so confused about it all !!!

[linsey262]

this is my p story  , please read and share your own story if you care 

when i was 18 (now 29 ) i was diagnosed with p , since then ive had flare ups , clear skin , and a mountain of treatments , ive been on dovobet for approx 7 years and for about the last 5 years ive had severe plaque p on my elbows, knees,base of my spine and the back of my hands.

I have had UVB treatment twice which worked at the time but p returned with avengance as soon as i stopped going.

About 2 months ago i came out in a rash and yep it turned into guttate p , i now have that on top of my plaque p all over my torso, down both legs,on my scalp, down both arms and the groin

P has never really affected me too badly in my day to day life (apart from looking at my scarred hands all the time) but now i have it pretty much everywhere and its getting me down

my doctor doesnt seem to care and practically ignored me when i said i felt depressed , hes gave me a cupboard full of creams,lotions and potions but says i need to wait just like everyone else to see a dermotologist.

i have a very supportive family and hopefully my hospital appointment will come through soon , but i am at a total loss  - when i look p up on the internet i feel bombarded with "miracle" treatments and  causes

i believe because p comes from within , there is no point putting cream and steroid treatments on everyday - maybe i should be treating it from within.

if anyone fancies having a moan or just a wee chat about p please write back    thankyou for reading , sorry for sounding so freakin needy but i had to get that all off my chest !!!

[peter05]

i am sorry to hear you are feeling so low at the moment, i would go back to your GP & tell him how bad you feel & tell him you cannot wait a long time just because you do not want to go private, i assume that's the case otherwise private appointments are very quick which i think is  is not right

[arizona]

You most certainly shouldnt be using Dovobet all over for that length of time 

Have you been referred to a derm, you mention doc said you have to wait like everyone else? I presume he has done a referral?

[yorkshire_hammer]

In my experience, every GP and derm I've spoken to have been utterly useless, and usually pretty uninterested and unsympathetic. But I'm sure there are some good ones out there. The fact that the first thing they say is always "there is no cure", makes me think that I'm just wasting everyone's time by even going to see them.

I also tried the UVB treatment, which was great, except it made me bright orange, and lasted about 2 weeks before it came back. Can't really see the point. Now I just hibernate for the winter and appreciate the wonderful UK summers more.

Hope this helps 

I do recommend Curatoderm vitamin D cream for keeping it under control a bit, especially in sensitive areas.

 If you are looking for a miracle cure, you might want to try BJ's Vitamin D3 thread; You are not allowed to view links. Register or Login
Although the longer it goes on, the less of a miracle it appears to be. From what I can gather though, there are a few people on this forum who have had huge and lengthy remissions from it.

Good luck

[bjm]

hi hammer,,,  ..i don't think its any miracle  ..just a way to try and keep down  the inflammation for some..i think for many of us...at least i know for me, the p  wants to get worse as i age (63)..perhaps some genetic unraveling or increased  inflammation tied to aging ..i suspect the  GI tract, arthritis, etc but  i am constantly playing catchup to keep  any inflammation down and hopefully with it the p in control...having p for over 20 years this works pretty good so far..on it the last seven years ...i battle the bits but in good shape,,bp 106/68..i think it all ties in.

..i knock down the tcell counts with sun and both uva and uvb from spring through fall... extra D to temper the immune response, selenium,folate,ibu maybe C to keep skin cancer risks down, a good diet with yogurt and big big salads to get and maintain good microbes in the GI tract..and less junk,sugar and nitrates which kill em...

4000iu of D, small multi,2flax,  ibu in the evening if needed and folic,selenium,C when i get sun...big salads/yogurt and sun whenever i can get it...(and then i always experiment with something..presently its egcg.

Its the only way i can do it without serious drugs ..but if i had diabetes, arthritis, ibs, crohns ,overweight etc or a host of other inflammatory conditions,  then my guess is it makes it tougher to keep this P in control with any method.

bj

[LKP]

I know exactly how you feel, my story, age etc is practically the same as you. Im also waiting for a dermo app in the vain hope they might be more sympathetic than gp. Ive found reading this forum really helps as emotional support. We are not alone... Keep smiling x

[yorkshire_hammer]

Ahhh, the man himself!! I've been reading your thread for days on end. It's definitely enough of a miracle cure for me to give it a damn good go, and your knowledge and research is impressive and intimidating.
The longer I read though, the more I saw people clearing up during the summer yet still relapsing during the winter, which is what happens to me anyway. And that is following my very strict regime of drink, drugs, cigarettes, and eating only frozen pizzas, bread and cheese, with no veg. I do work outside though, so it's not all bad! 

However, you do have yet another disciple. I will be starting on vitamin D3, a multi-vitamin, Omega 3, Peppermint oil and probably just a weekly Ibuprofen (as one of those a day for the next 40 years is just a little too scary). I hope to see you back on your own thread when you finally finish fishing.

Thanks for all the advice and time you have put in. You deserve a medal, it was hard enough just to read all of it. 

[bjm]

hi hammer...my old diet exactly..

i'll go to the old thread now..

[izzybeth74]

hi there, I'm sorry that p has affected you in such a huge way and that your GP isn't much help. Have you ever considered alternative therapy? I found that hemp cream worked for me but i am fortunate not to have it as bad, as i did get rid of a huge problem that was causing most of the stress that provoked my p [ my ex ] , if you have a lush shop near you they have bath bombs that make your skin nice and soft i found that they have bath bombs for p. its a vicious circle because the more you think about p the worse it gets. i hope you find something that works for you. by the way my name is Liz p sufferer since 1998 any time you want to off load i'd love to chat.

[MarieK]

Heh Linsey - sorry to hear your experiences of doctors has been somewhat negative. I'm
35 and hav had P since I was 18. My story very similar to yours . Don't know if you been to Dermatologist but u should hav a regular one . I have one I go to regularly in hospital and he sees me each time I have an Appt and answers any questions I have. I'm on medication after havin all treatments goin . Ask the derm plenty of questions and this site is great for advise and feedback. Goodluck and remember there r loads of different treatment nowadays ....