Just Diagnosed

[nikkij31]

Hi, was diagnosed with ppp a couple of weeks ago after being treated for ezcema by my GP for 6 mths (though I never thought it was ezcema), at first the name meant nothing to me and I was just pleased to finally get a diagnosis...what a difference a fortnight can make, internet search engines have certainly educated me I have gone from disbelief, shock, numbness and probably now acceptance of this condition especially as it's now spreading....my two weeks of 'they've got it wrong' have finally hit home and I'm trying to face up to this, and by god this forum is hard hitting up till today I thought I had it hard as I've been struggling to drive and do normal things around the house for mths...but I realise after reading some ppl's stories I still have it pretty easy.
Had first appt with dermotologist which I found dissapointing was told from my histology that this was prob caused by extreme reaction to insect bites on hols earlier this yr, prescribed dervobet which most people tend to dislike...and told to go away and think about my options as my insurance company will most prob not cover P treatments.
So to my question, does anyone ever get any better? I literally have no unexposed skin left on my hands I constantly moisturise and before bed they look okayish to my eyes (still gross to anyone else) only to wake in the morning to mounds of dead skin. I have good days and bad, some days the lesions are so bad I can barely move my hands and i've already lost a number of fingernails, I'm trying diet, vitamin supplements, and contemplating UVB lamp for home use as i've been looking at the 'further down the line' treatment option and would literally try anything to avoid those!
On a lighter note tried the biotin smoothie tonight and god it made me vomit, I managed half a glass and should have stuck at that but no carried on and jesus i retched for england...my son said he was disowning me for putting such 'vile' (as he called them) ingredients in a drink.....think I overdid the onion & parsley!
An epic for a 1st post, think I just need to let off steam my family keep telling me 'when your cured"....will let u know if that ever happens as much as I keep trying to tell them it's unlikely they're not ready to accept that im anything less than superhuman yet, my heart goes out to all of you long term sufferers of this disease, and all those chronically affected...from a psoriasis virgin x

[Jamie..]

Hi Nikki and welcome along, you'll find tons of support and lovely people here and lots of different treatments to read up on, really hope you will find something that helps out with your hands soon and always try to keep faith you will do.

Jamie

[Pieman]

hi nikkij

warm welcome from me too

So to my question, does anyone ever get any better?

in short, yes - but it's finding the elusive and correct treatment plan that works for you
it depends on your approach - either natural alternatives and/or conventional meds if you prefer.
plenty of info for you to absorb on these threads.

wish you well, keep your "epic" posts coming
pie

[nikkij31]

Thanks have been quite positive and trying the diet thing and vitamins...but really hit a low this weekend, think a lifetime of being healthy makes you think you can overcome anything with the right attititude but acceptance of this illness is finally hitting me, despite all my best efforts my feet are splitting open as much as my hands have over the last few months and im finally realising this thing is bigger than me. i'm scared about the future i always thought i'd be able to work to retirement age, now  i'm petrified of what lies ahead i'm angry, tearful and damn right pi&*ed off, it's not fair but at the same time reading stuff on here makes me realise i'm minute in my suffering some people have had a lifetime of it, it doesn't make me less irate though i just wanna scream! - thanks for listening Nikki

[Maria2]

Hi Nikki,
Just over 2 years ago I was in the same position as you, had been going to gp trying various creams for p but it started to spread from one hand to the other, then came the bomb shell at the derm app this was ppp and that its for life!!!! 
I read everything I could get my hand on, very scary, it took a long time to get it into my head that some cream or tabs was not going to be a quick cure. I've had bad times where I could hardly walk with my feet bandaged and the skin on my hand cracked and bleeding, tried light treatment but it didn't work. Tried acitretin it did nothing for the ppp, but I got every side effect possible the worse was losing my hair,( though there are people on here that have had good results from acitretin) On a positive side my ppp is quite good at the moment not having a bad flare since end of August. pretty sure I've got pa now got 1st app with rheumy on tues. Sorry if this sounds gloomy but its just my experience of ppp. One good piece of advice I read from some one on here is not to underestimate the power of moisturiser I use Dermol cream and found it really good, but what suits one might not suit another.
Hope you soon find something that helps 
Good luck
Maria

[nikkij31]

Thanks all that replied, i've have had a good few weeks as have been using dovobet and hands & feet  have improved lots, strangely though have been to our local tonite and been talking to a p sufferer who has had p all his life, after looking at my skin has definately said i should get a second opinion as he said what i have doesn't look like p but some sort of bacteria flesh eating problem, he said from various out patient clinics and treatments he has never seen skin like mine?? makes me feel hopeful about a cure,  but wondering where to go for 2nd opinion as my gp has been rubbish for the last 6 six months! Any ideas??

[blueashworth]

My guttate goes into total remission when I take simvastatin and reappears if I go off of it. So if you need a statin ask for simvastatin. It does not work for everyone but for quite a few.