Psoriasis - PLEASE HELP

[thecook]

Hi there

Haven't been on mumsnet for long but I discovered the health board tonight.
I have a condition called planar psoriasis, a condition that affects the hands and feet (but in my case the feet!). I have had this condition since January 2010. I am 41, very healthy and was a regular gym user until the situation got so bad.

Basically psoriasis covers the soles of my feet and a bit of my left hand (that is nothing to worry over). After a series of blood tests I started seeing a dermatologist in October 2010. I have tried so many creams, Dovobet, Epaderm and all those beginning with a D! I have also gone through a course of UV treatment.

Fast forward. It is so sore and itchy. I bathe my feet daily in a cold tar soap solution. I apply the cream liberally. I cannot sleep at night cos of the soreness and itching. I am on JSA at the moment and desperately seeking work. My only experience is in bar work and office. I do not know how I could stand all night in a bar. Just putting my foot down in painful. I had to give up the gym in March cos I could not do all the aerobic stuff cos I was in so much pain.

Are there any other mumsnetters with this condition? Someone wrote into Dr Hilary in Fabulous magazine (The Sun) last sunday with the exact complaint so I cannot be the only one.

Just looking for advice or personal messaging. Feel free to PM me with your name and number. I will happily call you back at a time convenient with you.

Thank you for your support.

OMG just read the last paragraph! I sound like a medical bloody researcher. What I meant was that I have tons of free minutes on T mobile so I am happy to ring anybody who has this condition to discuss treatments!!!

Coconut oil helps me with itchiness £3 odd in superdrug in hair aisle well worth it

Do you use hormonal contraception by any chance? I had this form of psoriasis so severely I could not walk: when I had my Mirena IUD taken out, the psoriasis went. Just a thought.

I have had scalp psorasis and my BIL has it on his limbs. His is worse. I think the scalp is less severe although can be fairly horrible to live with.

We both find stress is a major cause of flare ups. For me regular exercise helps - could you do Pilates or yoga perhaps?

Coal tar shampoo makes mine a lot lot worse. It's too harsh. I use really natural products which are a lot better.

BIL is exploring dietary causes and finds limiting his dairy intake helps. I have noticed mine flares up after alcohol.

My scalp was much better both times i was pregnant and / or bf. I assume therefor hormones play a part.

You could try a diary to see if there are patterns of hormone/food/behaviour you can link to flare up.

HTH.

Poor you!
Have suffered with this for 20 years but thankfully never on hands and feet.
My dh though suffers from eczema on fingertips and its just terrible how disabling it can be.

The hardest areas to treat for me have been on scalp. It got to a point where i started loosing patches of hair.
By pure chance i came accross a range if "natural" products based on a plant called mahonia.
After years of using all the topical treatments you mentioned above, i was very impressed with the result.
It pretty much cleared it within 2 weeks.
Here is a link to a uk based lab ( am abroad so used a different brand)
taylor-jackson.co.uk/the-m-folia-story/psoriasis-research-m-folia/

Worth a try?

Have also learned over the years to keep my skin moisturized. This helps a lot and is the only brand that keeps my flare ups and my husbands hand eczema at bay.

www.qvskincare.co.uk/content/QV_Bath_Oil.aspx

SkiBumMum, same experience here, alcohol AND tobacco definitely seem to be aggravating factors.

Eating a wholesome diet surely helps as there has something to be said about additives exacerbating all sorts of allergies and creating imbalance in the body.
I've noticed that many times over for my allergies (respiratory) and my skin (and on my kids mood!)

This runs in my family and my first cousins has the same condition as you. On hands, feet, ankles.Quite bad and for years.
She has been using this off the shelf product and swears by it.

My husband uses this which is a very trusted brand and is the only one that works for him after 2 years of trial and error.

This things are pricey though and you do need to get through quite a lot in a day.

Liquid parafin preparations are just as good as emollients and to lock in moisture. The Dr advised all oils are best applied on damp skin and I do agree it works better.

Good luck.

Get the dermatologist to prescribe zinc coated bandages, or as I cal them magic bandages.

Have you tried eliminating all - and I do mean all - refined sugars from your diet? My psoriasis is all but gone since I did this. Maybe worth a try?

Never posted before, but for a few years psoriasis was the bane of my existence. Elocon cream (generic name is Mometasone) was my friend and saviour (I'm in the US, but you should be able to get it from your dermatologist). My doctor also told me to sit in the sunshine without sunscreen for at least 10 minutes a day - I lived in a very sunny, hot area at the time, and that helped a great deal.

