Do you know of patients who are having to fight to access a medicine?

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As part of Genetic Alliance UK's / Rare Disease UK's work to access to medicines for rare diseases, they are interested in collecting your examples of medicines that patients are struggling to access on the NHS.

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  • HI Suzym2u.

    Well I am pretty keen to get some treatment for my peripheral neuropathy - a treatment that would halt the progress of damage to my nerves rather than simply subdue the pain.

    I've been diagnosed with RA and Hypothyroidism but not with Vasculitis. My consultant seems to be waiting for my RA to return in the form of synovial swelling before he will put me forward for any Biologic drugs and so far I've failed to tolerate three DMARDs to date. Meanwhile I have the most horrible neuropathic symptoms that appear to be worsening and am waiting to see a neurologist in 3 week's time.

    I've had these symptoms for a few years now but no one in my medical team has mentioned Vasculitis as a possibility. They have ruled out B12 deficiency and Diabetes and they don't think it's active RA so I'm wondering how much more my peripheral nervous system needs to deteriorate and how dizzy and exhausted I need to feel before one of them will offer me another immune-suppressant. I'm told this is because I don't meet the full DAS28 criteria currently, despite having systemic inflammation, dry eyes, nose bleeds, a follicular rash that comes and goes on my legs and severe (widespread and very painful) peripheral neuropthy. The Biologic drugs are often better tolerated than the traditional DMARDs and I would like to meet the criteria so that I could at least try them or IViG.

  • please contact Louisa she will help with any advice and will be interested in talking to you

    All the best

    Susan

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