newbie

Posted Tue 16 Oct 2018 09.03 by Leebo (edited Tue 16 Oct 2018 09.11 by Leebo)

Hello everyone, I've been reading this forum for a while and found it really usefull, so felt it was time I joined proper and got posting. My experience of psoriasis started in May 17 after I recieved 2 bits of horrible news in one week. I woke up one morning covered (arms, back, legs) and having never heard of the condiition I panicked. I went to my GP who explained that the shock or 'trauma' had caused it to appear. Initially I was given antibiotics which of course did nothing, and I signed myself up for 12 weeks of therapy (counselling) in the hope that it cured it through being relaxed .. it didnt. I purchased every product reccomended to me, coal tar, creams, and of course it just got worse. Next vivsit to GP she referred me to hospital .. after assesment I was given enstillar spray, and cream to soothe after, and I found it worked well (did leave horrible scarring) and the parts of my body I was most embarrased about were looking much better. I started a new job around this time, and as I work in care, had to cover my arms up which was frustrating, but I still felt better about it. then, as many have said on here, when you stop treating it, it comes back bad. I had aggresive patches all over, but now it was all over my face, ears and feet. I went back to the hospital and was given the same prescription, and referred for light therapy. I started the light treatment a few weeks later, starting on 7 seconds the first time, then 5 sessions later it was 1 minute 5 secs. 2 days after my 5th session I woke up red raw and sweating, and in agony all over. I was taken to A&E and kept on hospital for 2 nights with burns. I never felt the light treatment was for me, and despite moisturizing as much as possible between sessions I just felt like Id been sunburnt. The dermatology doctor took me straight off light therapy, and after 2 days of tlc and lots of fluids I went home feeling a lot better. I was sent home with a new prescription, Neoral. soft tablets that, as I understand it, stop the bodys immune system, so slow the production of skin (I could be wrong) these were taken twice a day totalling 350mg a day. I was also given Dermol cream, along with a tablet that prevents side affects of Neoral. I started that 2 weeks ago and I am completely clear of any signs of psoriasis. I have no dry skin, no bruising, even my feet which were covered are back to normal. I had a follow up appointment and the doctor has advised I can stay on this drug indefinetly, and I will have 3 monthly check ups (blood tests). I still use creams reguarly, and avoid the things that could cause relapse (alcohol, crappy food) and having just got an allotment, I get lots of excersise. Looking back since it started, I've hated living with psoriasis, the constant itching, hoovering up plaque, people looking and asking questions etc. I've spent god knows how much on creams and pills that did nothing. I've read so many suggestions from people about fruits, diet, oils you can buy online (I even imported cannabis oil having read about this 'miracle' and it was useless) and prettty much ran out of things to try. My point being, why wasn't this drug mentioned or prescribed to me before? I understand that you have to try other routes first, but reading some peoples stories on here is heartbreaking. I am lucky not to have psoriais anywhere near as bad as some of you. I've read stories of people living with it for 30/40 years or thier whole life and I just feel so bad for them. If this drug has worked so well for me, and essentialy 'switched off' the condition, I can only think it would do the same for others? Im not a doctor so I cant assume that, but I thought by sharing my story it may help if people didnt know about it. For now Im all clear and feeling better each day, and I would love to hear others experience that. Thank you for sharing your stories, tips, encouragement on here. I've found it so helpfull, and Im going to get more involved on the forum now Im registered. Psoriasis is a horrible condition, it takes your confidence away, it drains you, it frustrates you, and at times its hard to get up and face the world. But I always reminded myself that people do live with far worse things, and and there is a lot of support available. Good luck to you all, and sorry for such a long post :)

Posted Tue 16 Oct 2018 10.14 by victoria

Hi Leebo Thank you so much for the message. As you know to try everything to see what helps , I see my g.p. again on the 6th November & see if she will give me a subscription for the tablets and cream, yes stress brought mine on after shingles, in my scalp. Tried everything was trying to many things creams ECT still in same position. Thank you for taking time to share with us all. If I get on ok with the Neoral and cream will keep you posted so kind, hope you stay clear Yours Victoria

Posted Tue 16 Oct 2018 10.24 by Leebo

good luck Victoria, I hope you have good results soon 😊

Posted Tue 16 Oct 2018 10.33 by victoria

Thank you &God bless you

Posted Tue 16 Oct 2018 12.09 by victoria

Thank you Wendy Don't need any more problems all these poisonous drugs they keep fishing out. I am trying not to scratch as vest as possible plus only Johnson's baby shampoo. Hi dear were to next my g.p is reffering me to dermatology so hopefully. Poor Leebo had been burnt with them light so very severe case . Thank you will check above as you recommend I looked on Google it's used for liver heart and transplants in general so strong medication thank you Victoria

Posted Tue 16 Oct 2018 12.50 by Leebo (edited Tue 16 Oct 2018 12.52 by Leebo)

Hi Wendy, thank you for the reply. Yes the doctor was very clear in explaining the side affects of Neoral. It is primarily given to transplant patients to prevent the body rejecting the organ. It comes with not so much a leaflet as a book to read. I have to take a Ranitinde pill each time which is to protect liver and kidneys. I appreciate many people simply dont want to take drugs like this, and are worried about the long term harm. I wish I could have tackled it another way but I have put myself in thier hands in that respect. I will be having regular blood checks and assessment to see if any harm is done. I'm probably guilty of not comittimg enough to a more natural solution but I also appreciated the quick results and self confidence it has given me to do my job. Thank you for your message, I appreciate it Leigh

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