Doing research

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Posted Tue 23 May 2017 12.34 by clivech

Hello everyone: I’m doing some research for a company that is hoping to launch a new way to boost the immune system in people who have chronic illnesses, including psoriasis. I’m trying to better understand what the real benefits of having a stronger immune system would be to those who are suffering long-term with this condition. Can anyone give me some insights? I realise there is no single experience of psoriasis – indeed, it clearly has many, many individual manifestations. (I have an autistic son, so know what a spectrum of symptoms can mean.) But what would it mean to you to have a stronger immune system? What would change? How would things be different/better? Many thanks indeed for your help with this. I hope I am not intruding or asking the impossible. Clive

Posted Wed 24 May 2017 08.59 by ClearskinPls
Since 2001, tried uvb and creams

I worry about drugs that interfere with the immune system, however im so fed with psoriasis that im considering existing medication. There could be side affects...but it may be the answer for you...difficult choice but you just have to weigh it up. Hope this helps T

Posted Wed 24 May 2017 10.02 by clivech

Thanks, T, for your reply. This actually would not involve drugs. But if you could get the benefits of a stronger immune system without the side effects, how would that change things for you? What would be better in your life? In short, what is making you so fed up with psoriasis (if that's not a silly question)?

Posted Wed 24 May 2017 10.09 by ClearskinPls
Since 2001, tried uvb and creams

To tell you the truth Clive, I would try anything! Uvb is so shorterm. If I was a millionaire u would live in a hot dry climate every 3 months! There is no miricle cure im afraid... as you know the skin is the body's largest organ and is constantly under attack.... What is this new treatment your going to do? If its confidential I understand. Some say uvb causes psoriasis to come back with a vengeance! Its now appearing on my hands after my last uvb treatments Tony

Posted Wed 24 May 2017 11.32 by clivech

You're right, Tony, it is confidential. But what I'm trying to get a handle on is what form improvements would take if your immune system were to be able to do a better job. What symptoms would be alleviated? How specifically would your life improve? When you spoke to your doctor, how would you say you could tell that your body was doing better? Thanks again for sticking with this. I realise it might seem obvious to you, and that your frustration with the condition is uppermost in your mind. I really appreciate your feedback. Clive

Posted Wed 24 May 2017 11.44 by ClearskinPls
Since 2001, tried uvb and creams

Well obviously if my immune system would stop being so protective over me psoriasis would not be a problem and my anxiety and on and off depressions would clear overnight! Im studying Nutrition and this is a factor to help I think. Relationships are a factor which creates spirals . Im afraid to be blunt...but everyone seems to have a stigma re psoriasis conditions ..This can make anxiety worse. My body feels better approx 3 weeks of good sunshine. So in a nutshell, if I could clear psoriasis up,even temporarily, my outlook would definitely be more positive. Hope this helps Tony

Posted Wed 24 May 2017 16.20 by clivech

Thanks, Tony. Can I ask you to go one step further, and tell me what symptoms would lessen if your condition improved? Certainly your anxiety and depressive periods would be alleviated, but what physical manifestations of psoriasis would also be mitigated? I realise they can be quite varied. How would you "feel" better? Would looking better be part of feeling better? Thanks for all your help. I really appreciate it and it's very useful as I work on this project. Clive

Posted Wed 24 May 2017 16.26 by ClearskinPls
Since 2001, tried uvb and creams

Of course Clive; I would like to share more, however pls elaborate in your particular project for me. I am all for research and help for sufferers; however its important to me that you are a sufferer rather than just a researcher for a 3rd party. I do hope you understand and look forward to your reply. Kind rgds Tony

Posted Wed 24 May 2017 17.00 by clivech

As I said in my first post, Tony, I am doing research. I am not a sufferer. I am a self-employed consultant working with a company developing ways to help people with certain chronic conditions make improvements in their health. I can't be any more specific than that without breaking confidentiality. But trust me, this is thoroughly legitimate work by a highly respected company using some of the best brains in the line of work they do. I have read about psoriasis and the range of symptoms it may display. But beyond "feeling better" that doesn't help me understand how day-to-day life for someone with psoriasis would improve if their immune system were more effective. I hope that answers your question. I'm not looking for anyone to reveal personal details of their experience of the disease, but I am trying to understand better what improvement would feel like and how it would be translated into daily life. Thanks again, Clive

Posted Wed 24 May 2017 17.12 by ClearskinPls
Since 2001, tried uvb and creams

Fair enough That's good enough for me Will post some thoughts to you. Translation into daily life: Improvement of the condition would make such a difference. But your question is slightly flawed; There is no cure,however; Improvement or a cure could definitely change the persona of a sufferer. They would definitely look on life in a different way.

Posted Wed 24 May 2017 17.20 by ClearskinPls
Since 2001, tried uvb and creams

Obviously Clive, the big ask of any sufferer is : a Cure would equal a normal relationship...as I said before : psoriasis is a burden and not understood totally by partners

Posted Wed 24 May 2017 17.39 by clivech

Thanks again, Tony. I can certainly see how the condition would affect your personality and your relationships. It clearly has many dimensions. Is there one symptom which for you would signal an improvement in your condition? If you could choose one thing that would make you feel better overall, what would it be?

Posted Wed 24 May 2017 17.45 by ClearskinPls
Since 2001, tried uvb and creams

A perfect masking cream that could work in conjunction with natural sunlight. What do you think? I have some ideas...

Posted Wed 24 May 2017 17.46 by Toodlesoodles

The disappearance of the visual signs of psoriasis - the red and scaly plaques. The itching too. I guess some suffering with psoriatic arthritis might choose an alleviation of the pain and stiffness they feel instead.

Posted Wed 24 May 2017 17.54 by ClearskinPls
Since 2001, tried uvb and creams

I've met many sufferers.... Once the joints go...it not good...however a patient who feels positive and is encouraged...can definitely benefit from hiding plaques and feel more normal.

Posted Thu 25 May 2017 12.38 by thin-skinned
Irascible septuagenarian fed up with the psoriasis constantly at me :wink:

The treatment of psoriasis involves big business world wide, so with SO much vested interest in treatments (pills, potions, lotions and lamps) very little if any is being spent on research for a cure. If one was discovered then it would never be produced for use by us the public. This point of view is not from me, its direct from my NHS skin specialist I visit from time to time.

Posted Thu 25 May 2017 13.12 by ClearskinPls
Since 2001, tried uvb and creams

It makes me laugh when I see all these lotions and potions that people sell on the Internet....sad ....

Posted Thu 25 May 2017 13.23 by ClearskinPls
Since 2001, tried uvb and creams

Natural sunlight 20mins a day in a hot country maybe a cure. Dead sea is good but so pricey...I know a rich guy that spends thousands every year out there...but alas ...as we all know....a short term solution.

Posted Tue 30 May 2017 19.04 by Psoriasaurus Rex
Sick and tired of scratching the surface - want a cure.

If it's so bad get yourself some sorion cream. It is relatively inexpensive and has been fantastic for myself and many others.

Posted Fri 2 Jun 2017 14.26 by DodgeWC51

I've had six months on Cyclosporin , This was a result of Erythroderma, which is a very rare associated condition. But in all honesty . I'd rather have the Psorasis, The next appointmet with the dermatologist, I want to find out what the results of taking nothing could be., then I'll make my choice. I've lived with it all my life so really don't care about the cosmetics, but the side effects of the drugs, constant tiredness, disturbed sleep, loss of taste , permenant sore throat and muscle cramps. I'd rather die young and happy. The suggestion is to change to Metraxine, but again looking at the possible side effects, do I really want to go through it?
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