I used to get a patch on my feet. And it is hell. Try and get the GP to refer you to a dermatologist as there are so many creams you can try and a specialist will hopefully be able to identify what will work best for you.

Diprosalic ointment works for me. I just need to fell that initial soreness on the soles of my feet angle this stuff does the trick.

If you have not tried it. It may be worth asking your GP for a prescription.

I had psoriasis for 20 years, on feet, legs, scalp and one elbow. It started suddenly after a nasty chest infection.

I saw some improvement when I brought my B12 levels up to optimum, more improvement when I stopped using anything containing sodium lauryl sulphate and then it completely went once my underactive thyroid was treated.

Until then, nothing I had had on prescription had made the slightest difference.

D

Thank you ladies for your kind replies. I posted a long post a couple of days ago and lost it!

My doctors appointment isn't till the 7th June. I had it in my head that it was yesterday! I was waiting over two weeks for it!

Lesbianmummy1 - I have purchased the coconut oil from my local chemist that stocks it. I am going to give it a try very soon. I have given up with the coal tar soap as it was very drying.

Prolesworth - I am not on any contraception. I am 41 and rely on condoms (when I ever do it which is very rare!), but thank you for the thought. I can see where you are coming from love.

SkibumMum - The diary seems a great idea. I think it is linked to stress. I have had a lot these last few years. Unemployed, a very long standing court case regarding my property etc. I may rejoin the gym and try yoga or pilates. I always dismissed them before because I liked my circuits and aerobics.

laptopwieldingharpy - Thank you for your links. I did not know about applying the creams to damp skin! This is news to me. I always waited till my skin was dry. I think there could be a link with tobacco. And yes I am a smoker. Only light though, but maybe I should stop.

sashh - I see my dermatologist at Chelsea and Westminster hospital on the 11th July. I had never heard of these bandages, although I have bandaged my feet with Sainsbury's Basics bandages when they have been particularly painful. I wonder if I could source these on my own because the 11th of July is over 5 weeks away.

LentillyFart - I think this is a good idea. I normally have an excellent diet. Very few processed foods and I usually manage my five a day. I am not sure what constitutes refined sugar though (I know that sounds a bit thick). Maybe I could get a referral to a nutritionist. I am sure it could be down to something in my diet.

WhatWouldJoanJettDo - Now I have never heard of the cream you mentioned. It is now recorded in my diary. I think you are right about the sun though. A neighbour of mine advised this. There has been a heatwave in the UK for the last week or so (gone now though!) I made sure I sat outside with my feet pointing skywards for at least an hour. It helped a little bit. Maybe if I win Euromillions tonight I could afford a couple of weeks in Turkey and it would go completely!

ButHeNeverDid - I have not heard of the cream you suggested (now wrote down in my diary!). I am under a dermatologist but she said treatment was very much trial and error.

RockinD - Now this is very interesting. I too had a bad chest infection before my psoriasis started. Also your comment about sodium lauryl sulphate is very interesting. I see this as a very common ingredient in a lot of things. Can I ask you about your underactive thyroid? How did this get diagnosed?

Thank you so much ladies for your replies. I told my mum and dad about how astonished I was that all you lot took the time to reply. Thank you again and I will take your suggestions on board and keep you posted. Much much appreciated.

The bandages are called Viscopaste PB7, I use them in conjunction with some cream that is prescription only.

Be warned they are messy, and you need plain bandages to put over the top so you don't get white paste everywhere.

If you get some you need to pleat the bandages so that they are not too tight.

It looks like they are prescriptino only - but you could always try ebay

www.lloydspharmacy.com/en/viscopaste-pb7-bandage-7-5cm-x-6m-s-n-85289?utm_source=Google&utm_medium=Product&utm_campaign=Product&gclid=CJ7BpMT5rrACFcshtAod0keITA

Sorry for delayed response. My UAT was diagnosed by an endocrinologist in 2010.

D

RockingD - I have mentioned the underactive thyroid to my GP. She thought it was unlikely as I have no metabolism problems.

Sashh - I asked about the bandages when I visited my GP. She said I have to get them on prescription and as they are very messy to use I have to see the dermatology nurse who will show me how to use them.

Off to see the dermatologist on Monday. I am using coconut oil at the moment. Tis helping a bit and only £1.30 from the chemist!

My niece is 6 months pregnant, has itching feet esp at night and scratches until they bleed, it is so severe. Dr has given her Oilatum to use in her bath every night for 30 mins minimum but it is of limited assistance. Has anyone else had this problem? This is her first baby and she and her husband live in Oxford. I have to say both suffer a lot of stress so it could be linked to that, but I'm desperate to find something to treat the symptom as we can't do much about possible cause.