Desperate to try some new treatments!

[terri24]

I have had plaque psoriasis for about 2 years. It started with a small bit on my knee and now have it on both elbows, both knees, on my ears and on my scalp. I have also developed nail psoriasis in the last year.

I am well aware that my case is by no means as severe as others I have seen, but it has taken me a while to come to terms with the fact that there is no 'cure'. I have tried Dovonex cream and Betnovate to little avail and have now settled with Dovobet gel which combined with Aqueous cream seems to keep my arms and legs under control unless I'm having a particularly stressful time. I was given an ointment for my scalp which until now has been working ok with regular application. However, in the last few weeks the itching has increased and my partner says that I am developing more patches on my scalp.

Depression about the situation is really starting to set in; I could cope when I thought it was only small patches, but it seems to be spreading quickly now. I have also recently been diagnosed with gastritis which is putting me under even more stress. I am desperate to find a treatment for my scalp which will prevent it from spreading, potentially down my neck. I have seen a number of GPs who have all dismissed me - the last one said there was nothing else they could give me and that I would just have to put up with it. I would love to see a dermatologist, but am nervous about kicking up a fuss at the doctors.

Any advice or tried and tested treatments would be greatly appreciated!

[lilactime]

kick up a fuss and demand to see a derm ! there is no cure but there is more than just creams and topicals !

[nikkij31]

Hi, I can sympathise I had this awful thing and wanted a diagnosis but when i got it didn't realise it was a lifelong condition, i am also using dovobet but its quickly becoming resistant to my ppp, my dermotolist (cost £150) was pretty useless and just gave me a load of printed stuff of the internet which frankly i had already read myself, i am slowly coming to terms with the fact there is no quick fix or cure for this and am also struggling with the spreading to other parts of my body, diets, drugs and alternative therapies?...it's whatever suits you but personally i havn't heard many sucess stories...a month ago i would have told you dovobet was jesus...but deep down i knew it was temporary relief, still slapping the bloody stuff on twice daily though in hope it will perfrom same magic it did a month ago but new blisters and skin falling off defies this. I'm now almost a yr into this disease and finally coming to terms with no amount of postive thinking, diet regime or streroid applications helps, I do however think stress, acceptance and altering ur lifestyle will play a big part, i still try to continue to do all the things i did before and pay the price, cooking xmas buffet and dinner for allt family have left my hands blistered and swollen, think acceptance is a big part of this...between flares its easy to think i'm ok and i do too much thinking i'm back to normal, what i need to realise is the people around me who i'm cooking, cleaning and running about for are healthy and i'm not and whilst they sit back and enjoy it i'm actually storing up days of suffering for them...sorry went off on bit of tangent but yr post reminded me of my thoughts 6 mths ago...Nikki

[MULLINDE]

Hi Terri and Nikki,

I have had P for about 13 years. I have been through the whole regime of topical treatments such as Betnovate and Dovobet (and loads more) in the past, and really wish that I hadn't used them. Or, more importantly, had been given a better advise and understanding of how to use them.

Firstly, they should only be applied thinly - not "slapped on".

They are not appropriate for long term use.

When you come off them you need to do it slowly. Don't just stop, or you make get a great big re-bound.

I am pretty sure that if you search this site you will find loads of good advise, but mine would be to moisturise as often as you can, avoid the steroids, and find yourselves a good Derm. Hmmm........ an easy thing to say but not an easy thing to achieve.

Living with P is a nightmare, but millions of us have to do it.

