Im new to this

[Sophiedophie]

Hi everyone

Im new to the forum. Just joined last night. I was on twitter and someone suggested the Psoriasis club to me.

I have had psoriasis almost 33 years, since I was a baby. I have been hospitalized many times with it. I can be in hospital anything from 3 weeks to 2 months at a time. I have just been informed by my dermatologist that I need to be hospitalized again before end of july. I have a young daughter so I am worried about leaving her this time as the last time I was in hospital was in 2007 before she was born.

My flare ups are getting worse and affecting my worklife, home life and self esteem. I never buy tops with short sleeves or short trousers as my limbs are particularly bad. I was put on Methotrexate last November and had serious side effects to it so am no longer on it. For the time being I am using Liquid parafin 50:50 and tar pomade to try and control it until I go back into hospital.

Even though I have had psoriasis for so long I have never come to terms with it. I just hope some day doctors find a cure to help people living with it.

If anyone can give me advice on new treatments, nutrition etc I will be very grateful. Many thanks [/color]

[Caroline]

Hello Sophie, must be your real name. :-)
Welcome to the forum.
Hope you will have a nice stay here.

Well already lots have been written about all kinds of treatments over here. Everyone has its own treatment more or less sorted out, but no one is totally satisfied of course, for that our disease is too complex.

Currently I am writing a piece on dimethylfumarates in one of the forum parts on treatment. It is a translation of detailed information of a Dutch forum.
I am using the stuff and it works great for me. One or two others on the forum are using fumaderm, also containing fumarates.

The forum is not totally serious, so beware not to get lost in the wrong thread.

Caroline

[Hanna]

Hello,

Sorry to hear about your skin not behaving as it should.
Out of curiosity have you taken other oral dugs before besides methotrexate? I found cyclosporine to be a good drug for getting a break, it always seems work quick but can make you feel rough for a while. Also ave you spoken with your derm regarding biologics? 
Being In Belfast do you get NHS? 

Try not to stress too much as this won't help your skin much (easier said than done I know) 

[KyPrincess]

Hello Sophie! Welcome to the forum! I am sorry that you having a diffult time. Hope you get some relief soon.

[Fred]

The forum is not totally serious, so beware not to get lost in the wrong thread.

Caroline

I should point out Caroline is talking about the Off Topic Boards and not the Health Boards, and she is probably referring to me

Hello Sophie and you will find us all are friendly bunch here and there is always someone to listen. Regarding the new treatments have a look at this thread about the Biological treatments: Biological Treatments For Psoriasis

As for nutrition these threads may be of interest:
The anti-inflamatory food pyramid
Watch out for the Scams!

Just join in and ask away, and if you do go to the Off Topic boards, I'm the sensible one in there.

Regards.

Fred.

[Caroline]

The forum is not totally serious, so beware not to get lost in the wrong thread.

Caroline

Just join in and ask away, and if you do go to the Off Topic boards, I'm the sensible one in there.

Regards.

Fred.

The last is Fred's usual statement and is completely for his own responsability.

[Sophiedophie]

Thanks everyone for your advice.
The treatments I have been using lately are Tar pomade, Liquid parafin 50:50, Dovebet and dovonex. I was on oral steriods last year but they never helped me. The methotrexate made my lymph nodes swell in my neck and back of my head. These lumps are still there and I am getting quite worried about them now. I have also tried diprosalic, exorex as well as ultraviolet light treatments etc but the flare up always come back. The psoriasis is now on my face and Aveno makes it very raw when I use it. I also use the usual Polytar and T-Gel for my hair.

I hate, hate, hate my skin. I cant wear short sleeves,nice skirts or dresses. I avoid social occassions at all costs and I have found myself distancing myself from my friends etc as I cant even face going out for nights out. Everyday I face a battle with what I am going to wear and how I can hide my skin. I don't even like my own family seeing my skin. My husband tries to reassure me but no-one can fully understand how we psoriasis suffers feel inside. I was bullied throughout school for it and this has stuck with me. I would love to tell those bullies how messed up they made me feel. I feel people look at my skin like I am unsanitary because it looks so dirty and flakey. People's ignorance can make me feel very depressed. This year in particular my skin has really irritated me. I have finally had enough of it. Wish I could have a skin transplant!!!

[Fred]

I hate, hate, hate my skin. I cant wear short sleeves,nice skirts or dresses. I avoid social occassions at all costs and I have found myself distancing myself from my friends etc as I cant even face going out for nights out. Everyday I face a battle with what I am going to wear and how I can hide my skin. I don't even like my own family seeing my skin. My husband tries to reassure me but no-one can fully understand how we psoriasis suffers feel inside. I was bullied throughout school for it and this has stuck with me. I would love to tell those bullies how messed up they made me feel. I feel people look at my skin like I am unsanitary because it looks so dirty and flakey. People's ignorance can make me feel very depressed. This year in particular my skin has really irritated me. I have finally had enough of it. Wish I could have a skin transplant!!!

Don't hate your skin. I know deep down you do, but you must try to learn to live with it. there is no cure but there are things that can help you live with it. Hating your skin or yourself is not a good move as you need to keep a positive attitude. Try to look on the positive side of things, you have a good husband and no he can't fully understand and never will, but having his support will go a long way.

Bullies and people who look at you in disgust are not worth even thinking about, It's their loss if they don't have a life and have to spend their time picking on others or staring. I can think of much better things in my life to do than being that type of person.

Try exposing your skin or talking to your friends and family if they are genuine they will want to help. If you’re not sure about exposing your skin, use long sleeved shirts with the arms rolled up, you can always pull them down quick. Same applies to trouser legs. If you have long hair tie it back with a scrunchie, when someone comes nearby let your hair down. For short hair wear a sun hat to cover your scalp and take it off when no one’s around.

Talk about it it's not contagious so no one can catch it from you, in fact you're more likely to catch things like colds from them. tell friends and family to look at some of the threads on this forum and get themselves educated about what it is and how it makes people feel. If they are not interested then they are not worth worrying about.

I can't see you but you sound a nice enough person to me, and it wouldn't bother me what you look like.

[Sophiedophie]

Thanks Fred for your kind words.
I just have some off days and then some good days. When my skin is bad I tend to wear black clothing and when its good I wear colourful clothing, I think this reflects my moods .

I feel better for being able to talk to people on here who are going through the same thing.

I shouldnt let Psoriasis be the be all and end all of my life. Il keep trying to think positive. I am goign into hospital before the end of the month and I actually enjoy staying in the wards as you always end up making good friendships as the patients are all there for the same reason.

Il keep my chin up and keep smiling.

Thanks again

[Troll]

Hello