Hello from wooleyb

[Wooley]

 Hello everyone......

Thanks for allowing me onto the group, I stumbled across it last night.......it is great to see that there are so many people on here willing to help/listen and share experiences....

So April this year, completely out of the blue, I started to get pustules on my hands and feet.  I was originally misdiagnosed with pompholyx , was given a steroid cream but it just got worse, went back to the doctors who suspected palmoplantar pustulosis psoriasis  (PPP).  Following consultation with Derm Consultant I was indeed diagnosed with PPP.  I have never had any experience with psoriasis, no family members have ever suffered so feel a bit like i have been hit by a bus to be honest!!  

I think the main thing for me is that i feel totally out of control with all the medications/lotions/potions etc, I understand it is a long process trying to find something that works for you personally but I just feel that everything is out of control......  seems every time i go to the hospital i am told to stop taking this and start taking that.  GP prescribed Calcitriol (didn't see any improvement using that) a Coal Tar lotion and Epaderm (which is disgusting), then a month later the Consultant prescribed Lotriderm and Protopic and Dermol 500 lotion then i am not kidding you 10 days later (last Thursday) i had an appointment with the nurse and she tells me to stop taking Lotriderm and Protopic and instead take ClobaDerm and another Coal Tar treatment which is much stronger.......Not only has this all been confusing, but at £8.60 an item would have cost me around £120 so far for all this medication, luckily i got a pre-payment prescription card very early on....but now I also have a bathroom that resembles a pharmacy

So since i started taking ClobaDerm my feet have become unbearable and feels like i am walking on broken glass and the upshot of this is i have stopped using everything prescribed and am using a normal everyday moisturiser....the next step for me is PUVA which i start next week so fingers crossed that helps the condition somewhat.....Has anyone else had this treatment?

Will definitely be looking for advice on natural lotions and potions available or what helps other people on the group.....

Apologies for the huge ramble but boy does it feels good to blurt all this out.....so thanks for reading  

[jiml]

Hi wooleyb   to the club.....don't apologise for rambling....if you read through hear you will find you're not alone ...we all ramble and unload our concerns here.......you are among a friendly group of fellow sufferers so most will understand the frustration you are feeling......it does though take a while for our health system to go through all the cheap options which rarely do anything long term for the disease before they find a treatment that works for you

I have had puva in the past it was very good but the effects were never long lasting for me and I needed a course virtually every year and as soon as the course finishes my psoriasis started returning within weeks

You will unfortunately have to run through the dermatologists list of treatments and hope that some will work for you quickly. But you have to fail on the cheaper things before they will give you anything else....
Hopefully PUVA will get you clear and it will last.....we are all different and have different reactions to drugs so what works for you might not work for me..
My current tablets have kept me clear for around 6 years now ....so there is hope for you for the future there are so many treatments on the market now that there will be one for you

There is a corticosteroid treatment available that is impregnated in strips for cracked hands and feet
I can't recall it's name though

A great way to stay in touch with the latest advances in treatments is to subscribe to our free monthly newsletter Groups

[jiml]

Found the name of the tape it might be worth asking your dermatologist if Cordran tape is available to you RE: Hello from Bob D

[Fred]

Hello wooleyb   to Psoriasis Club.

Sorry to hear you have been diagnosed with palmoplantar pustulosis psoriasis, but at least you are seeing a dermatologist which is important. I also understand your frustration, but like Jim said "They have to follow protocol" and it can take time to find something that works, but the good news is that things are moving along a lot faster today then ever before with different treatments. So if ever there was a good time to get psoriasis it's now.  

As for natural: I'm a big fan of Coconut oil, you can read more about it here: Coconut Oil

I can't help with other natural treatments as I think they are to difficult to follow and don't have a very good long term efficacy. But you may find something here that could help: Natural Treatments For Psoriasis

The biggest advice I could give would be to accept you now have psoriasis for life and try to keep positive. It can be managed though can take time to get there. Don't hesitate to ask questions, none of us our doctors but we know what it's like to live with psoriasis and can offer advice and support.

Good intro by the way, and don't worry about having a ramble you will find most of us do. I would suggest you have a look in the [Group Specific] board you will find plenty going on to take your mind off things and a great bunch of people. (I'm the only sensible one though)  

Regards.

Fred.

