Hi, just joined-bit about my experiences...........

[arizona]

Hello all
Glad i found this site, most of my friends dont understand so i tend not to talk about it to them and its nice to know there is some support out there for us
I am 47 and mine started after suffering something like shingles or similar about ten years ago. I was given course of antibiotics and started waking up in the night so itchy i would get in a cool shower at 2am to try and relieve it. This was quickly followed by large patches breaking out and to cut a long story short was eventually suggested my immune system had gone haywire and was likely to have this for rest of life.
Devastating, had always had good skin but after this i declined invitations to go out, gave up swimming, spent summers covered up and lived like a nun.
Light treatment didnt have much effect for me, so after trying many ointments etc my dermatologist put me on cyclosporin 100mg daily and Dovobet ointment.
Sometimes it almost seems to be getting better, then will suddenly flare up. Is pretty bad at the moment but am under a lot of stress so quess this isnt helping.
I am going gluten and dairy free from today, have copied the Barney shakes and will try this. Looking back, i had a period of time when was living pretty much on rice, veg and porridge with soya milk-that was when i first started cyclosporin - maybe it was diet that was making a difference? i know i feel better if i dont eat bread or dairy. So here goes, two week trial without it and see how i go
Anyone experienced similar sudden start up of this condition?

[Kate_]

Hello Arizona and welcome to pho ,Im glad you found us .......I hope you find pho both informative and fun ,its lovely knowing we are all in the same boat as it were

Best wishes

Kate xx

[arizona]

Thankyou Kate, am just finding my way around the site and finding it very good and informative. I felt very alone with this and it helps to read how others cope with it x

[babyblue]

Hi Arizona,

You are suffering at the moment.  Mine didn't start so suddenly, over the years it seemed to find a new area, beginning first in scalp.  However, I did have shingles as well at one stage and that was considerably worse than P as was hospitalised for a 2 week period.

Welcome to the forum, it's amazing what we learn from each other here ... there are some fantastic characters ... I could point you in their direction but would probably upset a few in process .. (I have a few fav's)  However, posts by Madcat and Totoro are good to read, I'm on a similar journey in relation to diet (have been for a month) no great improvement to report .. ripper is also doing similarly on a separate thread, look thru' the alternative forum, you will learn from others on this healthy eating plan.  Never thought it would come to this for me, I sooo luv my food ... tho must admit I now am addicted to juices (was away from home last week and HAD to find a juice bar) ! 

Hugs
BB

[arizona]

Hi Babyblue
Thankyou for the tips, i had been reading some of these threads earlier and am going to have a go at making the shakes, i hope my little handheld blender will do it for the moment til i can get a proper one
Yep, giving up bread, dairy etc find very hard but how i did it last time was to just think of food as a necessary fuel and skip the stuff i was craving one day at a time.
I did feel so much better for it but boyfriend came along and started spoiling me, am very lucky to have found my guy, he says its part of me and he loves all of me. I was nine years on my own thinking nobody would want me, so anyone reading this thinking the same there is someone out there for all of us 

[Jamie..]

Hiya, welcome along, you have found a great place!

Mine appeared quite suddenly after I fell off my bike when I was young and gashed up my elbow on the gravel. Started there and spread allover in no time
25 years on and its more Guttate than the plaques i began with. It was great finding pho years back and finding other sufferers for pretty much the first time was a big help in not feeling alone and with people that understand. I'm on the Soya milk and rice cakes at the moment. Good luck with your treatments

[Midge]

Welcome from me too!

This forum has made a huge difference to my own coping mechanism - the information available on threads is very useful, and whatever you need to know is very likely known by at least one person on here!

and Jamie? Rice cakes? You sharing or what? 

[arizona]

Hi Jamie
Thanks for welcome, weird how something can just seem to trigger it off
I got some gravel burn last summer from being dragged along ground on back by my horse, yes i should let go but he was headed for a road - anyway still putting ointment on those bits, seems anywhere i get some sort of scrape means i got a new patch to deal with for months. I guess thats to be expected though
Note to self - must get full leathers for on the bike

[arizona]

Thanks Midge - lol where's Jamie with our rice cakes

[Midge]

I think he's counting monkeys, coconuts and Dairylea triangles on another thread!

[JUDGE DREDD]

Hello & Welcome Arizona. 

