Psoritaic Arthitis survey, please help.

[Rascal]

https://oxford.onlinesurveys.ac.uk/psa-psp-survey-1


Over the last few months I have been working on the steering committee as a patient representative of the Psoriatic Arthritis Priority Setting Partnership with a Rheum specialist, a Psoriasis specialist and Psychology Professor alongside the Psoriasis Association, BRITPAC and the James Lind Alliance on a piece of work designed to find out what people, carers, health professionals think should be the areas of research that should be targeted in the next round of research grants.

I have had Psoriatic Arthritis myself for over 40 years and to be honest its a **** of condition, its swells your joints and makes them extremely painful, it makes your skin fall off and it contributes to severe psychological impacts on many fellow sufferers. I have been hospitalised 29 times with this condition over the years and It is an area that has been up to now woefully under researched and this is a big chance for people to make a difference and bring about real change to many peoples lives.

If you have the condition, or have Psoriasis and think it may develop into Psoriatic arthritis or you care for somebody or even know somebody with this condition i implore you to help us with this study, share it if you can or retweet me @rascalmcfc when I tweet it out. You will be helping make peoples lives better.

Many thanks to Ric for allowing the sticky, cheers pal


Thanks in advance to anybody who fills this in, and if anyone needs to know more about the condition, you are always welcome to PM me in strictest confidence.

Cheers

 

[Benarbia’s Backheel]

https://oxford.onlinesurveys.ac.uk/psa-psp-survey-1


Over the last few months I have been working on the steering committee as a patient representative of the Psoriatic Arthritis Priority Setting Partnership with a Rheum specialist, a Psoriasis specialist and Psychology Professor alongside the Psoriasis Association, BRITPAC and the James Lind Alliance on a piece of work designed to find out what people, carers, health professionals think should be the areas of research that should be targeted in the next round of research grants.

I have had Psoriatic Arthritis myself for over 40 years and to be honest its a **** of condition, its swells your joints and makes them extremely painful, it makes your skin fall off and it contributes to severe psychological impacts on many fellow sufferers. I have been hospitalised 29 times with this condition over the years and It is an area that has been up to now woefully under researched and this is a big chance for people to make a difference and bring about real change to many peoples lives.

If you have the condition, or have Psoriasis and think it may develop into Psoriatic arthritis or you care for somebody or even know somebody with this condition i implore you to help us with this study, share it if you can or retweet me @rascalmcfc when I tweet it out. You will be helping make peoples lives better.

Many thanks to Ric for allowing the sticky, cheers pal


Thanks in advance to anybody who fills this in, and if anyone needs to know more about the condition, you are always welcome to PM me in strictest confidence.

Cheers

Good luck! I have psoriasis of the finger and toe nails and it’s ruined my life to the point where I no longer go out to any kind of social occasion as the risk of someone seeing them is too much for me. I’ve even stopped playing guitar live as it draws attention to my fingers. I’ll fill it out and I hope it gets taken seriously!

 

[Rascal]

Good luck! I have psoriasis of the finger and toe nails and it’s ruined my life to the point where I no longer go out to any kind of social occasion as the risk of someone seeing them is too much for me. I’ve even stopped playing guitar live as it draws attention to my fingers. I’ll fill it out and I hope it gets taken seriously!

Hello pal. It will be taken seriously I can promise you that.

I did the Psoriasis Priority setting a few years back and the results of that are now bearing fruit and research into the areas that were chosen is now in full swing.

If you have any questions at all, you can always ask me directly or by P,M as I am quite knowledgeable about treatments, symptoms etc etc.

 

[Petetheblu]

You guys should try a carnivore diet for 3 months.

I've read a lot of positive things about its ability to help with inflammation.

Nothing to lose.

 

[Bellamy's Caddy]

https://oxford.onlinesurveys.ac.uk/psa-psp-survey-1


Over the last few months I have been working on the steering committee as a patient representative of the Psoriatic Arthritis Priority Setting Partnership with a Rheum specialist, a Psoriasis specialist and Psychology Professor alongside the Psoriasis Association, BRITPAC and the James Lind Alliance on a piece of work designed to find out what people, carers, health professionals think should be the areas of research that should be targeted in the next round of research grants.

