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what about the uk? alternative?

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  • what about the uk? alternative?

    elmiron is not legalised in the uk so is there an alternative? i am a new diagnosed patient and desperate for relief!
    please help!

  • #2
    Tiger

    You might give some of the other alternatives a try such as Algonot's Cystoprotek which you can find on this site at the IC store. I have used this product and felt it helped, it is also a bladder coating as well as reducing inflammation.
    Sammi

    Sammi

    Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
    Diagnosis: IC, PFD (both in remission)

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    • #3
      Elmiron might not be legalised in the UK but my son aged 27yrs is has been prescribed it by his urologist - here in the UK it takes that long to be diagnosed the only thing left to diagnose is Elmiron. My son told his urologist about it and he looked into it and gave him it - it could be your uro doesnt even know about it Not that it did any good
      Unfotunatly my son is just getting worse and worse and they are looking at the options of removing his bladder - as i Post

      i am beside myself with worry and spend my whole life stressing about IC - even though i dont have a clue what it feels like - but if you are all going through what my son is going through my heart bleeds for you

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      • #4
        You can get Elmiron in the UK but it is prescribed on a named patient basis. Your GP cannot prescribe it, you can only get it through the urologist. Usually you can get it through the pharmacy at the hospital but it can take a while to come in. I have had it in the UK, but unfortunately for me, I cannot tolerate the stomach side effects. I used to live in the US and took it for a while there, but it made my stomach real bad. I used to have diahorrea for up to 10 times a day, but it didn help my IC. I have tried every way to take it, eg taking out of the capsule and I have even spoke to the company that makes it, but I just can't tolerate it.

        When I moved back to the UK, I thought I would give it another try but yet again, I had the stomach problems. however, I would tell anyone to at least give it a try.

        So ask your urologist about trying it on a named patient basis

        Anne

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        • #5
          Hi i live in the uk and have been having elmiron for two years now. No side effects and some relief. It was initially prescribed by the urologist and had to be cleared by my GP's primary health care trust and now my GP writes a handwritten script when i need it. My local pharmacy ships it over from Italy in 48 hours. I even changed GP surgery recently and my new surgery have also agreed to prescribe it. Give it a go.
          mum4all

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          • #6
            I too have had Elmiron prescribed to me in a UK hospital; it's not illegal here.

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            • #7
              Tigerlily77 you may have confused my words. Elmiron is not licensed in the uk, but it is prescribable on a named patient basis. I am on it, and have only just been prescribed it. Some patients have had difficulty getting on it,some haven't had a prblem I believe from reading the forums. I do not know if it will work for me as I have only just started it.

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              • #8
                Me too

                Hi all,I have also been prescribe it about 2 weeks ago, im in the uk and so far i just feel sick a lot. Apparently it has been described as the gold ticket and my last chance locally for help.

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