Doctor appointment

Hi everyone I was just wondering what everyone view's was on prescriptions. All my life I have suffered with Netherton's Sydrome, I use to take so many prescriptions when I was younger nothing ever worked. I stopped using them a long time ago and just went to lotion 24/7 but now I am getting kinda sick of them after five years, and was hoping there would be a long term solution. I was kind of looking at Trexall. I have already taken Protopic, and I guess after I stopped taken it they found out it didn't help Netherton's Sydrome patients at all, some times it had very severe side effects. Does anyone know of any long term prescriptions? I have always imagined myself being totally clear, it had never happened. If that could happen in my eighth grade year, it would be a dream. But I never allow myself to dwell on that thought as it is a near impossible.

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  • Dear Hermione, not sure what Netherton's Syndrome is but I am wondering if you are under the care of a dermatalogical specialist or just your GP? In my experience of managing eczema I got on far better with a specialist when it got worse. Good luck with finding a solution xx

  • Hermione,

    As lovesradio says, you need to see a dermatologist to be given a proper treatment regime.

    Perhaps you could get some help via The Ichthyosis Support Group (ISG).

    ichthyosis.org.uk/netherton...

    Good luck,

    Shell x

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