Health Boards
Tue-02-09-2014, 10:30 AM
Hello Sandra, don't be down we're all with you. 
Unfortunately psoriasis and psoriatic arthritis can sometimes hit us very very hard, I know it happened to me. I coped for years just slapping on cream, hiding away, and constantly popping pain killers till one day I was covered head to toe and got to the stage of being unable to move. I couldn't dress my self, pick up a cup, I was like you say "peeling off sheets of the damn stuff" I was getting so down and grumpy that I ended up taking it out on my wife, until one day at dinner she said "Why won't you let me cut your dinner up for you" This time I didn't have a go at her, I broke down and realised it was time to get help.
Today I'm around 95% clear and just have the odd little bit that just won't go away on my legs and sometimes in my toes, my psoriatic arthritis although not perfect and I do have my days but I'm able to cope with and get around without to much bother. Sandra I got my life back thanks to finding a new fantastic dermatologist who worked with me to find what was best.
I think like Jim it's time you sat down and thought hard about where you are going with this. It may ease eventually, but at the moment you are in a vicious circle. Psoriasis gets bad, psoriatic arthritis gets worse, you get down, psoriasis gets worse, and so it goes on.
I can understand your concerns about not going onto other treatments, but trust me it's worth it just to get your life back on track so you can enjoy it again. Give it a go, you can always stop. It may take a while to find what is right for you but it will get you out of the state you are in at the moment.
Re your consultant saying "they are so new, no one knows the long term side effects!" in some ways he/she is right but my personal opinion would be to find another dermatologist as they have been around a long time and have gone through very rigorous testing before being released. Your consultant should be embrasing the new treatments not putting doubt in peoples minds.
Dates the bio's first came into being:
Humira (adalimumab) 1993
Enbrel (etanercept) 1998
Remicade (infliximab) 1998
Stelara (ustekinumab) 2007
There are new ones being tested as we speak and things are moving forward at a fast rate. The latest being Simponi (golimumab) which was started being used 2013
Like Jim said Fumaderm around 20 years.
I don't however with Jim about giving Methotrexate a try, yes it's been around since the 50s and will probably help but it's Poison in my opinion and you will regret taking it.
Sandra these are just my personal opinions and I think you will be wise to get a better dermatologist, get onto one of the above claim your life back and enjoy it.
And yes you MUST push them, keep at it go to A&E and tell them your life is ruined and you cant move. I'm not sure if Scotland is under the NICE "National Institute For Health And Clinical Excellence" group but these article are worth a read:
Psoriasis on NICE quality standards
NICE issues new guidance for GPs treating psoriasis
NICE Quality Standards for Psoriasis
It's your body that that you trust them to play with, so make sure you're in charge of the final decision.
At the end of the day you be assured there are members here that will listen and you never have to apologise for ranting on here.
Regards.
Fred.
Unfortunately psoriasis and psoriatic arthritis can sometimes hit us very very hard, I know it happened to me. I coped for years just slapping on cream, hiding away, and constantly popping pain killers till one day I was covered head to toe and got to the stage of being unable to move. I couldn't dress my self, pick up a cup, I was like you say "peeling off sheets of the damn stuff" I was getting so down and grumpy that I ended up taking it out on my wife, until one day at dinner she said "Why won't you let me cut your dinner up for you" This time I didn't have a go at her, I broke down and realised it was time to get help.
Today I'm around 95% clear and just have the odd little bit that just won't go away on my legs and sometimes in my toes, my psoriatic arthritis although not perfect and I do have my days but I'm able to cope with and get around without to much bother. Sandra I got my life back thanks to finding a new fantastic dermatologist who worked with me to find what was best.
I think like Jim it's time you sat down and thought hard about where you are going with this. It may ease eventually, but at the moment you are in a vicious circle. Psoriasis gets bad, psoriatic arthritis gets worse, you get down, psoriasis gets worse, and so it goes on.
I can understand your concerns about not going onto other treatments, but trust me it's worth it just to get your life back on track so you can enjoy it again. Give it a go, you can always stop. It may take a while to find what is right for you but it will get you out of the state you are in at the moment.
Re your consultant saying "they are so new, no one knows the long term side effects!" in some ways he/she is right but my personal opinion would be to find another dermatologist as they have been around a long time and have gone through very rigorous testing before being released. Your consultant should be embrasing the new treatments not putting doubt in peoples minds.
Dates the bio's first came into being:
Humira (adalimumab) 1993
Enbrel (etanercept) 1998
Remicade (infliximab) 1998
Stelara (ustekinumab) 2007
There are new ones being tested as we speak and things are moving forward at a fast rate. The latest being Simponi (golimumab) which was started being used 2013
Like Jim said Fumaderm around 20 years.
I don't however with Jim about giving Methotrexate a try, yes it's been around since the 50s and will probably help but it's Poison in my opinion and you will regret taking it.
Sandra these are just my personal opinions and I think you will be wise to get a better dermatologist, get onto one of the above claim your life back and enjoy it.
And yes you MUST push them, keep at it go to A&E and tell them your life is ruined and you cant move. I'm not sure if Scotland is under the NICE "National Institute For Health And Clinical Excellence" group but these article are worth a read:
Psoriasis on NICE quality standards
NICE issues new guidance for GPs treating psoriasis
NICE Quality Standards for Psoriasis
It's your body that that you trust them to play with, so make sure you're in charge of the final decision.
At the end of the day you be assured there are members here that will listen and you never have to apologise for ranting on here.
Regards.
Fred.