[Pieman]

hi Arizona

welcome from me too
pie

[MarieK]

Hi Arizona - welcome you will defo find some answers here...I tried the Atkins diet for 2 weeks and lost too much weight so stopped.  Bought a couple of special diet books in the past and went to a couple of healers (who were supposed to have a gift!!) who told me to stop eating this and that and just could not stick to it. So not much help sorry. The only thing food or drink wise that I did throughout the years find worsened my P was beer. If I drink beer I defo had more itch and flare up - so I stick to the Cider!!!! yummy!! Best of luck

[flecksable_flyer]

Hi Jamie
Thanks for welcome, weird how something can just seem to trigger it off
I got some gravel burn last summer from being dragged along ground on back by my horse, yes i should let go but he was headed for a road - anyway still putting ointment on those bits, seems anywhere i get some sort of scrape means i got a new patch to deal with for months. I guess thats to be expected though
Note to self - must get full leathers for on the bike

A horse! Woo hoo! I miss my horses. I used to breed and train Spotted Saddle Horses for trail. So now I have to ask what kind of horse you have.

Sabra & Surrido

[arizona]

He was my best friend for the last twelve years, beautiful piebald 15'3 Shire x Irish with an amazing cheeky sense of humour, sadly i had to have him put down last week, the most horrible day of my life but the only fair thing to do for him. I will miss him dearly but be left with many happy memories when the pain lessens i know x

[Jamie..]

Rice cakes are on there way Salt and vinegar ones and a lovely cup of tea to go with them Arizona & Midge

I will now return to the pho kitchen

[kerrieginge]

Rice cakes are on there way Salt and vinegar ones and a lovely cup of tea to go with them Arizona & Midge

Wheres mine? But I like the caramel ones!

Hiya Arizona. Welcome from me too!

[babyblue]

Rice cakes are on there way Salt and vinegar ones and a lovely cup of tea to go with them Arizona & Midge

I will now return to the pho kitchen

what you bakin' today JAM ? .. yummy banoffi again ? 

[babyblue]

He was my best friend for the last twelve years, beautiful piebald 15'3 Shire x Irish with an amazing cheeky sense of humour, sadly i had to have him put down last week, the most horrible day of my life but the only fair thing to do for him. I will miss him dearly but be left with many happy memories when the pain lessens i know x

(((((((( fluffy hugs 4u arizona  ))))))))) memories last a lifetime and beyond ... and the old cliche, that time is a great healer ..... is true...... let's hope one day soon you smile when you remember, or even laugh out loud rather than have those tears fallin 

 
BB

[Midge]

Rice cakes are on there way Salt and vinegar ones and a lovely cup of tea to go with them Arizona & Midge

I will now return to the pho kitchen

Mmmmmmm! BINGO! 

[flecksable_flyer]

He was my best friend for the last twelve years, beautiful piebald 15'3 Shire x Irish with an amazing cheeky sense of humour, sadly i had to have him put down last week, the most horrible day of my life but the only fair thing to do for him. I will miss him dearly but be left with many happy memories when the pain lessens i know x

Awwwww. I'm so sorry to hear that. :'( :'( :'( :'( My baby was 27 years old and I'd had her for 21 years when she died in her sleep. She was a strawberry roan Arabian/Tennessee Walker cross with 4 stockings and a bald face. You do get attached to them. Stormy had her sense of humor too. She was never afraid of dogs, and one time I was riding along the road and a guy was washing his car with a large Doberman laying under it. I saw the dog. I saw the guy look at me and pretend he didn't see me, and then "ignore" us when the dog came shooting out from under the car to attack her. Stormy never broke her slow walk, but she waited till the dog was in range, twitched her ear, then kicked the dog squarely in the chest to where he rolled over 2 or 3 times backwards and ran yipping back under the car! The open-mouthed look on the dog's owner was priceless! Normally I would yell to someone, "Watch your dog!", but I knew this guy was looking for a show. He just didn't get the show he was expecting. Why is there never a video camera around when you need one?

Sabra & Surrido

[Scruff]

Hiya and welcome along to the forum. It is a lot easier talking to people who know exactly what you're going through. No matter how understanding our friends and family try to be, they just don;t know what it's like. Some peeps find diet really helps their p and others don't, but best of luck with anything you try.

Scruff