Psoritaic Arthitis survey, please help.

[Rascal]

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

Alright mate. I did Imraldi when it first came out. It is off patent now as it was originally called Adilimubab. It worked fine for me for a couple of years. The problems with these biologic drugs is that your own body fights them and creates resistance to them so over time they will lose their efficacy.

I was one of the very first in the NW to try Infliximab, which was a pain in the arse going for the infusion and I had an anaphylactic reaction to it and I am no longer allowed it or drugs that are similar, I believe Inflixi is now used to treat IBS as well.

It really is dreadful that you had to lie to work just so you could medical treatment, they must be cunts.

As for COVID, Prof Griffthis from SRFT has done a video about biologics and Covid which you can see through the Psoriasis Association website. Which may help anyone with any fears they may have.

To actually get the biologics you have to follow certain treatment pathways mainly due to expense. Biologics are expensive and when they were first introduced they could cost over £1k per treatment, the cost now is much lower due to them coming off patent which means they are more widely available and anyone suffering from this condition has to ask their Health Professionals about them. They make such a difference it is incredible.

You pal I can quite understand why you were difficult to diagnose, having only 1 lesion could lead it to be dismissed and with PsA being a rarer type of arthritic issue it can be easily misdiagnosed. There are certain factors that do indicate PsA though such as pitting in finger and toe nails and sore heels, you can also get associated problems such as anklonsyning Spondilities and Bursitis as well, plus a myriad of other weird and wacky issues. There is even ongoing studies into its effect on the heart, vision, and people do report issues with teeth and Gums, anyone who knows me will notice that, I am a right gummy fucker.

I am well pleased though pal its working for you and keep your chin up because the next generation of biologics will be even better according to my Prof and the work that is being done by an organisation called BADBIR is providing amazing data on all the biologics. Plus there is a new inititive called the Global Psoriasis Atlas which is being run out of Manchester Uni which is mapping the prevalence of the condition worldwide in order to see what genes have an affect. The project manager has promised me an update on its work when the covid stuff is over as long as I buy her some glasses of wine :))

 

[Ancient Citizen]

I must confess, I never knew arthritis was attached to this dreadful condition,
thankfully it didn't come with mine, it must be absolutely fucking awful
to have this combination to cope with.

 

[Blue Til Death]

Alright mate. I did Imraldi when it first came out. It is off patent now as it was originally called Adilimubab. It worked fine for me for a couple of years. The problems with these biologic drugs is that your own body fights them and creates resistance to them so over time they will lose their efficacy.

I was one of the very first in the NW to try Infliximab, which was a pain in the arse going for the infusion and I had an anaphylactic reaction to it and I am no longer allowed it or drugs that are similar, I believe Inflixi is now used to treat IBS as well.

It really is dreadful that you had to lie to work just so you could medical treatment, they must be cunts.

As for COVID, Prof Griffthis from SRFT has done a video about biologics and Covid which you can see through the Psoriasis Association website. Which may help anyone with any fears they may have.

To actually get the biologics you have to follow certain treatment pathways mainly due to expense. Biologics are expensive and when they were first introduced they could cost over £1k per treatment, the cost now is much lower due to them coming off patent which means they are more widely available and anyone suffering from this condition has to ask their Health Professionals about them. They make such a difference it is incredible.

You pal I can quite understand why you were difficult to diagnose, having only 1 lesion could lead it to be dismissed and with PsA being a rarer type of arthritic issue it can be easily misdiagnosed. There are certain factors that do indicate PsA though such as pitting in finger and toe nails and sore heels, you can also get associated problems such as anklonsyning Spondilities and Bursitis as well, plus a myriad of other weird and wacky issues. There is even ongoing studies into its effect on the heart, vision, and people do report issues with teeth and Gums, anyone who knows me will notice that, I am a right gummy fucker.

I am well pleased though pal its working for you and keep your chin up because the next generation of biologics will be even better according to my Prof and the work that is being done by an organisation called BADBIR is providing amazing data on all the biologics. Plus there is a new inititive called the Global Psoriasis Atlas which is being run out of Manchester Uni which is mapping the prevalence of the condition worldwide in order to see what genes have an affect. The project manager has promised me an update on its work when the covid stuff is over as long as I buy her some glasses of wine :))

Hi Rascal,

Thanks so much for taking the time to write all this useful info, I wish I had known you many years ago.. Strange you mention sore heels as being an indicator, i had that big time and could hardly walk, they put that down to the fact that I had been running half marathons too much and the condition would subside over time, obviously it didnt ..

I am kind of resigned to the fact that the Imraldi will only work for a limited period but so far so good and as you say, no pissing about with hospitals and sneaking about for appointments.. The flare ups are worrying but I am getting used to them now, my consultant took me off all medication at one point to see if I could do without but the symptoms came back with a vengeance after only a few months.

Keep that wine flowing for the info ;-)

 

[Rascal]

I must confess, I never knew arthritis was attached to this dreadful condition,
thankfully it didn't come with mine, it must be absolutely fucking awful
to have this combination to cope with.

