Psoriatic Arthritis survey part 2

[metalblue]

The top 10 research priorities in psoriatic arthritis: a James Lind Alliance Priority Setting Partnership

AbstractObjectives. To identify and prioritize the top 10 research questions for PsA.Methods. The British Psoriatic Arthritis Consortium (BritPACT) formed

academic.oup.com

The final abstract has been finished and its been published in the Oxford Academic journal.

I never imagined at the start I would get my name on the final piece alongside Profs and Docs. Im well chuffed.

A huge thank you to all those who took part and sent messages of support , I am a proud lad this morning.

Brilliant mate. Well deserved

 

[Rascal]

Brilliant mate. Well deserved

Thanks pal.

 

[Scottyboi]

My mum had aggressive rheumatoid arthritis from her 30s till she died at 50. Was an awful disease she had metal bars in her wrists 2 new shoulders she was so brave.

My dad was her full time carer, I hope research and treatment has started to improve for arthritis I wouldn't wish it on my worst enemy.

Well done Rascal you're a good man.

 

[Rascal]

My mum had aggressive rheumatoid arthritis from her 30s till she died at 50. Was an awful disease she had metal bars in her wrists 2 new shoulders she was so brave.

My dad was her full time carer, I hope research and treatment has started to improve for arthritis I wouldn't wish it on my worst enemy.

Well done Rascal you're a good man.

Thanks pal. I am not well up on RA as its a different disease to PsA but I do know its incredibly painful and and very aggressive. There are new drugs coming on stream called Biologics that I am told modify cells called Interleukins and a couple of these new drugs have been successful at slowing the aggressiveness of RA. Sadly they are too late for your obviously very brave mum, but there is hope for newer diagnosed people. I have found a glimmer of hope helps enormously with the day to day struggles of life.

There is also a project based at Salford Royal that I am part of as a patient advocate called the Jigsaw. This hopes to encourage all people with any form of arthritis and other muskoskeletal conditions to share their medical data with researchers so that they can monitor patterns of disease in the hope that they can better predict disease progression and as a result treat earlier. Which if a success will be of huge benefit to many people across the country. Its in its early stages at the moment, but there is a real buzz around this project as it could well be a game changer. Fingers crossed,

 

[Scottyboi]

Thanks pal. I am not well up on RA as its a different disease to PsA but I do know its incredibly painful and and very aggressive. There are new drugs coming on stream called Biologics that I am told modify cells called Interleukins and a couple of these new drugs have been successful at slowing the aggressiveness of RA. Sadly they are too late for your obviously very brave mum, but there is hope for newer diagnosed people. I have found a glimmer of hope helps enormously with the day to day struggles of life.

There is also a project based at Salford Royal that I am part of as a patient advocate called the Jigsaw. This hopes to encourage all people with any form of arthritis and other muskoskeletal conditions to share their medical data with researchers so that they can monitor patterns of disease in the hope that they can better predict disease progression and as a result treat earlier. Which if a success will be of huge benefit to many people across the country. Its in its early stages at the moment, but there is a real buzz around this project as it could well be a game changer. Fingers crossed,

Well Russ my Mrs yesterday was just diagnosed with Rheumatoid arthritis can't believe it. The odds of my mum and mrs having it must be crazy high. Will you send some information over regarding Jigsaw will see if it is something she would like to be involved in. She only turned 31 2 weeks ago gutted.

 

[hilts]

@Rascal


Just found out at my sister has psa and I feel bad because I only heard arthritis a few weeks back so didn't give her the support I should have.

It's affecting her knees scalp and now her jaw. Never heard of this thing before. Pretty scared for her. She has been put on some tablets but the jaw thing came after she started plus more stuff on the skin.

I'm a bit concerned that her husband managed to work out what it was before her GP.

 

[Rascal]

Well Russ my Mrs yesterday was just diagnosed with Rheumatoid arthritis can't believe it. The odds of my mum and mrs having it must be crazy high. Will you send some information over regarding Jigsaw will see if it is something she would like to be involved in. She only turned 31 2 weeks ago gutted.

So sorry to hear that mate, it will be hard but there is hope and research is ongoing.

Jigsaw is being launched at the end of April, i will post the relevant information on here on a new thread as we are hoping to attract as many people as possible to sign up.

 

[Scottyboi]

So sorry to hear that mate, it will be hard but there is hope and research is ongoing.

Jigsaw is being launched at the end of April, i will post the relevant information on here on a new thread as we are hoping to attract as many people as possible to sign up.

Top man cheers.

 

[Rascal]

@Rascal


Just found out at my sister has psa and I feel bad because I only heard arthritis a few weeks back so didn't give her the support I should have.

It's affecting her knees scalp and now her jaw. Never heard of this thing before. Pretty scared for her. She has been put on some tablets but the jaw thing came after she started plus more stuff on the skin.

I'm a bit concerned that her husband managed to work out what it was before her GP.

If you want pal, I can talk to her by phone. Send her my number if you wish, i can PM it you.

PsA is notoriously difficult to diagnose, kudos to her hubby for sussing it out before her GP. To be fair to GPs they receive very little training in this area as it is highly specialised.

I totally appreciate why you are scared for her, I remember being diagnosed and feeling it was the end of the world. Fortunately medical advances means PsA is treatable. The problem is because we are all different at the moment it is a case of trying different treatments until you find the one that suits you. I was speaking with a researcher yesterday on this subject and there is research going on into genetics to see if they can work out from our genes which treatment will work best.

PsA is a strange condition, you can have "flares" and then it can settle down and you can return to almost normality, then flare again. Some people work out what triggers these "flares" simply by trial and error. Doing things like cutting out dairy foods, stopping drinking, giving up smoking, not eating tomatoes, the list is endless.

If your sister has any questions I am always happy to help as much as I can, if I cant help i can signpost her to places and people who can.

As for you pal, try and be understanding, be there for her and realise there can be deep psychological impacts attached to PsA.

good luck mate

 

[hilts]

If you want pal, I can talk to her by phone. Send her my number if you wish, i can PM it you.

PsA is notoriously difficult to diagnose, kudos to her hubby for sussing it out before her GP. To be fair to GPs they receive very little training in this area as it is highly specialised.

I totally appreciate why you are scared for her, I remember being diagnosed and feeling it was the end of the world. Fortunately medical advances means PsA is treatable. The problem is because we are all different at the moment it is a case of trying different treatments until you find the one that suits you. I was speaking with a researcher yesterday on this subject and there is research going on into genetics to see if they can work out from our genes which treatment will work best.

PsA is a strange condition, you can have "flares" and then it can settle down and you can return to almost normality, then flare again. Some people work out what triggers these "flares" simply by trial and error. Doing things like cutting out dairy foods, stopping drinking, giving up smoking, not eating tomatoes, the list is endless.

If your sister has any questions I am always happy to help as much as I can, if I cant help i can signpost her to places and people who can.

As for you pal, try and be understanding, be there for her and realise there can be deep psychological impacts attached to PsA.

good luck mate

Cheers pal I will send her a copy of this post and see what she wants to do. I haven't mentioned I was doing it.

You're a star I will let you know how it goes.