Regards,

Daryl

[mistress_disturbed]

 :-[Hi Terri and Nikki,
Welcome to the mad bad world of PHO, a place where you can come to laugh, scream or cry with people who know exactly what your going through. Its a place where a virtual hug and a cup of tea can work wonders.
Ive had Psoriasis for well over 23 years now and yes im with Mullinde on the fact you need to get your Gp to send you to a Dermatologist. Terri next time your Gp tries to fob you off throw the patients charter at them, we all have a right to be assessed by a doctor, but for some strange reason some Dr's like to hold on to the money the local PCT gives them.
Depression sadly is a black cloak that most of us with P or PA have had with us at sometime or the other and sadly we have lost a few good ones along the way.
As with everything what works for some will not always work for other's, im afraid its a case of suck and see. I have test driven virtually everything on the market from Dead Sea Salts through to Herbal remedies and nothing budged it. I ended up on Cyclosporine as mine just went haywire, but my Psoriasis is chronic unstable plaque, never give up hope. I find Lush Dream Cream and Dream Wash very calming and my skin likes it  .
When i was first diagnosed i didnt have a clue what i had no one tell me anything when i was hospitalised was when i finally worked out what i had and what was wrong.
Remember Nikki and Terri you are not alone in this and having P or Pa makes us special, and your always have friends in PHO.

Good Luck

Md xx

[terri24]

Thankyou for all your comments! They have made for an interesting and informative read.

My psoriasis seems extremely sensitive to stress, but my job as a teacher means that I am often under a lot of pressure so avoiding this is difficult. I will definitely take the more regular moisturising on board as I have always suffered with dry skin and had eczema as a child, so I think my skin will respond well to this. I realise that this condition requires a trial and error process, particularly when going down the alternative treatment route.

It is nice to know that others have had a similar struggle with getting a doctor to take this condition seriously. After about the third visit to the doctor (concerning psoriasis) I was given the impression that I was being a bit of a pest. Since then, I have been wary about going back. It has even come to the point where I am running out of scalp solution, but am afraid to go back for fear of being treated like a nuisance! After reading all your comments, I have renewed courage and am going to make an appointment and insist on being referred to a dermatologist. After all, I pay my taxes like everyone else!

It's reassuring to, at last, know that I'm not on my own :-)

[MULLINDE]

Hi Terri,

Good grief, your GP sounds just like the one that I had until I changed.

Whenever I went to see him about my P, he would insist on taking my blood pressure. It didn't seem to matter to him that I couldn't hold a knife and fork. Are GPs funded by BP pill manufacturers? It makes me wonder!

Anyway, make a real pest of yourself until you get the care that you deserve.

Regards,

Daryl

[nikkij31]

I had no less than 14 dr's appts before i was referred, i found pharmacists to be more help than gp and it was their advice that i should insist on a referral that even made me utter the word dermotologist to my gp...it is hard though and i said before i went to dermotologist i wanted no more steroid creams but i still sat like a dumb mute and accepted them so am as much to blame, need to go back to gp now as i knew so little about psoriasis before i opted for private treatment thinking i could take a tablet to cure it, now know private treatment will cost me a fortune so need a referral back to nhs but dreading going back to gp, on postiive side had a lovely day got up stayed in pj's till lunchtime and watched the shawshank redemption(my fave film ever) bathed, wrapped hands up and watched a chic flic this afternoon before ordering a takeaway...slapped on loads of moisterisers and had the laziest day i've had in years...and for once i didn't feel guilty, hoping my hands appreciate the rest and return the favour in the morn cos these days are few and far between..Nikki 

[terri24]

I agree Daryl! I am sure my doc must have ulterior motives and/or is bone idle! I hope your day of relaxation does your hands some good Nikki :-)

My arms have been painful today and my scalp is driving me crazy! Was having a read through some other threads and saw the names of a few good shampoos, so might have a change. Only realised the other day that I was using a completely inappropriate shampoo that was full of things that were aggravating my scalp! There's another thing my rubbish GP forgot to mention - guess I can add it to the list!

[MULLINDE]

Hi Terri,

Actually my hands are pretty good at the moment, but no thanks to the GP that I had all those years ago. I now have had a fantastic Derm for the past 3-4 years and she really looks after me.

This may sound rather disgusting but I try to shower and wash as little as possible. I used to shower at least once a day but it just played havoc with my skin. I believe, or though I am not sure, that we produce natural oils to protect our skins, just like other animals. So why wash them away?

Anyway, it works for me. And, NO, I do not smell! You can actually get your skin and hair to come to a sort of "balance".
Regards,

Daryl