It is fairly rare AC , about 5% of people with Psoriasis will develop Psoriatic Arthritis and of those 5% many may not even notice beyond a few aches and pains we attribute to normal wear and tear of living. A small number will develop severe symptons and they are horrible. It can disfigure fingers, a friend of mine had to have all her tendons in her hands cut to straighten her fingers as they were all over the show. People also think of arthritis has just coming in one form, whilst it aint an area I know a lot about there is Rheumatoid and Osteo as well as Psoriatic and they can be confused as they difficult to diagnose. It is also possible to have a mix of the arthritics, then you are properly fucked.

 

[Rascal]

Hi Rascal,

Thanks so much for taking the time to write all this useful info, I wish I had known you many years ago.. Strange you mention sore heels as being an indicator, i had that big time and could hardly walk, they put that down to the fact that I had been running half marathons too much and the condition would subside over time, obviously it didnt ..

I am kind of resigned to the fact that the Imraldi will only work for a limited period but so far so good and as you say, no pissing about with hospitals and sneaking about for appointments.. The flare ups are worrying but I am getting used to them now, my consultant took me off all medication at one point to see if I could do without but the symptoms came back with a vengeance after only a few months.

Keep that wine flowing for the info ;-)

You are welcome mate, pleased to help.

If you have any questions in the future don't hesitate to ask, if I don't know the answer I definitely know people who will know.

Generally if you come off any drug it can be like coming off heroin, your body is used to it being there and it goes cold turkey. I was on the trial for the very first Biologic drug in the UK, it did nothing for me and after 16 weeks I cam off it, I was in hospital within a week worse than I had ever been. I was literally stuck solid, all my joints seized up and my skin exploded. I was that bad if I needed a piss a nurse had to hold a bottle for me to piss into as I couldn't move. Which is a bit scary. That drug never made the NHS due to fact it started killing people in the USA, but it was a start and the new drugs that were developed from that original have become better and better. A Doctor I know called Zenas Yu has been doing research into the safety of them and the results are excellent, they are very safe to use nowadays, Zenas is lovely, my Profs protégé and in time will be one of the best in the world, the lad is a fucking genius and he is a good lad, only about 25 atm too.


Its why the survey I put up is so important, it will decide where people like Zenas focus their research next. The NHS is becoming more patient focused and it reacts to patients needs far better now than at at anytime in its history because patients happen to know what is really needed to be researched as they suffer the symptons.

Greater Manchester is brilliant at this, we have Innovation Health Manchester, which most people will not have heard of sadly and the work that is coming up across lots of sectors is fabulous. It has the full backing of Andy Burnham, love him or loath him, he is fantastic on this stuff. I am involved with Innovation Health Manchester, we are currently developing a strategy to cope with the expected rise in Mental Health issues caused by Covid crisis and we have work into digital technology such as Zoom meetings with doctors instead of face to face appointents, stuff on dementia upcoming. Manchester aims to be the worlds first dementia friendly City, which I think is amazing.

 

[*simmo*]

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

Hi Mate. Will definitely fill out the survey. I have suffered with Psoriasis and Psoriatic Arthritis for 30 years. Tried all sorts of steroids and creams and even immune suppressants for my skin but nothing worked long term. The only thing that did work was PUVA which left me clear for about 12 months before it came back. I have had 2 bad flare ups with my Arthritis where nearly every joint was affected. Was given methotrexate to take once a week by the hospital which worked but made me ill for 24 hours after taking. I stopped taking that after a phone call regarding life insurance and being told that it was a life shortening drug.
Fortunately my joints are fine at the moment with just mild symptoms in a couple of my fingers, but my skin is still as bad as ever. Any advice would be great, and thanks for the post.

 

[Rascal]

Hi Mate. Will definitely fill out the survey. I have suffered with Psoriasis and Psoriatic Arthritis for 30 years. Tried all sorts of steroids and creams and even immune suppressants for my skin but nothing worked long term. The only thing that did work was PUVA which left me clear for about 12 months before it came back. I have had 2 bad flare ups with my Arthritis where nearly every joint was affected. Was given methotrexate to take once a week by the hospital which worked but made me ill for 24 hours after taking. I stopped taking that after a phone call regarding life insurance and being told that it was a life shortening drug.
Fortunately my joints are fine at the moment with just mild symptoms in a couple of my fingers, but my skin is still as bad as ever. Any advice would be great, and thanks for the post.

Thanks pal, I got an update from our IT specialist yesterday and the survey is going better than expected in terms of replies although we are missing some demographics. No doubt this will be discussed at the next meeting.

I must say, I have never heard that methotrexate shortens life expectancy, I think your life insurance company are taking the piss and don't want to insure you because you have a condition. Are you UK based?

If you can confirm that I will get back to you on what to do.. The reason I ask is your life insurance.

 

[*simmo*]

Thanks pal, I got an update from our IT specialist yesterday and the survey is going better than expected in terms of replies although we are missing some demographics. No doubt this will be discussed at the next meeting.

