At a loss now

To cut a long story short! This year I have suffered and still suffering with ulcerated chilblains on my feet like big creators and lots of sores, everywhere even the soles, toes, sides of ankles.I agreed to try rhutuximab back in May and have attended every appointment in Manchester and complied with every request despite this my consultant/ hospital has let me down, loosing my notes/ not communicating/ delaying treatment/ telling me one thing then cancelling on me/ saying I'm on meds I'm not the list goes on. They said I wouldn't need any pain relief or walking aids as this new drug would help me that was 8 months ago now I don't have an app till end march next yr. my consultant doesn't know what to try, all I wish is to c sum1 just to get on another tablet as I'm self diagnosing and treating myself at the moment on a steroid boost 30mg a day and overdosing on morphine and co coda mol but my options are fading like me, I am currently transferring back to hull but still av 2 wait till end of jan it's so hard I can cope with loosing my job, social life, driving, walking,life down the pan but the pain is unbearable I m drugged up just to get to the toilet or round the house! What I'm asking is do I contact pals and complain and is there others who suffer with hands and feet, they go like third degree burns. Thank u for taking time to read this

2 Replies

  • Hi

    I'm so sorry you are suffering. No where do you mention your GP.....were it me I would seek the help of GP.

    Good luck

    lots of hugsxxx

  • Thank u x my gp is not very good on sle I know more about it than them, they just leave everything to the consultant. It will work out right in the end.

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