I think b*****ks to it - get on with it!

rosesarered - the sun doesn't work any more. It used to! In Spain there is an ointment called Decloban. When I asked my gp about it she said it was lethal and not licensed in the UK. I have used it and it does work but wouldn't use it long term.

Psoriasis is an auto immune condition which can indeed run in families along with IBS, asthma, eczema and UC. DH has asthma, eczema, UC and we initially heaved a huge sigh of relief that none of our DC seemed to be affected. Spoke too soon.
Our DD (33) has Psoriatic Arthritis which is a particularly nasty aggressive form of arthritis like Rheumatoid and can necessitate joint replacements as young as your 30's or 40's.
Fortunately she was accepted on a 5 year drug trial at a major London hospital of an antibody therapy which lowers her immune system. She is 3/5 of the way through and her psoriasis disappeared almost immediately and the arthritis has gradually improved to the point where she can walk, cycle, fly long haul,without pain and it has transformed her life. The 2 big buts are that she is more susceptible to infection and it means NO BABIES. What will happen when she comes off is anybody's guess, fortunately she is closely monitored because there is also possibly a slightly increased risk of certain cancers. Before she went on to the trial she cut out wheat and dairy from her diet and gained some relief, but it was only partial. Likewise various creams helped a little, some of the time, but never made any real difference. As with all autoimmune diseases though, STRESS makes things WORSE so meditation , yoga, anything to alleviate stress can certainly do no harm.

My mother got psoriasis for the first time when my father was waiting to have his aortic aneurism repaired. After it all went horribly wrong and he died her psoriasis cleared up practically overnight. It had been caused by the stress of waiting months for his operation.

I have to say I have never had it so bad that I have been hospitalised or had some of the "drastic " treatments stated on here. It is just very obvious being all over my legs and I am quite conscious of it. Think I need to look into some cover up makeup! I'm not sure if mine is hereditary or caused by stress. Probably a combination of both. The only time I have been totally clear of it since it appeared at 17 is both times I've been pregnant! I know it probably shouldn't matter at nearly 65 but it damn well does!

I've had it all my life,spent weeks in hospital as a child having sunray treatment and special baths.it seems as I've aged it's got much better.Worse places is ears elbows and knees.

Alea I was so sad reading your account of what your poor DD has been through. It is truly a terrible condition, and while some of us suffer the itching, the redness and the plaques, these problems pale into insignificance against the horrific form your DD's psoriasis takes. My heart really goes out to her; what a terrible sacrifice to be unable to become a mother because of her condition and treatment. for you and for your DD.

mancgirl, if I were you I would wear my shorts with pride. I see many people out and about with that familiar rash while on holiday.

Sometimes I ask them is that PS and we start up a conversation about it. It can become an ice-breaker.

You can't get rid of it, so embrace the bloody thing

You're right Nonnie! Shorts on as I type I go to a gym and when I saw a girl in my class with it I did exactly that. Struck up a conversation about it and now we are friends. Alea, after reading your post I realise how lucky I have been. I think the condition needs to be spoken about more and more research into the treatment of it. However, I was told as it's not life threatening it doesn't get much funding. Might not be life threatening but clearly life altering.

Thank you indinana I admit I cried when I heard her diagnosis, but she is literally the most positive upbeat person you could imagine. She flies round the world on business without a grumble (loves it, they do get to go Business Class, so flatbed) has a demanding career, non-stop at weekends whether at the allotment, wine bar, entertaining her many friends and is currently being the most wonderful support to her sister who had her first baby 3 weeks ago,helping where she can, taking meals round and just being there now that SIL has gone back to work. The morning after DGS was born she was at the hospital at 7.30 on her way to work with tasty little delicacies from Carluccio's as they hadn't eaten properly for over 36 hours. She also took the afternoon off work to cuddle her new "neph" so that his traumatised/exhausted parents could sleep !! At her wedding reception DH said her name describes how she" lights up the room" and she is truly a happy soul who also kept in touch and kept me sane during the 3 days DD was in labour and I was frantic with worry. Sorry to go on but so many people are less fortunate with a DD and we don't often get to hear the good things. Thank you for your good wishes and

I used to work nights with a man who had this condition so bad on his face that he ended up having treatment for skin cancer. This resulted in him going bald and it changed the colour of his skin to white in parts (he was black).

We were kindred spirits in the end, and all over a rash. I remember the first time I met him I asked if it was PS and he said yes, but not many people knew that. It always takes a fellow sufferer to indentify it.

He told me he preferred to stay in the house because people pointed at him in the street and shops. One time he took his child to Maccy Dees and someone asked him if it were contagious.

Alea your daughter sounds a very kind and positive sort. Clearly she just gets on with life and enjoys it. I admire her greatly - good for her.