Palmoplantar Pustulosis Psoriasis
Posted Sun 22 Apr 2018 09.23 by Cazzy27
Hi mully. I agree with everything Bethkin has written. I didn't know who to talk to and get advice etc but this site is great. It's nice to know that you're not alone in this. I'm just over 60 and have had this for nearly 7 years now. It's hard to say don't let it get you down because it does. Mine is mainly on the soles of my feet so quite often it's like walking on shards of glass! Hope you find something that works for you.
Posted Tue 1 May 2018 20.00 by Lizardfeet39 (edited Wed 2 May 2018 18.53 by Lizardfeet39)
Hi there 😁
I have had ppp now for going on 5 years, I was originally misdiagnosed with disydrotic eczema and I too had to beg to see a specialist . I am now under a specialist and had a number of treatments including puva, which just seemed to aggravate it . Acetretin was next and I have to admit this did limit the pain and helped the skin shed , but after being on it for a year it just seemed to stop working , I am now on methotrexate and have been increasing the dose every fortnight . I am about to embark on 20mg so let's hope it does the trick . I am currently sat with my feet in a bowl of water to try and get some relief while my long suffering other half makes my dinner for me (small perk lol ) I hope you all get some relief and your treatments work it's nice to have somewhere to speak to fellow sufferers as I don't think people get the daily struggle . Keep fighting folks xx
Posted Tue 1 May 2018 21.19 by Bethkin
Oh I’m so sorry to hear this! I’ve been suffering for around 18 months but I’ve been on cyclosporin now for 3 weeks and honestly my feet have cleared up and I have no more pussy spots! Before I was put on it I was in the same boat as u. Couldn’t stand near the cooker to cook because being on my feet too long was just torture and I ended up having time off work. Would defo recommend it to anyone. I had PUVA and it made my feet come out with massive blisters all over!
Hope the Methatraxate works for u though but defo ask for ciclosporin if it doesn’t help.
Best wishes :)
Posted Wed 2 May 2018 18.52 by Lizardfeet39
Thanks Bethkin I think cyclosporin is my next option if the methtx doesn't work but as you will all know too well , you have to give everything a go before they will move on to the next one . It's been torture waiting for something to happen for the better .
On a positive note I have been asked to take part in a medical trial that is being conducted to do more research into PP as it has finally been recognised that little to no research has been carried out in recent years. The actual trial is called APRICOT , they are testing an arthritis drug with good results and less side effects than the current drugs being used . I am on the sister trial called PLUM and they are just using my blood samples for the trial so I don't get to try any new drugs but , hey it might help us all in the future , you never know 😊 http://apricot-trial.com/plum/
I hope cyclosporin continues to give you good results
Best wishes x
Posted Tue 15 May 2018 14.56 by Cazzy27
Hi Helen Evans. Can you tell me if you are on any other meds for your condition and is it ppp that you suffer with? I have it on the soles of my feet but without meds it does creep up my legs and arms. I'm on Cyclosporin at the mo but have to come off of it. They want me to have methotrexate injections but having had the tablets which stopped working I am hesitant to do so.
Posted Tue 15 May 2018 16.03 by Helen Evans
Hi Cazzy27
No other meds at all. Quickly realized that ointment etc wasn't going to work so just use foot soak, footfile and Vaseline sometimes. Fortunately doesn't seem to be spreading anywhere :-) Hope you find something to suit you.
Posted Wed 16 May 2018 13.06 by Cazzy27
So just had my appointment and I have to go back onto Methotrexate. Last time I was on this was the tablet form which made me very nauseous so now will be having injections instead. This is my last drug that I must try before being referred to a London hospital. Has anyone had the tablets and then injections? Just wondering if the injections are any better.
Posted Tue 24 Jul 2018 02.06 by PussOff
Hi fellow sufferers,
I started suffering from PPP over a year ago and was misdiagnosed many times before eventually being referred for PUVA treatment, which I am now half way through. I am of child bearing age so haven’t wanted to try any of the medication that may toy with my hormones, as you have to come off it 2 years prior to trying for a baby. I am in my mid 30s and have no children so I don’t have time to waste if I was to try for a baby. I thought PUVA would be the answer but it’s not doing anything. What on earth is it actually supposed to do?? It certainly doesn’t stop the blisters. Anyway, I am here because I feel so down about it all and I currently cannot get to sleep because it is too hot and my feet are too itchy! When I tell people what I have, they suggest things like ‘wear sandals’ ‘try E45’. I want to scream, I’ve tried everything! I just can’t believe I have this, I cannnot imagine having to live with this for the rest of my life, always having to wrap my feet in cling film at bed times. I don’t know how to cope anymore :(
Posted Tue 24 Jul 2018 07.07 by Cazzy27
Hi PussOff. I do feel for you. I often ask myself 'why me'? Life seems so unfair at times. Have a look at the forum about eating blueberries. I'm about 10 days into it but not sure it's helping but I am going to give it a good go. At least the PPP hasn't started creeping up my legs so only time will tell. It's a bit easier for me with meds as I'm 60 and have had my children so it must be awful for you. Surely they have to find a cure soon for this! Good luck. Carole
Posted Tue 24 Jul 2018 12.57 by PussOff
Thanks Cazzy27, I’m trying a gluten free diet at the moment but it doesn’t seem to be making a difference. I’m going to give it 4 weeks. I’ll try the blueberries too. Has anyone ever been tested for food allergies? I thought the doctors might do some blood tests to rule anything out, but they don’t seem to be interested in anything other than doing PUVA treatment. Just wondered if they ever check this with anyone else. I try to think others have it worse but unfortunately this doesn’t stop the discomfort and low mood. I’m fit and healthy now (apart from PPP) and I can just about cope, how the hell will I cope later on in life. What an awful condition we suffer from!
