RE: Hi.

[Guest guest]

In a message dated 10/13/03 10:05:36 AM Central Daylight Time,

punk_manic@... writes:

> I was wondering if

> anyone has tried the 'injections' they are doing now for psoriasis?

> Erm...I don't know what they are called but they are around £10,000 a

> go. My dermatologist has been trying to put me off (because of their

> budget) but my rhematologist thinks it will be beneficial to me.

>

Hi With the price you mention the injectable you inquire about is

likely Enbrel and that is about the price for a years worth. I'm not sure what

the

exchange rate is currently but I believe £1 = about $1.50 US Some have said

the price for Enbrel is around $1200. per month which equates to about £800

I hope your dermatologist will approve your trial of enbrel, it has done

wonders for many people. There are many here that have used Enbrel and I am

sure

you will get a lot of good advice on it. Orin

[Guest guest]

Hi,

Yes kids especially teenagers can be really horrid at times. They react with

pack mentality before they think. I imagine there are quite a few of them that

secretly wish they weren’t so mean, but to step out side the pack would mean

that they themselves would be laughed at. Have you tried doing any kind of

educating of the masses. I haven’t had PA since I was a kid, but in a lot of

situations I get ask if I’ve fallen or what is that on my knees, ankles and

elbows. Right now it has decided to be all over my face too. I explain to them

about PA and how it develops, it link with RA, and especially that they can’t

catch it. Once when I was in college, in a speech class, PA was what I did one

of my speeches on. After that other students stopped staring and ask more

questions. People are afraid of what they don’t understand. I even had a

lady at Boeing one time tell me that she made sure her daughter scrubbed her

elbows good . . . as a hint that maybe that would help mine.

You are somewhat luck to be younger now and you will be able to take advantage

of all the new drugs and therapies that are coming available before you are too

disfigured. Sounds like you have a good RA doc who is on top of things.

How does insurance work in England. Will it help to cover any of the costs. I

am also looking forward to Embrel but couldn’t believe the price. I haven’t

heard back from my insurance yet as to how much they will cover. Your high

school years are only a part of your life. When you move on to university and

other parts of your life the kids that tease you now won’t even be a part of

your circle of friends. I hope that you get to try Embrel or some of the other

new drugs that are on the market.

Cheri in Wichita Kansas USA

[ ] Hi.

Hi,

I didn't realise there was a website about this (to be honest I've

never looked!). I'm 17 years old, and I live in England. I've had

Psoriasis since I was nine and I developed Psoriatic Arthritis when I

was ten. I know have very severe psoriasis, I'm on Methotrexate (9

tablets) which does absolutely nothing for my skin but controls my

arthritis quite well (along with diclofenac). I was wondering if

anyone has tried the 'injections' they are doing now for psoriasis?

Erm...I don't know what they are called but they are around £10,000 a

go. My dermatologist has been trying to put me off (because of their

budget) but my rhematologist thinks it will be beneficial to me.

I just needed someone to talk to this about other than my Mum. I get

a lot of hassel at school from ignorant people who thinks its funny

to laugh and make stupid noises like 'Ew' and it sort of gets me down

a lot...I have psoriasis virtually everywhere (the only place I have

really gotten it is on my stomach). So, I cannot really hide away the

fact that I have it.

A couple of weeks ago I had steriod injections into my thumbs (as

they are becoming painful and slightly deformed because of the

arthritis)...I have Psoriatic Arthritis in my hands (fingers and

thumbs), knees, hips, ankles, and toes!

I know this my sound stupid...but I'm glad to have somewhere now,

where I can get this sort of stuff off my chest. Thanks.

.

[Ed. Note: You've come to the right place , because you're among friends

now. Also, please be sure to check out the National Psoriasis Foundation (NPF)

at http://www.psoriasis.org/ Although based in the USA, they have lots of

information about psoriasis and psoriatic-arthritis. Ron]

[Guest guest]

-

> to laugh and make stupid noises like 'Ew' and it sort of gets me

down

> a lot...

Welcome !

Oh I remember those high school days with severe psoriasis and it can

be challenging. glad you found us. You are right that the people

saying Ew are ignorant. I have been around long enough to see one

person who teased me get it herself years later. I guess I don't

recommend you say that but it is tempting....you know you can get

this stuff at any age....

My psoriasis has been clear for a year from a drug called Remicade. I

don't know how the money situation is but it is definitely something

to look into further, not just to look better but to help prevent

damage from the arthritis.

Hope you will write more to us-I always enjoy hearing from young

people-helps keep me young HA.

