Psoriasis Shout Out

[Rascal]

Suffered since childhood. Tried every trick in the book. Now on humira injections twice a month. Seeing a neurologist this saturday to see if he can help with my tremours. After a traumatic childhood things went from bad to worse. This desease eats you from the inside out. Im under doctor Fitzgerald at Hope and he does a good job of clearing the symptoms, but the emotional side runs far far deeper. Well done you guys keep up the good work.

Thanks mate, there are more tricks in the book for you and Dr Fitzgerald will be aware of them im sure. Humira is a decent drug, worked very well for me. Trauma is often a trigger for psoriasis and I know there is ongoing research into the psychological effects of the condition. There is also a new intiative at Salford Royal called the PSOWELL CLINIC which involves seeing a health psychologist and I would recommend it mate. It aims to treat the whole person rather than just the skin. Ask Dr Fitzgerald for a referral to it, it really could help pal.

 

[Rascal]

I remember having some joy with a regime called barneys formula. It can or could be found on google. It was and still is I think a big hit on psoriasis forums. It involves a cocktail of supplements and I completley cleared using it over a few months. My psoriasis returned shortly after with a vengance so unfortunately back to Hope and the treatment room.

Keep smiling mate, there are many factors involved and if you need to go back I can tell you the range of treatments available has never been better.


Im always available if people would prefer to PM me, I will get back to you eventually I promise. Im a patient ambassador for the Psoraisis shout out and today you can find us in St Annes square in town, we have loads of info sheets and freebies to give out so come along if you wish and speak to us. We should have medical professionals with us and anyway im there if you want to chat City as well.

 

[EL APACHE TEVEZ]

Had it in my scalp for years, on my elbows bits and bobs over my back ,but worst of all on my groin,some very very ignorant uneducated people out there make stupid remarks about this ailment.

 

[Blue Til Death]

I have the same condition as yourself. I believe the drug you are taking is called Infliximab, which I took many years ago when it first came out. There is a new drug called Cimzia that works superbly for PA and I am currently the best I have been for years. Its around 2-5% of psoriasis suffers who develop PA and it is a twat of a thing. I have been really bad at times through it, unable to open a packet of crisps or even brew up.

Treatments are improving pal, so keep smiling there is hope. There is a clinic at Salford Royal that is specifically for PA and you see two Doctors at once, a Dermatologist and a Rheumatologist. If you have not already been seen in this clinic it may be worth asking for an appointment. Its run by Prof Warren and Dr Chinoy who are brilliant and like Laurel and Hardy at times

Thanks Rascal, that's really useful Information as I have a review scheduled for the middle of November, I have been having the Imfliximab 12 weekly IV for 16 years now, its a woman but without it I can hardly move without locking up, I live down south now but I may well go to this clinic if I can.. The drug Cimzia, is that a tablet or is it another IV Infusion? I would love to have a tablet instead of traipsing the the hospital every 3 months..

 

[blueunit]

It's really reassuring to hear that this ailment has not been pushed aside and that some great people are doing some fantastic work.

I've had a really bad flare up myself, going on for three months now. I have it on my scalp, groin and it looks like it has started on my right shin. I've not had my hair cut since the flare-up and I'm starting to resemble something like Cousin IT.

My scalp has always taken the worst of it, I'm balding too which does fear me a little as my hair at the moment hides it.

 

[Brightblue]

I've said this before, changed my diet cut out dairy and meat this helped tremendously. Previously also used homemade coconut-oil/weed tincture. Now use Rick Simpson Oil instead, Absolute miracle stuff.

 

[Deepest Blue]

Great to meet you this afternoon @Rascal.
Hope the Shout Out is successful in raising awareness of this horrible condition and funding is made available to fight it effectively.

 

[bumbleblue]

Good luck with your endeavours, and all of you living with this condition.

 

[csit17]

Suffered since I was 7 years old, it started out all over and I was referred to Prof Griffiths, he started me off on UVB light treatment and it cleared it up until I was about 12/13, he then started me on topical creams which worked for about 6 months before I had to switch to a different cream. This went on until I was in my early 20's and Prof then recommended doing a trial which was an injection every 4 weeks for 18 months and I was 1 of the first people in the UK to trial it. It worked brilliantly with full clearance after 6 weeks, however after Phase 3 trial they decided not to licence itwhich was a blow but life goes on. I was then given Methotrexate which didn't work. I'm now 36 and am now on Stellara which is an injection every 12 weeks and I've got 95% clearance, I've been on it for about 18 months and it's the best thing I've had since the trial drug. I very occasionally use Emuovate to keep my face under control but I'd say it's only once a month.

I'd advise anyone who hasn't seen Prof Griffiths to try and see him, he is world renowned in the field of Psoriasis and I am very lucky to have been under him since the beginning.

 

[Rascal]

For the first time last night I heard City (CFG) being mentioned as part of a presentation given to explain the reasoning behind the "Health Innovation Manchester" initiative.

I was invited to the launch of the "Rapid access Psoraisis clinic" at Citylabs 1 in town. Its a new ground breaking form of clinical access to services developed by my Prof and his team. The first presentation was given by a Professor Bradshaw who heads Health Innovation Manchester which put the new clinic into a Greater Manchester context. Credit where it is due but it is down to the devolution of Health funding driven under George Osborne (****) which has allowed CFG to become partners in providing health provision funding. Im ideologically against for profit healthcare but this involvement is not for profit it is about provision of holistic health care for all in Greater Manchester. Its headed by Andy Burnham who is using the devolution settlement to push for greater health provision across Manchester. The aims of the clinic are to treat early and attempt to avoid peoples decline into chronic conditions. if it works it will save money and also improve peoples lives. Im usually amongst the first to have a go at the Tories for anything but this is something I really approve of and the new Health minister Hancock is very interested in the pilot as it could be rolled out nationwide across other areas of health care. Im certain Donachie will be interested as the pilot is also including early access to Psychological support which is vital in treating chronic debilitating conditions and it aims to reduce obesity, alcohol intake, drug dependency and aims to increase educational awareness. I was so proud that our club are involved in the initiative and it really speaks volumes for what the Sheikh and his people aim to do for the people of Manchester. So much for the getting bored and new toy etc we hear.


I will be fascinated to see how the new clinic works and speaking with the other patient amabassadors afterwards we all agreed this is an amazing idea that could have made our lives so much better if it had been around when we first diagnosed, but will make peoples lives in the future much better.

So well done the Tories and well done City.


The shout out moves on to Bury today and i may attend later for an hour or so but to be honest im knackered and i have really put my heart and soul into this week. I have met some wonderful people and given plenty of advice and tips to people who i hope will benefit from my experiences. Nice to meet Deepest Blue yesterday and I hope my advice helped you mate. Im always available by PM if needed.


Thanks to all who have retweeted stuff and supported me its really appreciated.