Posted Tue 24 Jul 2018 13.18 by Bethkin
Hi there Pussoff.
I am only 25 and have PPP. They first put me on PUVA however this didn’t work for me at all and got to a point where I was in your situation... fed up, couldn’t walk because it was too painful too and having to ring in sick at work! It was destroying my life and I went to my appointment in tears because it wasn’t working... I have been put on cyclosporine now and it isn’t as bad as some of the other medications! And to top it all off it cleared up within a week! I could not believe it! It’s defo worth a try and if u want to have babies I believe u only have to stop it for a couple of months! It’s defo worth a try ;)
Posted Tue 24 Jul 2018 15.06 by Cazzy27
I agree with Bethkin about the Cyclosporin. I was on 100mg twice a day and it worked quite well and for me there wasn't any side effects. They had to lower the dose to 100mg once a day as it was affecting my kidney (I only have one) and therefore the meds were not as effective. I also think I am luckier than a lot of people but it's such a horrible thing to have especially as there's no cure as such and seems never ending.
Posted Tue 24 Jul 2018 17.33 by PussOff
Thanks Bethkin and Cazzy27, I will ask my doctor about this. Is Cyclosporin something your doctor suggested or was it a dermatologist? And how long are you expected to be on it, did they give you an indication, Bethkin? I wonder if it will come back as soon as one stops taking it. Still, something I’d like to try. I will continue with PUVA until the course ends so that i can definitely rule it out as something that doesn’t help. Thanks again.
Posted Tue 24 Jul 2018 18.43 by Cazzy27
Hi PussOff. It was my dermatologist that put me on Cyclosporin. Originally I was told they only like you on it for 6 months but as there was nothing else they could try I was kept on it for 18 months! I had blood tests about every 3 months and that's when it was picked up about my kidney function. I have known people to be on it for a number of years, but not necessarily for psoriasis. And yes it does come back when not on it and quite quickly in my case.
Posted Tue 24 Jul 2018 19.46 by Bethkin
Mine has not completely gone don’t get me wrong however it is a lot better. They said to me I could be on it for years tbh and it was my dermatologist that put me on it not my gp as it’s a specialist drug and ure gp can’t prescrive it I don’t think. Honestly I was supposed to finish my course of PUVA but u shud notice a decision after a couple of sessions but it did nothing to me and I had 26 sessions!! It took for me to walk in literally crippled and crying for them to change it because I was desperate and as a newly qualified nurse myself it was having an impact on my career! Honestly Speak to ya dermatologist about it, there’s a lot of different medication out there to help us! And believe me it is worth it the difference is incredible!
Good luck and keep us updated :) xx
Posted Tue 24 Jul 2018 20.31 by PussOff
Grrrrr it’s so annoying! I hope they find a cure soon. Thanks both for your help. I feel for you being a nurse Bethkin and having to cope with this :( poor you. I’m not working at the moment, I was studying when it first erupted and I planned to get a job once i graduated, but a year later and I still havent found the enthusiasm to find a job because the thought of having to cope with this whilst working has put me off. I thought I’d wait until I got rid of PPP, but now I realise that may never be. I will speak to the demertologist. I’ll post any significant changes. Thanks :) x
Posted Tue 24 Jul 2018 23.05 by Dionnemcleodx
Im a 21 year old hair dresser with ppp just on my hands only
Hi puss off iv had puva it helped keep it controlled while I was getting it but had to stop due to it making me unwell and made no clear difference but it didn’t break out bad while getting it as soon as they stopped It if came back worse now waiting on blood tests coming back to get Acitretin hopefully this works for me I am of child baring age also and this is only a few months after you stop you are safe to convcive aswell hope this helps
Posted Wed 25 Jul 2018 00.08 by PussOff
Dionnemcleodx it doesn’t seem to be doing much for me either :( I got my hopes up thinking it’d clear it. Thanks for letting me know, that’s something else I will bear in mind. Good luck with the next treatment option, hope it helps! Thanks
Posted Mon 30 Jul 2018 04.50 by JLS306
I am wondering if anyone has associated this condition to horomones? I am in the US so if something doesn’t make sense that is why. This condition started for me about 13 years ago after I had my middle child. I can remember having a puss filled blister come up on the side of my finger and wondering what it was. Stared out very slow. Maybe one or 2 blisters here and there but after about 6 months I was full blown (for myself) broke out so to speak. It is a vicious cycle. Itchy blisters, dry out and turn dark, then flake off, then peel and repeat. Anyways. This condition bothered me for years and years and I tried a lot of different treatments and nothing really helped. When I got pregnant with my now 7 year old my hands and feet were perfectly clear. I also have noticed with my flares that they are worse around my period, that’s when the blisters are worse. It had been gone randomly for a couple of years at least and right now it’s came back not quite full blown like before but quickly getting that way. I found this site searching for anyone who has found any thing that works as it has been a while since I had a flare and was hoping there was some new info on it. Sad to not see anything new. But def wondering if anyone has associated this with their horomones. I know men have it too, but don’t us women have some male hormones in our systems? Sigh. Idk but I hoping it goes away again and doesn’t persist. I think my flare up this time is due to stress.
Posted Mon 30 Jul 2018 06.43 by Cazzy27
Hi JLS306. I also wonder about the hormones. I went through the change of life about 10 years ago and about 7 years ago I got PPP. At the moment I'm trying blueberries (please read the forum about blueberries). Not sure if it's going to work for me at the moment but I'm giving it a good go.
Good luck
Carole
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