Palmoplantar Pustulosis Psoriasis
Posted Wed 27 Dec 2017 9.03am by Shandy284
I have suffered from this condition for 4 months. I was misdiagnosed as every GP was diagnosing it as Eczema. I went two a Dermatologist 3 weeks ago and was diagnosed with PPP.
Feeling pretty down, agitated, and frustrated to be honest. I am currently into my second week on Methotrexate. I know it takes at least a month to start working however I have tried so many steroid creams, aloe vera, Zinc tablets, antihistamines, bandaging them up, etc and the cycle just continues. Very itchy hands and feet, small pussy blisters appear, then dry out, crack, peel and it becomes so sore and painful. Then it clears and then it comes back.
I have heard smoking doesn't help so have stopped. I have reduced my caffeine intake and am in recovery therefore I do not drink.
I was wondering if anyone could give me tips on what worked for them? Temporary relief anything to be honest! I don't even know if this Methotrexate is going to work? I have days where I am ok, but it gets to me, my self esteem is struggling and it makes what I do for a living difficult.
Any suggestions would be greatly appreciated!!
Posted Thu 28 Dec 2017 3.44pm by thin-skinned
Irascible septuagenarian fed up with the psoriasis constantly at me :wink:
If you find you are struggling with metho then there is a more modern alternative called Otezla. It has done more for me in less that a year than over 50yrs of all the alternatives have achieved. Its in the expensive NHS category so you might have to fight for it as I did, but to me the fight was well worth it :thumbup:
Posted Tue 20 Mar 2018 9.09pm by Bethkin
I have been diagnosed with PPP for just over 5 months now. I was the same as u kept being fobbed off by doctors saying it was eczema and was fighting with them for well over 6 months till I begged for a dermatology referral!
I saw dermatology in November and was commenced on PUVA treatment which is not working at all! In fact tonight I have been fed up and have been in tears because of the pain and agony my feet are in!
I’m hoping they might start me on medication treatment soon and will be seeing my consultant on the 17th April.
How are u finding the medication now and did it work for u?
Any advice would be great :)
Posted Tue 20 Mar 2018 9.27pm by Mcgraw
I have the same condition for a year and a half... am booked in for PUVA Treatment this Monday and am terrified after reading everyone's comments...as I am self employed and can't afford to be off my feet...as my job is on my feet all day. So it scares me.... not sure what's best...
Posted Tue 20 Mar 2018 10.31pm by Bethkin
I have been having PUVA since November now and I am on the top regime for the most amount of time available and it isn’t doing anything! I’m still in agony daily to a point where I am in tears. I am also on my feet all day and end my 12 hour shifts hobbling down the corridors. It’s a tough one but hoping to be put on something soon alongside PUVA as I can’t carry on like this. Will keep u informed and let you know what happens ;)
Posted Wed 21 Mar 2018 10.15pm by Dionnemcleodx
Im a 21 year old hair dresser with ppp just on my hands only
Hi I only have this on my hands got put on doxycycline and it seems to help to a certin extent I am a hairdresser so it’s not very good iv had to come off it as due to start PUVA in a couple of weeks but I don’t think personally it will work but I have found that since coming off doxycycline I have been doing a lot of swimming and my hands have been controllable iv had it for over a year and only started seeing a dermatologist in October they kept telling me it was dermatitis because of my job but everything has proved it’s not I get the down and very low days where I just cry and don’t want to go to work it’s affected my nails really bad too I have no nails there considering methotrexate for me too hope this helps
Posted Tue 27 Mar 2018 3.21pm by Helen Evans
I had it on my hands and feet. Buy a foot-file and then (twice a day) file down the hard skin; give feet and hands a good soak in oily, salty water, rub off any flaky skin. Apply Exorex (straight from the fridge), which reduces the rate at which skin multiplies and stops the itching (yay), and then slather on Vaseline just before bed. I wore socks and gloves for a time at night. I needed to do this for several weeks until I could see an improvement. Hands now clear. Two smallish patches on feet which don't bother me day to day. I haven't given up smoking or alcohol and eat whatever I want in the way of good quality food. Hope you find something to work for you.
Posted Thu 29 Mar 2018 0.23am by D. Brother (edited Thu 29 Mar 2018 0.25am by D. Brother)
I have a way to stop the constant onslaught of palmoplantar pustulosis. Before starting this treatment, the PPP had come back over and over again until I couldn't stand the pain on the bottoms of my feet and hands. I had to find a way to stop this, so I considered the cause of the skin being mistaken for something foreign and our own white cells were constantly attacking the skin. I then thought that if the white cells were removed from the pustules by using a sterile needle to pop them and the fluid inside removed, it might go into a healing process right away. After popping, used hydrogen peroxide to take care of any side infection. Each new pustule had to be popped each night before bed and then a non-alcohol lotion was applied to keep the area soft as it dried up. The pustules will turn dark and then begin to heal. I had to do this for a couple of years until, now it is not recurring anymore. If I should see the tiniest white pustule on my foot, then I would pop it so it would not grow worse and heal up quickly. To my amazement, it worked..
