Historic Summit: Flox and Tox Get Together

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June 13, 2018 | 8 Comments


  1. Thank you very much floxies!- if I didn’t read this blog I wouldn’t know a fraction of what I should be informed about. I recently made an FOI to ask whether any alerts for psychiatric drugs had been made recently. After querying what I meant by psychiatric drugs specifically i was referred to MHRA website . This states that ‘Drug Safety Updates’ are issued as well as ‘Dear Healthcare Professionals Communications (DHPC)’ which are issued by the ‘marketing authorisation holder’ (not sure what that means). These are ‘to highlight updates particularly if actions are needed to highlight or minimise risk’
    ‘Drug Alerts’ are communications to healthcare professionals to notify them of possible problems with a medicine that require aspects to be checked prior to use..’
    let’s not hold our breath for the MHRA and it’s huge team to do it’s job, Who knows how many other unsafe drugs are still being prescribed? especially as somewhere there is a tiny note stating they are ‘accredited by NICE’.

  2. If ever it needed proving to me that RxISK.org is a life saving resource, my husband’s experience last year in connection with Cipro was crucial. He is well over 60, a very fit, agile chap who loves keeping active in the outdoors. He loves to walk and sail, (and, for example, today he’s working alongside builders helping to slate a roof on the Arts Centre we are renovating in a stable block destined to offer a place for depressed and anxious folk to come to spend time being creative when wanting company and support). He loves to be active. He has hardly ever taken antibiotics during his longish life. He hardly ever visits the GP. He drinks very moderately and occasionally, has never smoked, eats sensibly, takes responsibility for his health. But he does worry about anything ‘going septic’ because his father, in the 1930s, got septicaemia from a wound not treated with antibiotics but, unbelievably the practice then was to cover it in plastic and hope this would sort out the infection. It was the experimental use on him of the latest discovery of antibiotics just in time that saved him.

    So, last year, suffering a bladder infection, (urgency, cystitis etc) my husband rang his named doctor GP at our rural surgery and was prescribed Cipro. No urine sample was taken, they took his word for what was wrong. You have to wait weeks for an appointment, so he felt he needed something fairly quickly. It was a Friday, and we collected the Cipro from our practice pharmacy. We didn’t suspect a problem till we read the Patient Information Leaflet before starting the course. It mentioned tendon damage and was not to be prescribed for the over 60s. “That’s me” he said. Then we checked RxISK Blog on Cipro, and read with mounting horror what this drug had done to so many people. Horrendous possibilities by taking it.

    But what to do about his raging bladder infection? No surgery on Saturdays. And anyway we’d have to query the rightness of the doctor in prescribing this to an ‘elderly’ man, which would annoy him. So we got some cranberry juice and we used it all weekend, with hot water bottles in the affected area, and on the Monday we got our courage up and rang the surgery again, asking for advice from another partner there who we knew to be more approachable than the one who had prescribed this drug. And he said, no worries, you probably don’t need an antibiotic but if you find the bladder problem doesn’t settle in a day or so, I can prescribe a much less powerful antibiotic, just ring in and let me know. And it did settle, and he was saved from what Cipro could have done to him, and his and my gratitude to RxISK is boundless. For had he suffered like so many others, all his joys in life would have been curtailed and our future much changed. I remember though how our conversation went, “I can’t tell Dr H what to do, he will be furious”, says husband. “But if you take it, look what could happen to you. Which is worse, losing your tendons and getting neurological damage, or making Dr H angry?” It’s a no brainer. And next time we visited Dr G. ‘the approachable one’ we got this family of drugs flagged up on both our Notes on the computer as never to be given to us ‘due to allergy’ unless we were at risk of death, and possibly only even then after careful weighing up of options with us.

    Thank you RxISK for saving us, and doubtless many many others.

  3. I have done the same RE fluoroquinilones. I
    have asked for it to be put in my medical notes quite a few years ago, that I am allergic to them.

    The reason I got it put in my notes was that at the time I was withdrawing from benzodiazepines, and fluoroquinilones are GABA antagonists, and something a lot of people don’t know is that if you are dependent on benzodiazepines, taking fluoroquinilones can put you into acute benzodiazepine withdrawal, which can be very unpleasant, and and sometimes even dangerous.

