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!

 

[Benarbia’s Backheel]

Stress and general health are big factors for me. We had our first baby two days before lockdown started, and I caught Covid-19 in the hospital and was very ill for the first three weeks of his life. By the end of the lockdown my nails were terrible, whereas before that I had been going to the gym 5 times per week for three months and I was seeing big improvements.

I also get it on my scalp, and have random patches my stomach, foot and arm.

Any tips on treatments would be massively appreciated @Rascal . as with psoriatic arthritis, nail psoriasis is very under researched.

 

[BlueMoonRisin’]

I was delivering Chinese takeaway food until recently and was eating far too many freebies. I developed blotchy skin and thought it was probably psoriasis. I bought a tub of Ingram's herbal camphor cream as a friend recommended it and I read excellent customer reviews on it. I thought it was working well and my skin erupted again. Couldn't get a Doctors appointment due to covid and skin was getting worse.

I thought it may be because of MSG used so I googled it. And MSG is linked to skin psoriasis. I cut out the takeaways and started eating plenty of fruit veg and drinking lots of water.

Skin soon healed and back to normal now so if anyone stuffers skin psoriasis, it may be worth cutting out MSG as much as you can.

 

[Uwe Rosler]

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

Amazing work mate, I have plaque psoriasis on my arms and a couple of patches on my knee and my back. I've been managing it with Dovobet which does seem to help a lot, although I've read the dangers and pitfalls on reliance to steroid creams. Same as you, my diet is probably a big factor but i'm not giving up the fags or booze any time soon. Stress was a trigger for me, it really flared up after my divorce three years ago. Happy to support in any way I can.

 

[Petetheblu]

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!

Carnivore is growing quite rapidly, I'm more low carb myself.

Have a look at MeatRX, there's loads of tributes and all categorized. Infomation wise its second to none.

 

[Rascal]

Amazing work mate, I have plaque psoriasis on my arms and a couple of patches on my knee and my back. I've been managing it with Dovobet which does seem to help a lot, although I've read the dangers and pitfalls on reliance to steroid creams. Same as you, my diet is probably a big factor but i'm not giving up the fags or booze any time soon. Stress was a trigger for me, it really flared up after my divorce three years ago. Happy to support in any way I can.

Dovobet is a very strong steroid and people coming off it can have a bounce back effect and their P can actually get worse. It also thins the skin if you use it for a considerable length of time. Try diluting it with moisturiser, preferably white soft paraffin, a lot of moisturisers are actually rubbish and a rule of thumb is if they are cold to touch, do not use, they will contain alcohol in some form or another. And you know how your mouth feels after a day on the ale. Another general rule is less is more, there is no need to plaster steroid creams on as you lose the effect as they just lie on the skin rather than soak in.

Thanks your support pal, its really appreciated and if I can help in any way give me a shout on here or by PM if you wish
Cheers

 

[Rascal]

Stress and general health are big factors for me. We had our first baby two days before lockdown started, and I caught Covid-19 in the hospital and was very ill for the first three weeks of his life. By the end of the lockdown my nails were terrible, whereas before that I had been going to the gym 5 times per week for three months and I was seeing big improvements.

I also get it on my scalp, and have random patches my stomach, foot and arm.

Any tips on treatments would be massively appreciated @Rascal . as with psoriatic arthritis, nail psoriasis is very under researched.

Nail psoriasis is an indicator of Psoriatic Arthritis, its generally pitting in your nails, looks like little pin pricks but can develop and the skin actually grows over the nail and thickens which n=makes the nails crumbly and they can and do fall off. Nail psoriasis usually improves as a persons psoriasis improves. I do agree though it is an area that needs more research.

Scalp treatments depend. The best thing in my experience is to shave all your hair off and use a cream called cocois it is coconut based and has a small amount of tar in it. Apply before bed and wash it off in the morning. If you don't want to shave your hair off you can still use the cocois but in my experience its less effective and takes longer to clear. After you are clear try and keep your hair short and use a shampoo called T-Gel or Alphosyl. They are expensive but they are worth it and will hopefully keep it under control.

Random patches elsewhere can be treated with steroid creams as first option, if they don't work then other options become available such as tablets, after that injections called biologics come into play. Obviously due to NICE guidelines your doctor has to use the cheapest options first as biologics are expensive, although now they are off patent they are becoming cheaper.