I hope this is a way for others to find relief from this horrible autoimmune condition.
Sending love, Doris
Posted Tue 17 Apr 2018 6.16pm by Cazzy27
Hi. Has anyone had any experience with Infliximab? I might be offered it at my next appointment so just wondering if I can get any information beforehand. I have PPP on the soles of my feet and they are running out of ideas to treat it.
Posted Thu 19 Apr 2018 6.16am by Sueh72
Hello! I was diagnosed today with ppp.
I have been prescribed a ointment/ cream called Clobetasol propionate ointment 0.05% ..it has worked so far . Hope this isn't 1 you have tried and found it to not work..
Posted Thu 19 Apr 2018 7.26am by Cazzy27
Hi. No I haven't been given that one. I have just been given DiproSalic 0.05% which I have used before but it's not to be used for long periods but will help for time being. Good luck with your treatment. It's not a nice thing to have!
Posted Thu 19 Apr 2018 4.54pm by D. Brother
Read my post for a way to inhibit the onslaught of PPP. It worked for me. Now it has abated due to this type of treatment. It works, believe me.
Posted Thu 19 Apr 2018 5.44pm by Sueh72
Hello! I was diagnosed today with ppp.
Cazzy27 ,I would ask the dr. For this to try ,I seriously have not had my hands so normal looking ..in at least a year ! Couldn't hurt to ask dr to try it ,i wish you good luck also .And your right it's not a good thing to have!
Posted Thu 19 Apr 2018 5.48pm by Bethkin
D.brother I tried this for months with no luck! I was in constant pain with mine and have now been put on cyclosporine. It’s cleared up within a week and my feet look amazing!! However I have had to have my big toe nails removed today as the spots grew under my toe nails and made them ingrowing! But my feet look amazing! Would highly recommend it!
Posted Thu 19 Apr 2018 6.01pm by Cazzy27
Hi Bethkin. I also have done really well on Cyclosporin with no side effects to start with. However as time went on it started to affect my kidney (I only have one) so they had to reduce mine to 100mg a day which just isn't enough. I really wish I could have stayed on it but I should find out next week what my options are. Hope they do regular blood tests for you.
Posted Thu 19 Apr 2018 6.12pm by Bethkin
Oh that’s so sad? I’m so sorry to hear that! I hope that it doesn’t affect me too! I suffered from bad nausea and I have pains in the backs of my legs the nausea is better but the aching isn’t lol! I had a blood test before I went on it and now I’ve been on it just over a week and a half but my next blood test is in 4 weeks time?
Is that normal?
Posted Thu 19 Apr 2018 6.17pm by Cazzy27
Yes that sounds normal. Hopefully the aching will subside soon for you and glad the nausea has gone. I didn't have any of that luckily but I did when I was on Methotrexate. That was horrid!
Posted Fri 20 Apr 2018 0.04am by D. Brother
The warning for Cyclosporine reads - "WARNING: Cyclosporine is a drug that reduces the body's ability to fight illness/disease (an immunosuppressant), leaving patients vulnerable to infection or other problems (including cancers such as lymphoma)". The lasting effects of using my non-drug way of stopping this disease are worth the work. And, we can start the healing right away. This requires the constant draining of the white immune cells as they fill the pustule eating away at your own skin. There is more to do with the wounds on your feet with lotions, etc. PPP is an autoimmune disease and you just need to keep it up as a daily routine for a few years like I did. It has been years now since I last had a relapse. Good luck.
Posted Sun 22 Apr 2018 9.07am by mully
Hi everyone this is my first post. Was diagnosed with PPP about 5 months ago, my treatment was Betnovate for 2 weeks and apply neutrogena 7 time a day. I have had psoriasis since i was 10yrs old. that is well under control. Really didn't know about PPP and what I have read, its like starting all over again. I have spent years getting my psoriasis under control and my skin looking great, and then i start with this. Am moving in a few weeks, so will have to register with a new GP. it feels never ending with so many different treatments, really don't know if i can do it all over again. Am 62, but a young one i hope. Any advice would love to hear it.
Posted Sun 22 Apr 2018 9.14am by Bethkin
For starters.... welcome!! You have come to the best place for advice and support! This forum has really really helped me through the last 5 months of pain and mixed emotions!
I was diagnosed with PPP around the same time around 5 months ago. I have had PUVA treatment which didn’t work but now I am on cyclosporine medication which has cleared it up a treat! This type of psoriasis is normally brought on through stress? Maybe the moving house business has set it off again? I know stress makes it ten times worse with me although I don’t feel like I’m over stressed! This group has really helped me though! The support from people are amazing and if u have any questions or anything then this place is the best place to ask!