I have had Psoriatic Arthritis myself for over 40 years and to be honest its a **** of condition, its swells your joints and makes them extremely painful, it makes your skin fall off and it contributes to severe psychological impacts on many fellow sufferers. I have been hospitalised 29 times with this condition over the years and It is an area that has been up to now woefully under researched and this is a big chance for people to make a difference and bring about real change to many peoples lives.

If you have the condition, or have Psoriasis and think it may develop into Psoriatic arthritis or you care for somebody or even know somebody with this condition i implore you to help us with this study, share it if you can or retweet me @rascalmcfc when I tweet it out. You will be helping make peoples lives better.

Many thanks to Ric for allowing the sticky, cheers pal


Thanks in advance to anybody who fills this in, and if anyone needs to know more about the condition, you are always welcome to PM me in strictest confidence.

Cheers

Well done mate, I have Psoriatic Arthritis and hardly one I know has heard of it. I'm in my 30's and it can be a bit of a lonely place at times when I'm struggling with it, as unless you have it yourself its hard to understand the impact it can have.

Sorry to hear how severe yours is, I haven't had problems on that scale but I do fear how it may develop as I get older.

Out of interest does yours run in the family? I was told it can be hereditary but no one else in my immediate family has it! (guess I'm the 'lucky one).I was also told it can be brought on by stress/bereavements and unfortunately I did go through that not long before I started displaying symptoms.

Its an awful condition and anything that raises awareness, or helps people suffering with it is a positive so well done for all your hard work. I hope you get a good response to the survey!

 

[Rascal]

Well done mate, I have Psoriatic Arthritis and hardly one I know has heard of it. I'm in my 30's and it can be a bit of a lonely place at times when I'm struggling with it, as unless you have it yourself its hard to understand the impact it can have.

Sorry to hear how severe yours is, I haven't had problems on that scale but I do fear how it may develop as I get older.

Out of interest does yours run in the family? I was told it can be hereditary but no one else in my immediate family has it! (guess I'm the 'lucky one).I was also told it can be brought on by stress/bereavements and unfortunately I did go through that not long before I started displaying symptoms.

Its an awful condition and anything that raises awareness, or helps people suffering with it is a positive so well done for all your hard work. I hope you get a good response to the survey!

Cheers pal

It can run in families and can be hereditary although it can jump generations and because people tend to cover it up it could well be that even your nan or grandad had it, or an uncle.

Stress is a common trigger, but there are other triggers, most notably a strep throat infection, or other bodily trauma.

One of the problems with the condition is that we are all very different and we all have different triggers, I know people who have had there's triggered by asbestos, another by an anti-malarial jab. It is also common to have skin flares around wounds, its called the Koebner effect. How it works I don't know.

Basically though, its an auto-immune disorder, but again because we are different it can be because you have a low immune system or in my case a hyperdriven immune system. Some people are affected by the sun, most people find the sun works wonders.

There is a big drive at the moment to understand the psychological impacts of the condition as people with it have a much higher suicide rate than the national average. Scary thought that pal.

If you need any advice on meds, treatment pathways etc, ask away and if I can I will help

 

[Rascal]

You guys should try a carnivore diet for 3 months.

I've read a lot of positive things about its ability to help with inflammation.

Nothing to lose.

There is a lot of stuff out there on diet, a girl called Hannah Sillitoe is the go to person on diet at the moment and some of her stuff has been given rave reviews. Its not an area I am familiar with though as I like to eat crap

 

[Bellamy's Caddy]

Cheers pal

It can run in families and can be hereditary although it can jump generations and because people tend to cover it up it could well be that even your nan or grandad had it, or an uncle.

Stress is a common trigger, but there are other triggers, most notably a strep throat infection, or other bodily trauma.

One of the problems with the condition is that we are all very different and we all have different triggers, I know people who have had there's triggered by asbestos, another by an anti-malarial jab. It is also common to have skin flares around wounds, its called the Koebner effect. How it works I don't know.