I would also ask your GP to refer you to a specialist dermatologist as you will need a specialist to prescribe the more effective drugs and to be honest GPs do not know much about dermatology unless they have specialised In it and even then there knowledge will be limited.

If you have any more questions please ask away, if I can answer I will, but bare in mind I am only a patient and can only relate from my own experiences.

 

[Rascal]

I was delivering Chinese takeaway food until recently and was eating far too many freebies. I developed blotchy skin and thought it was probably psoriasis. I bought a tub of Ingram's herbal camphor cream as a friend recommended it and I read excellent customer reviews on it. I thought it was working well and my skin erupted again. Couldn't get a Doctors appointment due to covid and skin was getting worse.

I thought it may be because of MSG used so I googled it. And MSG is linked to skin psoriasis. I cut out the takeaways and started eating plenty of fruit veg and drinking lots of water.

Skin soon healed and back to normal now so if anyone stuffers skin psoriasis, it may be worth cutting out MSG as much as you can.

Hello mate, I hear lots of stuff on diets, creams etc and I am always wary as a lot of the stuff is not medically proven and of course there are scammers out there who will take advantage of people who are desperate. As far as I am aware there is no provable link between any food stuff and Psoriasis/ Psoriatic Arthritis because for the simple reason they are auto immune conditions. I am not dismissing them because people find stuff that works for them but I wish I had a quid for every miracle cure I have been told about, I would be a very rich man.
Of course cutting bad stuff from your diet should help with your overall health and a persons sympton's maybe alleviated because of that, The stuff that is proven to bad is smoking and alcohol. I do both :))

Drinking lots of water always helps as it keeps you hydrated so I would recommend that to everybody, not just people with the conditions.

Thanks for your input though mate, it is appreciated

 

[Ancient Citizen]

I developed psoriasis about 7 years back, legs, and elbows, and it's no fucking joke.
For ages I was using creams and Dovobet/Dovonex. It got better, then would flare up again,
but saw a new Doc, after years of this shit, and he prescribed ENSTILAR, I'm sure
@Rascal knows of it, but, for me, it was a miracle cure. The flaking and itching eased,
then stopped altogether, and now all I get is a few red spots occasionally, which I
just use standard creams on, but now and then I'll give them a tiny blast of this
gear...

Now I'm not saying it works for everyone, but thankfully, it has for me.

 

[Rascal]

I know that well AC and I agree it is superb stuff. I use it myself at times because it is ideal to use when you wear your good clothes as it doesn't stain and if you wear jeans it doesn't look like you have pissed yourself, like it can with some stuff I have used over the years.

It has calcitripol as a base which is a vitamin D derivative, dovonox and dovobet are similar based. Vitamin D is important obviously, and its why UVB sunbeds are used in treating Psoriasis as the sun clears a lot of peoples patches. There is a small number who this doesn't work for though, so its not for everyone.

Dovobet and Dovonex are far too strong for a person with extensive psoriasis and really should only be used on small patches, which they are they are very effective at doing. Long term use of them should be avoided and sensitive areas are not suitable. So say you have cock or fanny psoriasis these creams are a massive no no… Funny though that Vit D is used I think for erectile dysfunction. I wouldn't recommend anyone with it rubbing dovonox on it hoping for a hard on.

Enstillar is good stuff but I would advise it be used be sparingly as your skin can become "addicted" to these things and the bounce back effect of stopping them can result in you being much much worse.

Pleased to hear its doing the business for you AC.

 

[Blue Til Death]

Hi All

Ive suffered with this condition for nearly 30 years now, took the docs an age to diagnose it, which made things worse.. I was eventually put on a drug called Imfliximab which I was given at the hospital every 12 weeks by IV infusion. After a chat with my consultant, he put me on a drug called Imraldi which is self delivered using an epipen injection in my leg. This is so far doing a great job and means i dont have to lie at work and sneak off to the hospital every 12 weeks, also with the covid thing, I am not sure how I would have coped if i could not go to the hospital to get the stuff..

Is anyone else on Imraldi? if not, I think its worth a go if your consultant agrees, its fairly painless and takes 5 seconds rather than half a day.. I get flare ups every now and then when i think the medication isnt working but they seem to calm down after a few weeks and I only get them every now and then..

The weird thing is, I only ever had one lesion on my leg which disappeared years ago, i am very lucky in that respect for sure..

Good luck to you all with your treatments