Jasmin says hi!

[Jazzibee]

Hi everyone! Hope you are all well 

So I am a 25 year old from London, and for three years ago i came up with a really small patch of psoriasis. At the time I didn't think anything of it. It went away (lived quite a healthy lifestyle etc).


This year i have come up with psoriasis quite badly- at first it was only on my elbows (plaque) and a think patch on my leg and lower back. I started using dovabet, but I also started getting guttate spots all over. Now it has spread to my face, scalp, arms, legs, back and is even on my...well yeah sorry for too much info!!

Currently having photothreapy three times a week but its still coming up so probably going on Cyclosporine  in a couple of months after the photothreapy (which is scary so any experiences would be appreciated!!)

I guess the reason I am posting here is that I am finding it difficult to come to terms with - I know there are so many worse things out there and I should consider myself lucky, but I can't help feeling very UNlucky - i just look around at all my friends, colleague, people on the tube, and wonder how come everyone else is fine and I've got psoriasis - i cant even really cover the scars on my face that well! I haven't always treated myself well, and I have been a smoker for years, so I guess I feel like it is my fault and i deserve it - none of my family have it and i just can't understand how has happened. I feel really sad but I am embarrassed to talk to much about it because I feel like my friends do not understand and think i am just being a self indulgent, vain, narcissist - does anyone else feel like this??

Any tips on how to come to terms with the fact I will be living with this forever, or any treatment suggests/ experience would be really appreciated  

thanks!!

[Fred]

Hello Jasmin   to Psoriasis Club.

First off it's not your fault. Psoriasis can suddenly strike anyone at any time of their life, no one is safe and there is no one suit fits all. So whatever you think, it is nothing that you have done that has cause it. You have just been one of the unfortunate ones just like the rest of us here.

Next don't be embarrassed to talk about it. Especially with us, we've seen it all before and we will never ask you to sweep up after your visit. But do try and talk to your family, friends, colleagues, etc it's one of the best things you can do. Yes it's difficult, but start of slowly and talk to the person closest to you. No one is going to be nasty about it, and if they are well they're not worth knowing.

Treatment is difficult and it can take time to find the right thing that works for you. We do have others on Ciclosporine hopefully they will chip in, but for now you can read a bit more here: Ciclosporine

As for covering it up, this thread may help a little: Skin Camouflage

I'm sure others will soon have more to say, but don't hesitate to just dive in. You are welcome here.

Regards.

Fred.

[Caroline]

Hi Jazzybee,

Welcome to PsoriasisClub.
Perhaps this is one of the best places to come and talk to others with your same problems.
We all have to cope with this nasty disease and I can imagine your feelings of feeling that you deserved it. But you can take it from me, nobody deserves things like this. It just may happen, anybody can get it. There may have been some reason in the past that triggered it, but it is very hard to find out what that trigger has been.
Scientific thoughts are going in the direction of e.g. certain infections you may have had, but have already long forgotten.
Don't bother yourself with those thoughts.

There are many people on the forum that have had phototherapy, you will probably hear from them.

In order to divert your thoughts to other things that feeling bad, we have an excellent Off Topic section, where you are very welcome to mingle and have a drink with us.
Pay attention though, not everyone is sane when they are off topic, I doubt if you can find a sensible one.

Have a good time over here, I hope that in a while you may feel better.
Caroline

[jiml]

Hi Jasmine    to the club, you have come to a great place for support and advice, we certainly don't have all the answers but there is a wealth of knowledge and experience here. You never need to feel alone while this club is here, we are all like you sufferers who are happy to share their experiences, this is a very friendly club and the members here are very supportive

If the phototherapy is not clearing you..,read on here about the treatments that are available cyclosporine can be very effective, but there are other things you could ask about that are less toxic....

I think we have all looked around and said "why me" but it's a disease that can hit anyone at anytime, and yes it is a life sentence, but it should be able to be managed so you can get on with life without the unsightly plaques dropping scales everywhere.

I would ask your dermatologist  about alternatives to cyclosporine, there are others although non are particularly nice but they can control psoriasis for long periods

You could ask about the treatment I'm on which had kept me clear for the last four and a half years
It's called Fumaderm and is very successful if you can get it

If there was ever a good time to have psoriasis  I suppose it is now as there are so many new drugs coming on stream that are targeting the right cells in our blood giving long term remission with fewer side effects .

As you have joined the club a good way to stay in touch with the latest news about psoriasis is to subscribe to the newsletter which comes out once a month here's a link to make it easy to do Groups

[AmandaL]

Hi Jasmin and welcome! First of all, the psoriasis is definitely not your fault so please don't think that!

Cyclosporine is a good drug, I didn't personally get 100% clearance but it definitely made a huge difference. Side effects are minimal as well which is always a bonus.

Everyone has their own insecurities and I think you would be very surprised at how little people actually notice psoriasis unless it's right in their face.

[Grizzly Bear]

Jazzybee


Good to see you Jasmin

We all on here know what you are going through and how it is to have and live with psoriasis, you are not alone and on here, you will find friendship and help.

I was on Cyclosporine, at first it was ok, it cleared about 65% of my P but as time went on, i found that one of the side effects was making me feel nausea and in the end, i was ill, throwing up. Bloody horrible it was.


Jasmin, i'm the insane one on here, all the others are loonies, trust me, i'm a real bear

Ask any questions you may have, we will do our best to answer them for you

GB



Here, have angel

[dyorke]

Hi Jasmine - welcome to the club

I felt like you to begin with but the guys and girls on this site are so helpful and friendly.
They made me laugh and offered advice.
 I realised that to talk about, especially with friends and family breaks down the  barriers and I feel so much better now

Keep us updated xxx

[Jazzibee]

Hi everyone! So nice to meet you all

Thanks for the advise, and for the angel!! I am pretty mad too so glad that I will fit in

 I have to say seeing how positive you guys all seem definitely helps - i think today was the first time in a while i wasn't the miserable one at work haha!

I am definitely going to try and find out about the Fumaderm - already booked an appointment with my derma to discuss

I would love to hear a bit more about you all and how / when you psoriasis journey started if you don't mind sharing 

[Fred]

I would love to hear a bit more about you all and how / when you psoriasis journey started if you don't mind sharing 

Oh some of us love sharing as you will see with the more posts you get under your belt.

But for now if you want to get to know us better, I would say start in the [Group Specific] board and just dive on in.

Also some members have threads where you can ask them questions: [Group Specific]

But just join in, you will find a friendly bunch.

[Grizzly Bear]

Hi everyone! So nice to meet you all

Thanks for the advise, and for the angel!! I am pretty mad too so glad that I will fit in

 I have to say seeing how positive you guys all seem definitely helps - i think today was the first time in a while i wasn't the miserable one at work haha!

I am definitely going to try and find out about the Fumaderm - already booked an appointment with my derma to discuss

I would love to hear a bit more about you all and how / when you psoriasis journey started if you don't mind sharing 

If you're mad, you will certainly fit in on here............look at me, i'm mad as a box of frogs


As to how we all got P etc etc Jazzy, there is another part of our site that has a few members journals etc. (forgive me but i forgot how many posts you need to view it, i think it's 5 posts ? )