Posted Mon 30 Jul 2018 17.26 by D. Brother (edited Mon 30 Jul 2018 17.29 by D. Brother)
I had the same problem with blisters and pain from PPP. However, I no longer suffer these outbreaks due to the steps I took to stop it. First, do not let the pustules grow larger. Pop it right away as it appears and drain the white cells that filled it. I used a sterilized straight pin to do this. These white cells that fill up the pustules keep eating away at your skin until they pop on their own. When you yourself pop them, the healing begins right away. Every morning I would check for more pustules and pop them before getting any bigger. I also have a lotion with no irritants or alcohol in it to keep my feet and/or hands moist and not to dry out and peel. It took some time, but finally stopped appearing again and again. Stay with the routine and you should be ok. Your friend, Doris
Posted Thu 11 Oct 2018 23.27 by Helsbells
Hi,first time on here,been suffering nearly a year.I am seeing dermotolagist,I have tried all there creams,steroid creams,grease I am now only using Epaderm.I have had puva treatment it didn't work.I have been told I have Palmaplantis.My hands arnt to bad at the moment but my feet are so painfull,It does get me down.Tomorrow I start on Ciclosporin.I am a 62 year old female thanks.
I’ve been on methotrexate for about 6/7 months now and I have seen a real difference. Most days my hand looks almost like a normal persons hand! I didn’t see any marked difference for about 4-6 weeks after I started it so please don’t give up. It’s not instantaneous but it really works for me. My shins and feet are effected too but they’re the last (apparently) to improve. My scalp was really, really bad. So much that I haven’t had a haircut in over 2 years but I’m happy to say I got my haircut last week and I wasn’t ashamed or embarrassed to go to a new hairdresser. I use dermovate creams at night on my feet and hands them put cotton gloves and socks on and although I still have bad days it’s nowhere near as bad as it used to be
Posted Mon 28 Jan 2019 15.39 by jax53 Hi, I am 64 have Pustular psoriasis and psoriatic Arthritis.
I have had this condition for a little over 20 years, it is driving me nuts, When I see my Dermatologist she says where are the blisters, I can see no blisters on hard skin, it is at that point I feel like I could throttle her, So I keep a photographic Diary, and can shoe her the blisters, I also have a Rheumatologist who thinks it is all in my head, when I know it is not, I have been stunned to learn of the damage this disease does, and yet no medication can cure it, I have tried all the current meds from 20 years ago, and want a chance at new up and coming drugs that are available, use me as a guinea pig, just give me a chance, I am only human after all.
Posted Thu 7 Feb 2019 07.55 by Isa
Hi
Have had this condition for 23 yrs now, and I got tired of all the doctors experimenting with me, so I declined treatment and now I just use vase line for my feet, eating lots of vegetables, and only meat like chicken and fish. I still have ppp on my feet but not aggressively.
Best regards
Posted Sun 14 Jul 2019 16.48 by Jane29
Hi,
I was diagnosed with PPP two years ago. I have it mainly on my right foot, with an odd pustule on my palms. I was prescribed Elocon ointment, but it just made it worse, going from the size of a 50p piece to covering most of my sole, and creeping round my instep. As everyone has said, it’s like walking on glass shards.
I had 9 weeks of PUVA treatment last year, and it cleared it up. I was free of pustules for 10 months. It’s now started to come back, and after trying the Elocon again, it’s still making it worse.
So I’m currently trying a home remedy of honey, and it seems to be clearing up. At nighttime, I spread a small amount of set honey over the raw area (I thought runny honey would be far too messy!) then wrap my foot in cling film. During the day, again I use a small amount of honey, then put a small piece of cling film over it and a dressing on the top. The cling film during the day is to stop the honey oozing out into my shoes!
It’s early days, but there’s a definite improvement.
Posted Sun 14 Jul 2019 17.44 by Jenaf1
Hi, I’ve had this for about 16/18 months. Took a while to be diagnosed & I am on methotrexate. The main side effect I find is lethargy, I’m so tired on it. I take it every Thursday and within 5 mins I’m asleep, don’t even bother reading a book. You won’t remember it! You can take folic acid and that’ll pep you back up. The metho does work but takes a while to kick in. Stick with it, you’ll still have flare ups but not as bad as it has been. Hope this helps 😀 x
I am now also on methotrexate and have been for about a year . I still get daily pustules but the pain of walking on glass has almost gone completely . Stick with it the lethargy lifts a bit with time and you will feel less tired . Hope you get some relief x
Posted Wed 9 Oct 2019 15.07 by Bethkin (edited Wed 9 Oct 2019 15.09 by Bethkin)
So I’ve had some bad news....
After the cyclosporine working so well it started to not work as well and my psoriasis came back. The consultant decided to up the dose so I was on 150mg twice daily and they upped it to 250mg twice daily. My kidney function shot up so they lowered it to 200ng twice daily but my kidney function is still no better!
They have decided now I am to move to methotrexate! Has anyone been on this before just looking for some advice? :)
I have been on it for three weeks and am constantly feeling sick on it in the evenings? Also I have been experiencing a lot of diarrhoea too? Has anyone else experienced this?