[Wooley]

Hi Jiml / Fred
 
Thanks both for replying to me and thanks for your words of advice / encouragement and of course for reading my ramble!!  Yes, I think I have just got my head around the fact I have it life now but generally I am a happy go lucky person so I will be sure not to let it get me too down in the dumps about it.  To be fair the consultant said that it would be a lengthy process finding the right treatment for me so I will just have to try and be patient and wait until that time comes along…… Fred I have read about coconut oil so will definitely take a look into that and thanks Jiml for the tip on Cordran, given the current state of my feet that would definitely be worth pursuing.
 
I will definitely have a look around the topics including ‘off topic’, glad to see there is a at least one sensible person on here Fred ?  I will also subscribe to the newsletter Jiml so thanks for that.
 
Thanks again both for making me feel so welcome and for welcoming me into the group ?

[Caroline]

Hello Wooleyb,

Welcome to Psoriasisclub !  

As Jim and Fred said, ranting is allowed in the club.   It is fully understandable and this is the place where everyone understands why. Still it is not a sad, but a joyful place to be. Most of the members are more or less insane, except for Fred (Do you really believe that   ).

If you read on through the massive pile of posts of experiences then I think that the mainline is that with a bit of Psoriasis, you can handle this with a bit of lotion and potion, but when the psoriasis really spreads then that makes no sense anymore, then you really need something that controls your immune system.
Also UVA is only a step in between and not long lasting. The effect is that it boosts up the Vit.D , but you can also use some xtra Vit.D as a supplement, for me that helps my arthritis.
Almost all members here have  finally ended up with systemics or biologicals.

I wish you a good time over here.


Caroline

[D Foster]

Hi wooleyb . welcome to the best place you will ever find on P and PsA , there are no adverts on here with nobody pushing rubbish and magic cures like some of the other sites.
If you want to rant go ahead , if you want advice go ahead and ask , we are all in the same boat and we know what it's like so any answers you get will be from people who know what the problems are and will be truthful , mind you most of the inmates are barmy but don't let that put you off. There is more information on this site than anywhere else that I know so have a good look around ask if you can't find what you are looking for . Bear in mind that we are all different and what works for one may not work for another and that goes for side effects as well.
Coconut oil is really good and if you look it's used in a lot of other medications .
Best of luck , just ask away and one of the best ways to bottom this sod of a problem is to realise that you are not alone .

Dave

[jiml]

Hi Jiml / Fred
 
Thanks both for replying to me and thanks for your words of advice / encouragement and of course for reading my ramble!!  Yes, I think I have just got my head around the fact I have it life now but generally I am a happy go lucky person so I will be sure not to let it get me too down in the dumps about it.  To be fair the consultant said that it would be a lengthy process finding the right treatment for me so I will just have to try and be patient and wait until that time comes along…… Fred I have read about coconut oil so will definitely take a look into that and thanks Jiml for the tip on Cordran, given the current state of my feet that would definitely be worth pursuing.
 
I will definitely have a look around the topics including ‘off topic’, glad to see there is a at least one sensible person on here Fred ?  I will also subscribe to the newsletter Jiml so thanks for that.
 
Thanks again both for making me feel so welcome and for welcoming me into the group ?

I'm glad you found us wooleyb....I hope you stick around, you will find it a great place for learning more about the life sentence we all have, in a happy friendly environment ....and should you visit the off topic section you will find there is only one sane one here "moi"

If can also recommend coconut oil

[Wooley]

Hi Caroline 

Thank you very much for your welcome and again for reading my ramble!!  It's not something I do often but it felt good to get my frustration out there so thanks for your kind words. 

I should fit into the club very then well if most members are more or less insane   Ah Fred, well as a newbie i can only believe what he tells me (for now lol) I guess!! 


As for my PPP, I completely agree with what you are saying, they are already talking to me about a drug called Acitretin and have given me a leaflet on it, so fully expect to be given that at some point in the near future...... Because I have PPP, the hospital have also asked me to consider going on a trial drug/placebo in January, it is called the APRICOT trial but to be honest as this is all new to me at the moment, I will revisit again in January and decide then.....

Thanks again Caroline 

[jiml]

Looking at the detail of that trial it looks like it might be worth a try and hope you don't get the placebo

But the drug is successful apparently for rheumatoid arthritis ....and there is hope that the cells it blocks are the same as those that cause ppp
Good luck