Hello ! ... please be gentle

[Very Psor]

Hello there,

Before I start, I'd like to express my sheer relief at the stories I've been reading on here of fellow psoriasis sufferers and their experiences; not that I feel good about other people suffering, just that it is *so* good not to feel so isolated with this very lonely condition.

I've had psoriasis from a very young age, but nothing more dramatic than a scaly scalp and a bit of itching behind the ears.

Five years ago it flared up and I had it all over my scalp and on my arms and body ... again, it wasn't particularly dramatic - just redness and itching - and coal tar shampoo plus some gooey medicated oinkment (the name of which escapes me) sorted it out.

This time, it has kindly enveloped my whole body (bar my face, thankfully) in painful redness and plaques, and has decided for extra measure to infect my right shin. It has been dramatic and life-changing, and has greatly reduced my quality of life. I can get no relief from the pain and everything I do causes pain, ie standing up, sitting down, walking, going to the Ladies, getting dressed, getting undressed and so on. I am here because I have reached a level of desperation ... not being one to generally feel sorry for myself, I have twice in a week burst into tears from the unremitting pain and the futility of the several medications I've tried, none of which have worked.

I have an appointment with a dermatologist next Friday, which I am hoping (praying!) will help ... so far I have seen 6 doctors and am on my fourth dose of antibiotics since 3 December 2013. The steroid creams are too painful to use, and I had an allergic reaction to one of the bath lotions I was prescribed. I have also tried two different (prescribed) antihistamines, neither of which have worked.

I'm sorry to whinge, but was hoping there might be someone out there who could maybe identify with what I am going through, who might be able to suggest something ... I have wonderful supportive friends, but don't know anyone who has this condition to the degree that I am experiencing it. Any advice would be greatly appreciated ...................... thanks x

[jiml]

Well first let me say to this forum. I think you have come to the right place for advice and support, this is a small friendly group that welcomes psoriasis sufferers and I think we all recognise the feelings and desperation you are feeling right now.
You have taken a good first step arranging a visit to the dermatologist, and reading through the posts on here will give you some things to ask your dermatologist.
I don't know if you are in the UK or elsewhere but it depends where you are which treatments you will be offered or are available
I had many years of suffering with about 60% coverage and have been through most of the creams and lotions which only treated the skin and as soon as I stopped back it came,
The treatment I am on is superb but may not be available to you.

I would read through the prescribed treatment threads and gain knowledge before your meeting you can then go into it from a position of knowledge.

This is a great place to come as you will find it easy to navigate and there is usually a sympathetic ear who will be pleased to offer support .
Come back often and keep your chin up, there is a treatment out there that will work for you. I hope you find it soon

[Very Psor]

Hi, thank you for your lovely message. I am based in the UK (West Midlands), and so far two of the doctors have suggested I might need 'light therapy', but that the dermatologist will decide on a course of action.

I'm glad you have found something that works ... if I come across anything positive or useful I will of course pass it on!

So far, I've found Grappa useful: tried it for the first time last night and had the best night's sleep in months! - not only did I manage an entire night of uninterrupted sleep, but when I woke up I wasn't in pain. This has changed as the day has gone on and I've had to get up and move about, but it was a marvellous feeling. Obviously (regrettably!) this cannot continue as main medication

Thanks again for your kind words. I can't imagine how you managed years with 60% coverage, when I've only had it for 2.5 months and am already finding it intolerable. At the moment I swing between trying to accept it, staying calm and being positive, then I go to feelings of frustration and futility. It doesn't help that I was in denial for so long; the first time I properly looked in the mirror and saw the extent of it, I got a massive shock. I jokingly refer to it as leprosy or elephant man-itis, on bad days I over-dramatise and call myself the Singing Detective - it helps me cope, but deep down I really am feeling desperate. Thank you for the advice

[Caroline]

Hello Very Psor,
Welcome to the forum.
You have a very high score, and when reading I see that you are having quite some problems.
Indeed, read through the forum and you will find a lot of possibilities that are still available for you.
To me it seems that you should go in the direction of the biological medication. One warning for MTX, try to avoid that is my advice.

Have a good time over here, there will be mostly be someone to answer possible questions or for kind of a chat in the Off Topic section.