I must say, I have never heard that methotrexate shortens life expectancy, I think your life insurance company are taking the piss and don't want to insure you because you have a condition. Are you UK based?

If you can confirm that I will get back to you on what to do.. The reason I ask is your life insurance.

Yes mate. UK based. It wasn’t that they wouldn’t insure me. They said it made my premium more expensive because I was taking it. I got it sorted in the end though.
The other interesting thing is that 2 weeks before both bad flare ups I’d had a flu jab. Doctor at Trafford said it was unrelated but seems linked to me.

 

[The Fat el Hombre]

I was diagnosed by a dermatologist with chronic plaque psoriasis about 5 years ago now. Had it all over me. Had 50% coverage on my torso, thick, itchy, scabs. iI absolutely destroyed me. Whilst I was waiting for treatment (4 months to see a dermatologist!) my mum (very worried at the time, and rightly so) bought me this book: . I thought it would be bullshit and I needed strong medication, but as my options were to either rob a chemist for them (something I was genuinely weighing up) or give this book/diet a go I did the latter. By the time I got to the dermatologist my psoriasis had probably gone about 80% towards clearing - there were no new, bad, dark scabs but some of them still hadn't fully cleared yet. Yey put me on uvb light treatment and they left dark marks on my skin for a while but it didn't need much as it had already all but gone. I wish I hadn't had the light treatment in hindsight as clearing it myself didn't leave any marks, but they cleared eventually.

The book can be a bit OTT (colonic irrigation, only eating apples for the first 3 days etc) but it's the thinking behind it people need to understand. basically it's usually a problem with the gut which manifests in your skin. This is why there is supposedly no cure for it - the treatment doesn't get to the root of the problem, which is that you're putting things into your body that it doesn't like and it's reacting with psoriasis. As the book is a bit extreme, here is my advice:

No night shades. This is the most important thing. read the reviews on the pagano book most say the same. Cut out your potatoes, peppers etc. I'm pretty sure it was tomato sauce that had been killing me for so long, and would explain why I had skin trouble in my teens. Very rarely eat it these days. I substituted potatoes for sweet potatoes - sweet potatoes aren't a nightshade they are a morning glory. I find they work wonders. I eat them almost every day

Avoid processed, shit foods. I had a good diet before my P started so for me it was more a case of cutting out nightshades (potatoes peppers etc are considered healthy but they trigger it) as opposed to burgers, chips etc

Eat plenty of fruit - these clean out your system. Apples particularly good

Exercise.

Eat leafy greens - I eat spinach most days, and have found it worked wonders.

Don't smoke - I managed to clear it the first time despite smoking a bit, the second time it triggered (after a throat infection) I couldn't get away with smoking so had to cut it out for a bit. Since clearing (took a couple of months the second time) Ive been smoking daily through lockdown and haven't had any issues. The book says drinking is also bad but I've always been ok with that mostly. At least with pints - I remember having a reaction after doing shots on a stag do in Krakow but I think my body can handle pints for the most part.

It's a holistic approach basically - right diet plus exercise, positive mindset etc. You do that day after day and it will go, and honestly it's an incredibly empowering feeling when you start to see it fade, after it completely dictating your life and mindset and being told that there is no cure for it. I have a mini outbreak now and then but I usually know why - it's when I let my diet slip or smoke too much or get stressed about things. When it happens I tighten things up and it goes. I control it. Sometimes when I'm teetering on it breaking out I can smoke a few cigs and literally see a small plaque come up soon afterwards. They soon go as I will cut the shit out after that.

It's a terrible disease. You get little sympathy ("urgggh what's that on your arm/leg/face?") but it can be beaten. Don't believe the docs. My mum and dad are mates with a dr who they told about my diet etc curing it and the doctor didn't believe them. Well fuck the docs. Trust me it works, you've just gotta make the sacrifice/be disciplined about it but honestly it's fucking ace when you see it start to clear. Literally a life saver. Psoriasis forums are very dark places.

When I see someone with psoriasis I often want to mention the book or help them, but I don't want to bring it up as it might hurt them that someone has noticed their psoriasis. If they bring it up first I'll say my bit to help

If anyone needs any help/advice don't be afraid to DM me

 

[Rascal]

Yes mate. UK based. It wasn’t that they wouldn’t insure me. They said it made my premium more expensive because I was taking it. I got it sorted in the end though.
The other interesting thing is that 2 weeks before both bad flare ups I’d had a flu jab. Doctor at Trafford said it was unrelated but seems linked to me.

I am glad you got it sorted, Its unfair a premium rises because of Psoriasis, especially when their is to my knowledge no life shortening effects of taking methotrexate. I can only assume they looked up what Methotrexate was developed for and went with that. It was originally developed for people having transplant surgery, the drug helped the body lower the immune system which made it less likely to reject the transplanted organ. They noticed that a side effect of taking it was peoples psoriasis cleared up, I think it as fluke and a real discovery

I do not have the flu jab, I have never had it, my Prof recommends it but understands why I don't want it. Sore throats are linked with psoriasis as are other strep infections. Did you have a sore throat before/after having the flu jab?