Best Wishes,

Marti

[EdNote: , I second all of Marti's comments, and just wanted to add that,

while, as you note, (certain insensitive, pond-scum-like) others' comments can

get one down, PAers tend to have better outcomes if demonstrations of such

troglodytic inhumanity motivates us to get " up " rather than " down " : As I just

noted in a previous post, most rheumatologists and psychiatrists tell us that

PAers who fight back--who keep their sense of humor, who refuse to submit (and

you can see those qualities, revealed in Marti's post above) have the very best

outcomes....

D.]

[Guest guest]

In a message dated 10/13/03 11:58:46 PM Central Daylight Time,

rachellvbug@... writes:

> (Editor's Note: Hey gang, We need a Movie of the Week: See, here are these

> two people, and Brad Pitt, and Brad Pitt has all 5 types of PA,

> and he lives quietly, alone, outside Podunk-on-the-Quonset, in the middle of

> the Australian Outback, on his 5,000 sheep station (where, incidentally, all

> his sheep have the P, but not the A), having years ago given up on *sigh* a

> love of his own....When, desperately searching for advice (he has just

> developed a 6th type of PA, where his clothes--shirts, pants, socks, belts,

> whatever, have broken out in paisley patches of psoriasis) he comes across our

> website, and after lurking for months, he reads a post from (wait for it)

> veterinarian/shepherdess , who is attempting to breed paisley

color

> schemes into sheep's wool---well, you get the idea, I mean, that's just the

first

> tease of the pitch to the studios....more to come... Slate! Marks! Action!

> Cut! Hey, boy, where's my trailer.....

>

> D.

>

WHAT???? LOL Incidentally I dont know if anyone else ever noticed

' brother 's hands look as if he has suffered either PA or RA . I

tried to find a pic but too much trouble. The movie I noticed this in was

" Runaway Train " Maybe if its PA and we all hound him enough we can have a

second

celebrity to represent our cause along side Jerry Mathers. Orin

[Guest guest]

My recovery wasn't horrible, just hard the first couple of days. I

was on painkillers, including valium, for only 3 days. Afterwards, I

was able to switch to Tylenol.

Because of the cost involved, I would not be able to afford to fly to

Denver or Dallas, though I do have relatives in Dallas, so that may

be something to consider. If I feel uncomfortable with any responses

my PS gives me on my consult today, I will seriously consider this

option. Because he did my initial surgery, my PS is offering to

charge me for supplies and anesthesia only. Since he has a surgical

suite in his office, I won't have to pay a facility fee. I will have

all my questions ready! Thanks!

[Guest guest]

Thanks so much , Lynda, , and all who have responded to me!

I am quite scared and know that this is going to be a difficult

journey for me. Along with the guilt that I feel for getting

implants in the first place, when everyone who loved me, including

myself, kept trying to discourage me, I also am dealing with the

physical ramifications, as I am sure all of you can relate to. If

hindsight were 20/20, well.....

But I know I need to move forward. It is amazing to me that saline

implants were just approved in 2000! Ten or twenty years from now,

who knows what we will know that we don't know now.

Thanks again for all your caring responses! )

[Guest guest]

You are welcome! I know it was the scariest time of my life, and I couldnt wait to get out it!I was so confused ,will insurance cover it, what would l look like, what PS and what state will we travel too, will I be disfigured, will the doctors be right, all for what? And most importantly, was I crazy, grasping for hope in all the illnesses and problems that I just needed to accept? Would if i ended up being wrong? Would if I did it all for nothing?

This is the hardest part, the biggest turn in the journey, but the best comes, when you wake up explanted and notice those neck pains are gone, and the following week the joint pain isnt so bad in your fingers and about a month later, your breasts have fluffed and you look wonderful! Hey, this wasnt so bad! And you learn to accept your body now, in exchange for health. And you think clearer and everyday, you know, you know, you made the right choice, steps closer to more wellness. Thats the good part. You are in the challenge mode, where everythnig seems stacked up against you, so many things to choose, so many telling you you are wrong, so many decesions to make, and we will help you through it. Anytime! Love julie

>From: "cristinawoh" <cristinawoh@...> >Reply- > >Subject: RE: Hi. >Date: Thu, 03 Mar 2005 17:10:42 -0000 > > > >Thanks so much , Lynda, , and all who have responded to me! >I am quite scared and know that this is going to be a difficult >journey for me. Along with the guilt that I feel for getting >implants in the first place, when everyone who loved me, including >myself, kept trying to discourage me, I also am dealing with the >physical ramifications, as I am sure all of you can relate to. If >hindsight were 20/20, well..... > >But I know I need to move forward. It is amazing to me that saline >implants were just approved in 2000! Ten or twenty years from now, >who knows what we will know that we don't know now. > >Thanks again for all your caring responses! ) > > > > > >