Posted Wed 9 Oct 2019 15.38 by Cazzy27
Hi Bethkin. I too was taken off Cyclosporin because of the kidney function. I was also put on methotrexate (reluctantly) and feel dreadful for about 3 days after taking it. I couldn't stomach the tablets so they have put me on injections as they say it bypasses the stomach but still not great. I'm also on acitretin. So what with feeling sick, tired, nose bleeds and hair thinning I'm not doing that great. They say there isn't anything else they can try so not sure where to go from here. Hope you have better luck.
Posted Wed 9 Oct 2019 15.57 by Bethkin
I take mine on a Monday and this is my third week of having 10mg but the feeling sick and diahorrea is definitely getting worse. I am only 27 so they won’t put me on acitretin as I have no children yet and was looking at having them within the next year but my feet have got so sore!
Currently my feet are full of blisters, the skin is cracking constantly and bleeding despite regular moisturising and steroid cream application. It’s also spread to my scalp now and constantly keeps getting infected meaning antibiotics constantly! To top it off I’ve not been able to walk so have had 3 weeks of work in total! The only shoes I can wear are my slip on sketchers with the foam padding! And even then I’m limping!
Fed up!! What an awful condition to have!!
It is so horrid. I've had it for about 8 years now and have tried everything apart from biologics. They won't let me have that because it's only on the soles of my feet and a bit on the scalp. I have read that it can sometimes go when you're pregnant but it does come back afterwards. I've had the feet bleeding etc and it's awful and sometimes it's like walking on shards of glass. At the moment it's fairly under control but not liking this sickness feeling and bad stomach. The best moisturiser I have been given is called Isomol Gel. It's very soothing and seems to keep them from drying out too much. I gently rub it on and let it soak in for about 20 mins.
Posted Wed 9 Oct 2019 19.05 by Bethkin
I’ve had it for around 2 years now.... I will ask my consultant on Tuesday as I’m seeing them then about the isomol gel. I normally put it on forst thing in the morning in the afternoon then at night with some bed socks! But I’ll try this cream see if this helps.
Are all these side effects quite normal then? I’m hoping pregnancy will help (when I’m ready) but it worries me about having to come off everything for 3 months before trying because obviously I’m going to fore up then?
Posted Wed 9 Oct 2019 19.15 by Cazzy27
It's definitely worth a try. If you pay for your prescriptions then it might be worth looking around. I think I saw it for about £5 for 500ml. Yes 3 months is a long time not to be on any meds. Hopefully they will be able to find you something short term when the time comes. Yes these side effects are normal. There are quite a lot that you can get according to the leaflet that comes with the meds.
Hi bethkin
Are you also taking folic acid with your methotrexate ?
I felt awful ...sick and bad stomach so they upped how much folic acid I take .
I take it everyday apart from the day I take the methotrexate . It really helped me. It took a few months for the side effects to lessen but I am now pretty much living a normal life . I still get breakouts but I can wear regular shoes and walk properly for the first time in years ....hope you get sorted xx
Hi there.
Yes I take folic acid too but only on a Friday. Maybe I should ask for more days of it?
I will be seeing the consultant on Tuesday anyway so will probs get it sorted then?
Thankyou guys!
It’s nice to know we can have someone to turn to for support when struggling!
Posted Sat 12 Oct 2019 23.44 by Lizardfeet39
Hi again
Just a thought .....I also use a topical cream to help the layers of skin shed easier so they dont crack and bleed . It's called diprosalic may be worth mentioning it to your specialist too . I have got everything crossed for you . Easy to say but try to stay positive xx
Posted Sun 13 Oct 2019 01.54 by Jenaf1
Methotrexate works for me. I’ve had pp for about a year and a half/2 years diagnosed. It works for me, but massive side effect made me tired and drained all the time. Now I take folic acid 6 days a week and on the 7th I take the methotrexate. I still get occasional flare ups but no where near where it used to be. I used to be embarrassed to show my hands at all, I work in sales and traditionally to seal a deal you would shake hands. I couldn’t do that, it hurt too much and tbh no one would want to shake hands. I used to joke that it’s fine, I just have leprosy!
Posted Sun 13 Oct 2019 02.01 by Jenaf1
You can take folic acid for 6 days, as long as you don’t take it on the day that you take the methotrexate. (Chemical reasons, stops it working as well) but when I went from taking it 1 day to 6 days there is a massive difference. So much so, if I run out it’s Noticeable by other people
Posted Wed 29 Jan 2020 12.45 by Bethkin
Hi guys looking for advice again.... been on methotrexate 15mg now for 3 months and 10mg for 2 months....psoriasis not getting. Any better on my feet still getting regular blisters and the feeling of walking on glass every day. But I have started getting cyst like spots on my face! All over aswell that leave my face sore and bleeding! Could this be my psoriasis or a side effect from the methotrexate?
I’m at my wits end! Nothing so far worked except the ciclosporin but can no longer be on that due to reaction from the kidneys :( plz help!
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Posted Mon 30 Jul 2018 17.26 by D. Brother (edited Mon 30 Jul 2018 17.29 by D. Brother)
Posted Mon 28 Jan 2019 15.39 by jax53