Posted Sun 22 Apr 2018 9.23am 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 8pm by Lizardfeet39 (edited Wed 2 May 2018 6.53pm 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 9.19pm 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 6.52pm 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 2.56pm 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 4.03pm by Helen Evans
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 1.06pm 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 2.06am 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 7.07am 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 12.57pm 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 1.18pm 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 3.06pm 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 5.33pm 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 6.43pm 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 7.46pm 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 8.31pm 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 11.05pm 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 0.08am 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 4.50am 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 6.43am 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.
Posted Mon 30 Jul 2018 5.26pm by D. Brother (edited Mon 30 Jul 2018 5.29pm 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 11.27pm 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.
Posted Thu 24 Jan 2019 1.28am by Jenaf1
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 3.39pm 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 7.55am by Isa
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.
Posted Sun 14 Jul 2019 4.48pm by Jane29
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 5.44pm 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
Posted Mon 15 Jul 2019 5.47pm by Lizardfeet39
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 3.07pm by Bethkin (edited Wed 9 Oct 2019 3.09pm 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 3.38pm 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 3.57pm 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!!
Posted Wed 9 Oct 2019 4.13pm by Cazzy27
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 7.05pm 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 7.15pm 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.
Posted Wed 9 Oct 2019 7.21pm by Lizardfeet39
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
Posted Thu 10 Oct 2019 10.03am by Bethkin
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?
It’s nice to know we can have someone to turn to for support when struggling!
Posted Sat 12 Oct 2019 11.44pm by Lizardfeet39
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 1.54am 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 2.01am 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 12.45pm 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!
Posted Thu 30 Jan 2020 12.20pm by heikefa
I suffered from psoriasis palmar-plantar for 10 yrs. Tried every cream out there, did PUVA light therapy in-patient...all did not help. Finally, I found a psoriasis specialist in Germany. Although I did not expect him to be able to help, (my last dermatologist told me to get used to it as there is no cure) I went anyway. He gave me an expensive medication called Otezla. 15,000 Euros per yr. My insurance covered it and low and behold - my hands and most of my feet blisters have cleared after 3 months. It's not perfect yet, but I am hopeful. I still have rough areas that are red and look like dry skin. I have also contracted Psoratic Arthritis and this medication helps counter this too. Don't give up. Keep seeing specialists and ask about Otezla. Side effects include, in my case, a bit of weight loss due to bowels being moved frequently. A bit of a pressure headache is felt often. Considering the benefits, I am sad this medication was not offered sooner.
Posted Thu 30 Jan 2020 3.56pm by Helsbells
This is such a soul destroying illness,I just cant believe what is doing to me as a person.This all started 2 years ago I tried lots of creams a the puve light treatment with no relief.Last year I took the plunge and went on Cyclasporin,omg amazing the whole cleared up it was like a miracle,but the the consultant said it was effecting my kidneys this was shown through the blood test I had to immediately stop it I was gutted.A couple of months went by and it all came back.I was devastated.It was suggested I tried Accretin my hands have cleared up but my feet are so sore I can barely walk,they dont look as horrendous as they did and I haven't got the thick skin and splits but my skin seems so thin on my feet it is very very painfull to walk and the skin is very sore and bleeds.I try to ke ep cheerfully as I no there are alot of people worse off and dying,but this is like being tortured every day and night.Sorry to sound so dramatic,but I wouldn't wish it on anyone.I got told by dr Tang Shim at Coventry University hospital England to basically manage it.Thanks
Posted Thu 30 Jan 2020 4.09pm by Bethkin
Heikefa was otezla available in the UK? I will have to look into this!
Helsbells I’m so sorry to hear this! I am exactly the same and have had the same treatment as you. I’ve had it for around 2 1/2 years now and ciclosporin was doing wonders but my kidneys didn’t like it. They moved me to methotrexate but now I’m getting big boil like cysts all over my face! Very sore inflamed and red and on top my feet are literally open wounds! So sore to get shoes on and off and walking around is constant nightmare! I’m only 27 and am considering having children soon so I’m seeing my consultant on the 11th feb as I don’t want to continue methotrexate if the boils and cysts on my face continue as my face looks a right mess and as a community nurse I find this highly imbarrassing seeing patients daily! I’ve also been told it’s a lifelong thing I’ll struggle with and there’s no cure but there are so many treatments to have anything is worth a try!
Posted Fri 31 Jan 2020 12.41pm by Allie
I had psoriasis in my 20s and have had pustular psoriasis for 3 months which has coincided with the onset of kidney stones. At first my GP thought the stress of kidney stones was causing the psoriasis but now due to the dehydration effects, it is thought the psoriasis is causing me to have kidney stones. I have just realised the stones/psoriasis gets worse after my hairdressers appointment to have my hair coloured (dark). I started with a new hairdresser just before the first onset and did not have a patch test. (I notice there are a couple of Haidressers posting on here). Could dark hair dye be a trigger?