Frustrated and Soooo Fed Up!!!

[*Niki*]

It's been a bad day today.  
The sun's been shining and i've been sitting indoors looking at it with dread as sunlight makes pustules form on my P (a total stomach turning sight)  and causes P to appear on non-affected areas (apparantly i'm one of the 5%-great!!!!!)

The P on the backs of my hands to my elbows has gone into overdrive; bright red, cracked, flaking, sore and itchy to the point of distraction.
I'm typing this with arms and hands wrapped in cling film and stockinette!!

I have an appointment to see my derm on the 22nd of this month but thought i'd enquire about an earlier one. Bad decision!
I was met with  major attitude, incorrect information and ended up in floods of tears.
I've sat, most of the day, thinking "what the hell am i going to do next?"   :-/

I've had loads of topicals (most of which burn, esp dithranol and i'm talking paediatric strength .0625% dithranol with betnovate). I've had PUVA (got to 12 mins and burnt big time-never been given it again), UVB for 14 seconds (covered from head to toe & and extra 3 wks in hosp-polymorphic light eruption they called that little episode!)

I've had hydroxurea (stopped working) tigason (hairloss so was stopped) sulphasalazine (allergic reaction and stopped), cyclosporin (experienced bleeding so was stopped) tacrolimus (kidney damage and was stopped) mtx (massive hairloss and stopped) Raptiva (huge flare) Enbrel 25mg (not strong enough even with mtx) Infliximab (clear-ish for 2 weeks but not good long term) now on Enbrel 50mg and progressively getting worse and worse, sadder and sadder.  :'(

I know there are many people trying desperately to have these biologics and it has been said that i am lucky to have had them and i am, or am i?
I've had the three that i know of and none have worked, am i lucky to have had them and failed? Or am i unlucky to have had them and have no hope left?  :-/

I'm usually really good at fighting my feelings with my P but now and again (and this is one of em) "it" gets the better of me and i really don't know what to do now.
The attitude of the dermatology manager has had a real  affect on me, which hasn't helped and i have lodged a complaint with the chief exec of the trust ......again.
But......
I only see this as more trouble for me, i'm already known at the hosp for being "difficult." This means i open my mouth and have an opinion about my own skin and challenge decisions made by docs who have never seen me or my P before but think they know best cos they've bin to med school!  :-?

Is there anything that anyone's had that i haven't that i could maybe try?
I'm sick to death of hearing "you have very difficult psoriasis and very sensitive skin and the two don't go together"  You don't say!!!  

[Nikkita]

Hey Nik

Just want to give you a big hug and some support and a clap on the back for being "difficult"(goes with the difficult P!) You hang in there and kick up a fuss til you find something that works for you!! I wish I could help more but I believe in Alt route, diet etc, but then my P is fairly mild.  
Hope u find something soon,let us know  [smiley=smileyhug.gif] XXX

[*Niki*]

Thanks Nik,
My derm says there's no link with diet etc.  I once saw a homeopath, nothing happened with the P. When i was a kid, everyones "remedy" was thrown at me; brewers yeast and honey goats milk (2 i can remember) and still the p raged!!
Guess me and my P haven't finished our war yet. I'm pretty confident i'll win in the end and altho i know this aint gud, the bottom of a pint glass goes quite a way to making me feel   at the moment (until i wake up that is)
I'm just pee'd off big time at the moment and rebelling-i'm finding some bizarre satisfaction in "not helping myself" at the moment!  
It'll pass and if it doesn't well....................  

[guitarman]

HI niki

  Im sorry youare going through such a bad time at the moment, i wish i could help you , i cant think of anything at this time but all i can say is that i wish you succes in hopefully clearing hun
i feel for you   [[[[[[[hug]]]]]]]]

  ANDREW

[*Niki*]

HI niki

  Im sorry youare going through such a bad time at the moment, i wish i could help you , i cant think of anything at this time but all i can say is that i wish you succes in hopefully clearing hun
i feel for you   [[[[[[[hug]]]]]]]]

  ANDREW

Thanks for that Andrew
Don't happen to know anyone with a "magic wand" do ya?   (the times i've heard that, and the times i've wished.......... )

[Blinking]

(((((((((((((((((((((nikik)))))))))))))))))))))

A big big gentle hug for you.

You really are going through hell at the moment and I just wanted to give you a hug.

There has to be a combination out there for you.  Please try not to give up and I know that is not easy. There are other biologics still to try ie humira.  And I know that does not help you right now.

Please keep speaking up for yourself in the hospital as you know your body and skin far better than they do.  I was told by one particular reumatologist at my first hospital that I would be in my wheelchair for life and because I am allergic to anti-inflammatories and some dmards and my pa is so complicated and severe that they can only ever offer me mtx.  grrrrr so please just because you are complicated dont let them FOB YOU OFF.

Please take care
Love
Bel
xxx

[*Niki*]

Thanks Bel,
I'm glad i'm NOT the only person who has "a voice" tho' at times it seems like it.  
Niki x

[LouiseB]

(((((((((((Hi))))))))))))

Sorry you're suffering so much.  I had a similar break out last year.

I'm not a fan of the toxic drugs but had reached a stage last year when I needed treatment.    I was put on Neotigason and although have suffered side effects my P is clearing and now feel much better.

My derm also told me nutrition and supplements wouldn't help but I suspect that is because he has no knowledge of either.  I've gone through a major change of lifestyle and re-instated my healthy diet in the past year and think this has gone a long way in helping me too.

Take care and good luck with the appointment, remember it's your body and not the doc's - you deserve the right treatment for you.

Louise XX

[Sanchez]

I agree with everyone else - keep fighting & don't stop until you find the right treatment.  It's the GP's job to help so definately don't let them fob you off, they chose the job and they take home our tax pay everymonth as their wages so give 'em hell if you have to.
Good luck and big hugs - you are getting a lot today arent you?
 

[chrisis]

So sorry to hear how bad it is at the moment. I too am one of the 5% with appalling p on my hands and wrists, and am also sun sensitive. You are the first person I've come across who also gets blisters under their p after only short exposure to uva.
A few weeks ago I went to the Photoallergy clinic at Hope Hospital where  was given really good advice
Along with the normal advice to wear non see throughable ?? gloves and to use total block sunscreen (available on prescription) I was told that UVA and B rays pass through glass. I did not  know this. I have since bought a clear film that they recommended and put it up on some of the windows of my house and also  the front side windows of my car. I was told that the windscreen was already uv protected in cars.
All this has helped enormously!!!!!!!
This is not to say the problem has gone away. I have been on cyclo for ten years and my kidneys are not in good shape. Like you I flared badly on Raptiva , Lost my hair on others and went berserk on Puva. I have been waiting for 6 months to get funding for Enbrel, which I was hoping was going to be THE ONE. Reading your message and realizing how similar we are, this may not be the case.
I know how bad you must feel at the moment, as over the years I have lost it big time and howled and raged at everybody.
There is always a chance though and dont give in to despair. Do as I say not as I do
Very gentle hugs and handshakeChristine