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I am 39 years old and have suffered from very severe pso...

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Guest
Guest

I am 39 years old and have suffered from very severe psoriasis since i was 14.I have tried everything.A year ago i was diagnosed as having psoriatic arthropathy especially in my feet,one foot has structural damage (erosion)which causes me much pain,I have had to finish work,and am now registered disabled.The most heartbreaking thing is that my 8 year old son is now starting with severe psoriasis and i know there will be almost nothing that can be done. I know it sounds depressing ,well it is, but it's all true and we have to get on with life as best we can,but it just goes to show how something that some people wouldn't give a second thought about affects peoples lives so dramatically.I wish there was more help out there.

[i:56642ff608]This message was automatically imported from the original Patient Experience[/i:56642ff608]

0 likes, 6 replies

6 Replies

  • Guest
    Guest

    Posted

    Have you tried any complimentary and alternative medicine, for exapmle, acupuncture-chinese medicine?

    [i:d5dffbecf7]This message was automatically imported from the original Patient Experience[/i:d5dffbecf7]

  • Guest
    Guest

    Posted

    I am 33yrs old and have suffered from mild-moderate psoriasis for 11 years. Dovonex (Calcipitriol) and UVB from a commercial tanning studio has made it very manageable, even my ex didn't know I had it! Tanning is dangerous, and recently I had a BCC mole removed (bit dodgy) but when I weigh up potential risk vs quality of life, I have decided to continue sunbeds with caution and regular checking of my skin.

    I read somewhere that there was a genetic cure being researched, somewhere in USA? Anyone any idea what that's about?

    It's hard to keep it under control, but give time to application of cream etc., and try to find a way to live with it. Avoid stress at all times, and strive to be happy- it'll improve your skin I promise. There could be a lot worse wrong with you, but I do know how horrible it is.

    [i:87962636b5]This message was automatically imported from the original Patient Experience[/i:87962636b5]

  • Guest
    Guest

    Posted

    I really feel for you, my worst fear at the moment is that my son is going to inherit my psoriasis, and knowing how much pain it has caused me makes me want to protect him from it, but if you get it you get it eh? I agree with you that there should be more help, and you never know by the time our children are grown up there might be a proper cure for psoriasis that actually works. x x x

    [i:771c31be71]This message was automatically imported from the original Patient Experience[/i:771c31be71]

  • Happiness_after_Psoriasis
    Happiness_after_Psoriasis

    Posted

    I am 38 years old man. After 4 days cyclopamine treatment ,( a clinical trial ) , [u:7796e86ebc]my terrible psoriatic leisons on my two hands are absolutely cured.[/u:7796e86ebc] This was unbelievable..I am now very very happy and after 2 years lesions didn't occur again.

    I waited a long time because I wanted to check the result directly on my hand.

    You may see the information about the treatment in the following paper.

    Tas, Sinan et al. (2004) Rapid clearance of psoriatic skin lesions induced by topical cyclopamine. A preliminary proof of concept study , Dermatology 209:126-31.

  • Guest
    Guest

    Posted

    After a small search about this treatment, I learned several good news.

    [u:318c60d2b6]I am volunteer for using such a treatment[/u:318c60d2b6], please send me an information about when and where I can get it? Several times I went to Ankara, if it is possible I can go again.

    Here is the abstract of the paper that I found:

    Abstract

    Background: We have earlier found a highly efficient induction of the differentiation of epidermal lineage skin tumors by cyclopamine, a steroidal alkaloid inhibitor of the hedgehog/smoothened signaling, under conditions in which cyclopamine exerted no adverse effect on skin. Objective: We aimed to develop a mechanism-based treatment for psoriasis with cyclopamine. Methods: We subjected psoriatic skin lesions to cyclopamine under conditions similar to those we used for skin tumors and evaluated the responses of lesions clinically and by histopathological/immunohistochemical analyses. Results: All treated lesions in different patients having plaque and guttate forms of psoriasis regressed rapidly. Differentiation of the epidermal cells of lesional skin and disappearances of infiltrating inflammatory cells were evident within a day. Lesions were cleared commonly on days 3-4. Former treatment sites followed up for more than 24 months now show a lack of adverse effects in the long term. Conclusion: An effective treatment for psoriasis is described, consistent with intervention in a proximal/key pathogenic event.

    Copyright © 2004 S. Karger AG, Basel

  • Guest
    Guest

    Posted

    I can add some other references , which are giving a very good review about Cyclopamine and this treatment.

    [quote:f06486b1e2]Cyclopamine: Inhibiting hedgehog in the treatment of psoriasis

    Author(s): Meth MJ, Weinberg JM

    Source: CUTIS Volume: 78 Issue: 3 Pages: 185-188 Published: 2006 [/quote:f06486b1e2]

    [quote:f06486b1e2]Useful plants of dermatology. VIII. The false hellebore (Veratrum californicum)

    Author(s): McFerren MA

    Source: JOURNAL OF THE AMERICAN ACADEMY OF DERMATOLOGY Volume: 54 Issue: 4 Pages: 718-720 Published: 2006 [/quote:f06486b1e2]

    [quote:f06486b1e2]USE OF CYCLOPAMINE IN THE TREATMENT OF PSORIASIS AND OTHER SKIN DISORDERS ,European Patent EP1496895[/quote:f06486b1e2]

    Dear, Happiness after psoriasis

    please send me your e-mail address if it is possible. I am searching a clinical trial on this treatment.[/quote]

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