Pg Sufferer

hi all i live in new zealand and cant find a support group here 6 years ago at the age of 29 i developed pg after a few years of investigating i have had about 65 lesions all over body

i looking for some one who has the same  and can support each other i went into remission 18 months ago but 3 months ago the lession came back with revengance i need to see what else other people are doing for treatment i did steriod tratment last time and gain 50kgs  not doing it again so need some help

elephantgirl22 elephantgirl22
36-40
2 Responses Mar 5, 2010

i am having the same problem here in west virginia . i have been on steriods for going on 8 months now nothing seems to help the burning. I was told here that ther was no cure for this. BUT you would think that the way everything is now with dr's they could find something to help. I started out about 4 yrs ago with them only on my legs and each time i get them they get worse. This time i have them on my back and arms. This is so hard to deal with at times. The pain is like no other. It's like you are in a burning fire. They did give me cream for them but it only helps for a short time. It even feels like needles to take a shower. If anyone knows what you all are going through it's me I am so depressed over this. sometimees i just want to give up.

rowdy i feel the same feel like giving up my pain gets worse too depending on where the come up i have had 47 lesions in 8 yrs on morphine when they do come up i try to tell myself that there r people worse off then me and try to cope as best as i can stay strong will keep u all in my thoughts i dont really think the drs really know the pain we go through unless u live it yrself

I am having the same broblem in Australia. I have PG of the breast and there apears to be no support structure that I can find here in Melbourne. The breast cancer people are not interested inmy joining in with their groups and unless you can talk to another person who has this thing they don't really understand what we are going through. I feel very isolated and the health professionals really do not seem to know the answers or undedrstand the distress. i do not know what is worse.... the PG or the steroid treatment. Any tips would be appreciated..........danaeok