8 Replies

  • Posted

    This a good result for those who made their voices heard at the conference.

    Well done Miriam who put so much work into her speech and for the help and advice she gives here and on her Facebook site.

    Now our problems will have to be listened to.

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  • Posted

    This is great news that the EMA have formally recognized the serious problems these drugs can cause. I had a short course of ciprofloxacin in 2006 for a UTI and ended up with IC.

    I was saddened to see that IC not noted as a potential side effect. Anyone else with IC out there ?

    Caused by cipro ?

    thanks

    SUSAN

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    • Posted

      IC ? interstitial cystitis ?

      I'm going to carry a copy of the report when I go to hospital consultations as I've had about four consultants deny the link.

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  • Posted

    Thanks for posting this and thanks for thanking me although there was a huge number of people involved from all across Europe.

    The recommendations didn't go as far as we'd hoped in that they won't make it a diagnosable condition but they have promised to write to every doctor and pharmacist in Europe to explain more fully about the new restrictions. We can only hope that more doctors will take this very seriously now.

    Hi to Susan, I haven't actually come across anyone else who thinks Cipro may have caused their IC but nothing would surprise me. Cipro and the other fluoroquinolones can cause damage in parts we didn't even know we had, so causing IC is very possible. I'll look further intothis when I get time.

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    • Posted

      I was slightly surprised that the link got through without first being vetted by the moderator.

      You get all of the credit as you contribute so much to the Forum.

      I'm puzzled about "diagnosable condition " as to me the symptoms are so variable that they could pass for many other conditions. I've even been told that I have a form of CMT although genetic testing and other tests did not confirm it.

      Now that there is evidence of the connection with the drugs who should patients see. I've been referred or chosen to see various ones without any diagnosis or suggested treatment.

      Neurologists would appear to be the most likely but most seem to cover the more common conditions and very few specialise in the more obscure problems. I was told that the centre of excellence is in Bristol.

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    • Posted

      I think this will be a big problem as there are so few consultants who know anything about it at all. They've spent so long denying it and playing golf instead of reading up on it that they'll now be at a loss!

      I do hope that the recommendations and forthcoming letter to every doctor will have them rushing to read up on it. We also need to make sure NICE are on board and will change their guidelines as the prostate forum has many men asking what happened to them.

      The main experts should be the mitochondrial disease people as this is the main problem with FQs , sadly there are only 5 centres, so I'm told, and they are not particularly up on this either.

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  • Posted

    sorry for delay in reply Derek , yes IC is interstitial cystitis .

    and thank you so much Miriam for all your hard work

    I have come across other women with IC caused by cipro , and found a post from a USA doctor online saying Ciprofloxacin should not be used for UTI's because of risk of IC. I know for sure it damaged me and caused this disease and feel so angry with the careless GP who prescribed it without even doing a urine test

    for 12 years I have had to live with frequent intense pain ,having had several periods of long term sick leave because of the IC including 2 x 12 month periods.

    I work for the NHS and the cost to the nhs due to my absence from work and countless medical appts could have all been avoided if the cipro had not been used....words fail me when doctors turn a blind eye ,

    thankfully my current GP has always said " you should have never been given that drug"

    to have it completely banned would be my dream come true

    well done both of you for all you are doing to spread the word

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    • Posted

      Susan, I'm sorry for what you are going through, but these words do little to help. What I can do is to wish you a Happy Thanksgiving, even if you are somewhere this is not normally celebrated.

      Best wishes! alan86734.

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