PPP treatment help

Posted Wed 13 Mar 2019 11.20pm by Gwil
40 year old Bricklayer/builder suffering with PPP on palms of both hands looking for treatment that will reduce flareups & pain

Hi everyone

I was diagnosed with PPP 7 years ago at the age of 33, I only have it on the palms of my hands not on my feet. I’m a Bricklayer by trade and found day to day life difficult but I plod on. I have been seeing a dermatologist for a few years now, tried steroid creams with regular use of Vaseline,cetroben some other creams from health shops to keep it moisturised. I wear cotton gloves 24/7 and although I can get away with it in work however summer days with a T-shirt on and gloves draws attention. I’ve tried acitretin for nearly a year which had no benefits but suffered hair loss, Ciclosporin reduced flare ups but I felt unwell and my stomach swelled up to which I had to come off the medicine. I have been on methotrexate now for 6 months and feel unwell, no energy, tummy upset, buzzing sound in my ear and constantly feel like vomiting. My hands clear for a day or two then I get flare ups. I have a doctors appointment end of the week and I’m looking to come off the medication as 2 & half years of medication hasn’t helped much but made me feel unwell & depressed. When I have flare ups I use Dermo pads, it’s like a plaster but benefits from not using gloves and the mess it makes when blisters burst.

For a year the Dermatologist was telling me about a clinical trial called Apricot & another called Plum which he was hopeful I would take part, my name was on the list but unfortunately the area I’m from wasn’t considered for the trial (hopefully it’s a success and possibly be a new treatment for us in the near future)

I haven’t tried UV as my dermatologist claims it won’t work and it’s useless for PPP. Has anyone got any experience in it working?

What methods have you tried that I haven’t mentioned worth giving a go? I have recently agreed to do a virtual appointment with my dermatologist because he feels that I would benefit by not taking time off work to go to hospital for appointments, I get the feeling that there isn’t much more he can do to help me, I have suggested would it be worth me doing a tolerance test but he’s against the idea of flare ups a result of maybe Dairy or gluten etc... have anyone of you done a test and seen a difference by cutting down on certain foods/drinks?

Posted Fri 19 Jun 2020 2.41pm by SharonG

I had PUVA and NO it didn't work - to be honest it is worse now than before the PUVA!!! :( Puva was 3 years ago! I have it on my feet - at the moment it is really bad and I am awaiting telephone consultation from dermatologist - I have not been on the drugs I have tried to manage it with steroids vaseline and any other moisturiser that I get recommended!! Flexitol is good for getting rid of very hard skin but only use sparingly - it is a grim condition to have to live with - I have suffered it for over 22 years have good days and bad days but the bad days are winning at the moment!!! I am now giving blueberries a go!

Posted Sat 5 Dec 2020 10.33am by Mary
Hello Everyone, Mary here a PPP sufferer

I have had PPP for 5 years now, I have been on PUVA didn't work at all, Methotrexate for 8 months, didn't help and made me very sick, Acetretin, no help at all, Cyclosporin worked amazingly well, but had to come off it after 2 years for fear of kidney damage, had Apremelast, sort of helped, I am now on a Biologic called Stelara, I have only had the first 2 injections within a month, then it's every 12 weeks, however my feet and right hand are totally covered in blisters, and you all know how distressing and painful this is....just wondering if anyone of you are on any Biologic and if so which one is it, does it work and how long did it take to kick in? Look forward to hearing from you. Thanks

Posted Sat 5 Dec 2020 6pm by Gwil
40 year old Bricklayer/builder suffering with PPP on palms of both hands looking for treatment that will reduce flareups & pain

Hi Mary. I’ve was on the same path as you, tried all the meds that were prescribed but did nothing for my ppp but had all the side effects. Made me ill daily for years. I discovered a book written by Åsa Karrmen called how to treat ppp naturally, she also has a Facebook group page with people dealing with the same situation. Most of us have followed her advice by healing with diet. Starting off with an AIP diet, eliminating certain foods that trigger flare ups. We’ve all had fantastic results by doing so. The Facebook group is a place where people can interact with each other about their condition, and ask any questions you may have. I found her book more informative than the 5 years I visited dermatologists. It costs about £5 on Amazon. I haven’t taken any medication for 18 months, I still have the odd flare up from time to time but only after alcohol, stress or eating a certain ingredient.

Posted Sat 5 Dec 2020 6.13pm by Mary
Hello Everyone, Mary here a PPP sufferer

Thank you very much Gwil, for that information, I will check that out, sounds promising.

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