Basically though, its an auto-immune disorder, but again because we are different it can be because you have a low immune system or in my case a hyperdriven immune system. Some people are affected by the sun, most people find the sun works wonders.

There is a big drive at the moment to understand the psychological impacts of the condition as people with it have a much higher suicide rate than the national average. Scary thought that pal.

If you need any advice on meds, treatment pathways etc, ask away and if I can I will help

That makes sense, as if it does have history in my family I haven't been able to track it.

The different triggers are interesting, in my case I think stress is the most likely cause and it does seem worse at those points. The good weather works really well for me, if I go on a sun holiday by the time I come back I feel fit enough to go running which I can't usually do and unfortunately it wears off shortly after getting back.

The statistics around the suicides is frightening, I struggle with stress and anxiety but I couldnt if PA brough that on or just doesnt help. It just shows the importance of looking after your mental health as well so I'll make sure I keep on top of that.

Thanks for your offer of advice, I really appreciate that. Touch wood I'm managing ok at the moment but if things change I might take you up on that if that's OK. Like I say, great to see something like this being put out there and I'll keep an eye out for the results. Thanks again and all the best of mate.

 

[Rascal]

That makes sense, as if it does have history in my family I haven't been able to track it.

The different triggers are interesting, in my case I think stress is the most likely cause and it does seem worse at those points. The good weather works really well for me, if I go on a sun holiday by the time I come back I feel fit enough to go running which I can't usually do and unfortunately it wears off shortly after getting back.

The statistics around the suicides is frightening, I struggle with stress and anxiety but I couldnt if PA brough that on or just doesnt help. It just shows the importance of looking after your mental health as well so I'll make sure I keep on top of that.

Thanks for your offer of advice, I really appreciate that. Touch wood I'm managing ok at the moment but if things change I might take you up on that if that's OK. Like I say, great to see something like this being put out there and I'll keep an eye out for the results. Thanks again and all the best of mate.

A lot of people keep a diary and some find there is a trigger for their flares, it can be something as simple as eating crisps or changing washing powder. My triggers are particularly the change of seasons, I am nearly always much worse in October and March than I am at other times, I spoke with a sleep specialist who was researching the link and mine are always around the times the clocks change. Now I am aware of that I try and take extra care of myself around those times.

Alcohol and smoking are also significant triggers, yes I drink and smoke, but I don't drink anything like I used too and I am better for it, I still smoke though but I am considering quitting.

It is interesting to me as well that virtually everyone I have ever met plays down their symptoms, its classical British stoicism and of course because its a condition that many have never heard of you are unlikely to elicit sympathy or understanding so its better to say nothing. I know personally people who are much worse than me but cope admirably and I have met people who are nowhere near as bad as me who really cant cope at all.

The good thing is the new treatments that are coming out are superb and are a real life changer for many people, however they are difficult to access to their expense. If you would like to let me know what treatments you have tried I can advise you on where you are on the NICE treatment pathways and let you know how to approach your doctor. Do you see a specialist? If so who and where?

Also thankfully there is a big push now for a more holistic approach to treating the condition and hopefully that means more psychological support will be available. A Prof I have done a lot of work in specialises in this area and without her I honestly doubt I would still be here. She is brilliant and I owe her so much, plus she is lovely.

Thanks for filling out the survey, due to COVID this piece of work has sadly had to take steps backwards but hopefully early in the New Year we can get to work on next steps and maybe finalise the results next spring. That is what the clinical lead is hoping for and of course I defer to her expertise on these matters as I am only a patient ambassador, albeit one with a lot to say and not afraid to say it ;))

 

[Benarbia’s Backheel]

You guys should try a carnivore diet for 3 months.

I've read a lot of positive things about its ability to help with inflammation.

Nothing to lose.

Funnily enough I’ve been thinking about mixing a carnivore diet with long fasting, but not for that reason! I’m going to read some stuff about the inflammation reduction and give it a go.

thank you mate!