Author Topic: HI!!!!  (Read 2307 times)

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Offline *Niki*

HI!!!!
« on: May 19, 2004, 05:23:58 PM »
Hi everyone,
Firstly i wanna say how fantastic i've found this site to be.  ((:lg

Here goes, my p started when i was 7 on my knee, it was thought it was a scab that didnt heal, that was until i got chicken pox at the age of 9, they never disappeared, they transposed into p.  I was covered and had to stay in hosp-a totally horrendous experience. :sad:

Between the ages of 11 & 13 i think i was relatively clear, i hit 14 and was admitted again with full blown pustular psoriasis, this was when i first encountered the "khan sandwich" oh joy!!!  I started tigason and thanx to that and the p i was the first girl in school to have a skinhead!!   ((:b

I have taken tigason, cyclosporin, hydroxyurea, tacrolimus and now mtx-the last resort (or so i'm told).  For the past 24 yrs i've bin a regular inpatient (4 admissions in 1 yr being the most).  I am severely allergic to dithranol-that experience was not fun at all, my p was a mass of red swollen weeping lumps-OUCH.  :snif:

I dont' tolerate PUVA or UVA or UVB/Narrow Band.  The fave treatment they give me is eosin ointment and cling-film-I'm the original buxted turkey!!!  Flamingo pink skin is the way to go and those sexy skin suits WILL be all the rage, one day LOL   ((*

I'm now 38. the p is still being insubbordinate, it will not behave itself and i'm v.down at the mo.  The mtx-15mg wkly is not having the desired effect on the p only inflaming my liver.   )):

This lovely sunny weather makes me ill, my p fills with pus when exposed to sunlight and the sunblocks which are white or coloured only "sit" on top of the p and make it look worse or make it flake.  Does anyone know of any COLOURLESS sunblocks, cos after all these years i aint bothered by the ignorance of others and how my two-tone skin looks, i just wanna b cool!!!!   ((:c

I'd love to hear from anyone who knows  and want to say a HUGE thank you, again to everyone who uses this site-i've learnt LOADS!!!!
  ((:lg

Offline lulu

Re: HI!!!!
« Reply #1 on: May 19, 2004, 05:32:17 PM »
Hello Niki

Welcome to the Boards, you've had a terrible time.  Glad you found this site it's full of lots of help and advice.
Amicitiae nostrae memoriam spero sempiternam fore

Stuart

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Re: HI!!!!
« Reply #2 on: May 19, 2004, 05:46:02 PM »
Hello and welcome. ;D

Offline jjoblogs1

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Re: HI!!!!
« Reply #3 on: May 19, 2004, 05:47:30 PM »
 ((:y Welcome NikiNakiNooo........ ((:c
Know ya skin type,for da sun


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Offline elaineG

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Re: HI!!!!
« Reply #4 on: May 19, 2004, 08:12:03 PM »
Hi Niki

Offline lilaclily

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Re: HI!!!!
« Reply #5 on: May 19, 2004, 08:14:51 PM »
Hello Nikinakinooo :)

Des

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Re: HI!!!!
« Reply #6 on: May 20, 2004, 08:09:49 AM »
Hi Niki, and welcome! :D


Ouch gal, rough time you're having there..... :-/
Have you ever tried any alternative therapies? They're usually a lot gentler and have less side effects - OK, so they may be slightly less effective on the short term, but every bit helps, and on the long term, who knows.... :)


I know of a colourless sun block: the one and only P20. BUUUUUUUUT - as far as I remember, it has quite a high alcohol content, so you would be wise to test it extensively on smaller patches first, because your P might just react to it :-/

But IF your skin's OK with it, it's the best! Total block (factor 20 - I think there's ever' a P40 out now, but not sure), not greasy , you put it on in the morning and it stays put the whole day.

But test it first.... :-/


Good luck!

:D
Des

Offline Alli_M

Re: HI!!!!
« Reply #7 on: May 20, 2004, 10:05:48 AM »
Hi niki

Offline Guy

Re: HI!!!!
« Reply #8 on: May 20, 2004, 11:08:55 AM »
Hi NikiNakiNooo.

hello and welcome along...

;) :D
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Offline loopyloo

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Re: HI!!!!
« Reply #9 on: May 20, 2004, 12:59:05 PM »
Hi Niki...

You been through the wars girl but you seem like you came through it smiling.. hope you find your sunblock!!!
Welcome to the boards

Lorraine x