Cheers,
Caroline

[jiml]

Hi again
Well light therapy used to work well for me. So it's well worth a go. Positive thinking is very important. It's difficult when you feel like a leper to try to be positive but I believe it to be the key. You have made a big step just coming here and putting your feelings in writing, nobody here is judgemental as we all have been there or are still suffering.
When you feel braver and need cheering up visit the off topic section where it is very light hearted, you will find Fred who runs this site will tell you he is the sensible one, don't believe him as I am the sensible one

[Very Psor]

Caroline, thank you ... I think the shocking thing for me is that it's happened so fast. I'm used to living with a mild form of it on my scalp, and a few spots on the arms. But this seemed to snowball pretty much overnight - and then got steadily worse each day. It went from absent-mindedly scratching my back and not really noticing what was happening (denying it) to that horrifying moment in front of the mirror. It's been a mind-shift, and has taught me not to take health for granted ... prior to this I have always been slim, fit and healthy; now I am a bloated, flock-wallpapered elephant!

Thanks for the advice, I did read some of your comments about MTX and will bear it in mind. I'm already finding this forum very useful x

Jiml I think you are right about positive thinking, I do try to stay positive (although some days are harder than others). It helps that one of my friends will say "how's your leprosy" as it always makes me laugh! - laughing of course is the best medicine! (Sorry for the cliche but it does work for me.) Your advice is very good, so I believe you when you say you are the sensible one

[Caroline]

Hello Very Psor,

Indeed it is really frustrating when it suddenly explodes, I had the same with my PsA, which also suddenly revealed itself.
But indeed also is the fact that you better can stay positive, it will keep your real friends with you, because that will happen, you will find out who are your best friends.
Remember that psoriasis is an auto immune disease that is connected to you total metabolism, it makes very good sense to keep a good eye on your diet.
Prevent animal fat's, burned peanuts and sharp food. Eat good and fresh food, lots of vegetables.
Also try to stay in movement, try doing sports and remain fit, you just will feel better.

About the off-topic section, don't let yourself be fooled, none of the guys is sensible there. Only us girls...

Caroline

[Fred]

Hello and to Psoriasis Club.

First of I will say you don't have to worry about us being gentle with you. I can assure you as you have probably already noticed that we are a friendly bunch. Should you find any different or have any problems on the forum just shout out and someone will help, it's the baddies that have to watch out as they are not welcome and get shown the door very quickly.

Second I will say all this talk about me being the sensible one is true, and you will find this out for yourself in [Group Specific] and whilst you are there as you mentioned Grappa is helping you may be interested in the [Group Specific] thread.

As for psoriasis, you are not alone and I will echo what the others have posted. Have a good look through the threads and arm yourself with as much information as you can before your appointment, and don't hesitate to shout out in existing or a new thread.

You mentioned antibiotics and antihistamines can I ask why you are being prescribed these ?

Regards.

Fred.

[Very Psor]

You're right about friends, I've had tremendous support from some in particular and yes, agree it sorts out the real ones. My main fear was starting a new job on 6 January where new colleagues might think it's contagious - I cover up my entire body, but it's all over my hands and I can't really wear gloves in the office! - only one colleague has asked about it (people are generally too polite to ask, I think), but I explained what it was while trying to cover my hands, and she put her hand on my arm to stop me. So a surprisingly sympathetic response.

I've started incorporating more fruit and vegetables into my diet, but the thought of doing anything active is difficult: when I arrive at work, get home from work, get back from going shopping etc, the backs of my thighs are torture - today it took me half an hour to sit down when I got back from the shops. I literally stood in the living room until the pain died down as I couldn't face sitting. I need to learn how to sit on my head

Very sensible advice re the diet, I hardly ever eat anything processed anyway but did need more fruit and have enjoyed that. You clearly are very sensible x

[Very Psor]

You're right about friends, I've had tremendous support from some in particular and yes, agree it sorts out the real ones. My main fear was starting a new job on 6 January where new colleagues might think it's contagious - I cover up my entire body, but it's all over my hands and I can't really wear gloves in the office! - only one colleague has asked about it (people are generally too polite to ask, I think), but I explained what it was while trying to cover my hands, and she put her hand on my arm to stop me. So a surprisingly sympathetic response.

I've started incorporating more fruit and vegetables into my diet, but the thought of doing anything active is difficult: when I arrive at work, get home from work, get back from going shopping etc, the backs of my thighs are torture - today it took me half an hour to sit down when I got back from the shops. I literally stood in the living room until the pain died down as I couldn't face sitting. I need to learn how to sit on my head

Very sensible advice re the diet, I hardly ever eat anything processed anyway but did need more fruit and have enjoyed that. You clearly are very sensible x