    Battle against tranquillisers (a charity in Bristol), advise against taking fluoroquinilones while you are on benzodiazepines, or after withdrawing from benzodiazepines, as people have complained of having a sensitivity to fluoroquinilones, years after coming off benzodiazepines.

  4. You are, according to the Cipro PIL, (April 2016) supposed to talk to your doctor before taking this medicine if you are 50 or over, and yet then they go on to say ‘Adults (including the elderly)’ !! – my exclamation marks – ‘the usual dose is 250mg four times a day’…..
    So, why do you need to talk to your doctor if you are over 50, surely you’ve just been talking to him whilst he’s just prescribed this for you so he’d first of all have checked how old you are on your Notes if it’s that crucial….wouldn’t he?….” And what does ‘elderly’ actually mean in this context? They even give this stuff to kids aged from under 2 to 10, what a ghastly thought.

    In the listed possible side effects, the neurological symptoms are not mentioned, and it just says ‘joint or muscle pains or fever’, nothing about tendon damage. I thought we’d seen it there but no, husband had read in the Press about a lady in UK now using a wheelchair due to tendons in legs so ruined that she can’t walk.The whole PIL comes across as fairly laid back, unless you get liver or kidney disease or a severe skin rash. It apparently changes the numbers of blood cells.
    Made by Athlon Laboratories Limited, Ballymurray, Co. Roscommon, Ireland.

  5. An update. Just visited our very nice GP on another matter but in passing, just checked to be sure that anything in the fluoroquinilones family will not be prescribed to either of us. Slightly bemused he said, yes, he’d amend both sets of Notes (I thought we’d done it 2 years ago, but it obviously needed doing again). But why do you want this, he asked. Because it can be so dangerous, said we. Oh, I think the jury is out on that one, said he. We tried to tell him about the European Medicine Agency inquiry this June but he didn’t seem to be aware that there were any widespread dangerous side effect to this antibiotic anyway. And he didn’t really make much comment. Delightful open-minded person that he is, I don’t think he really thought we were talking sense. I felt a bit sad afterwards. We couldn’t interest him in this, he obviously thought any side effects were very rare and I felt, he didn’t think it mattered much. We didn’t labour the point, he had kindly listened, but we are not doctors, so what do we know? Well, we know about self preservation….

    • A lot of doctors can have a belief that they, and only they, are the fountain of knowledge, and can get offended (sometimes very offended) when a patient tries to tell them something they don’t know. They see it as a questioning of their competence, or a threat to their ego.

      I have personally experienced this many times over the years when trying to warn doctors that sexual side effects can persist. I have even been shouted at by one doctor who refused to accept that the sexual side effects can persist.

      It is sad really, because often patients can have a lot to teach doctors, and there is often an opportunity for doctors to become better doctors, if they listened to, and more importantly believed their patients more.

      I think it is this power imbalance along with doctors refusing to humble themselves a bit and be open minded to the fact that they can learn a lot from their patients (and there is no shame in this), that makes it a lot easier for the harms of prescription drugs to go un challenged.

      If only there was a way of levelling this power imbalance, healthcare could become safer and better for everyone involved.

    • Heather, I hear you on this. My situation does not involve a fluoroquinolone, but may still be relevant.

      I took the antibiotic, Macrobid, and after 2 days developed numbness and tingling in my feet. On the third day it was worse so I stopped taking it and reported this to the urologist’s office. Was told Macrobid doesn’t cause this. I said, “have you read the product information sheet?” and she handed the phone off to someone else who changed the subject, lol…

      A few days later I was seen by a resident in primary care, someone I’d never seen before, and reported this as well as problems I was having due to the condition I was being treated for. Without being up to date or having full information about my situation, she diagnosed me with somatization (and without discussing it with me — she just wrote it in my record — and so I hit the ceiling when I read it later).

      Over the next week I asked three pharmacists who all said they’d never heard of this but would never rule anything out. Finally, I mentioned it to another doctor at a visit and she looked it up on her phone and there it was: neuropathy was listed as a rare but serious side effect of Macrobid. (And if you look up patient reviews for this medication you will see about 1 in 10 of the the reviewers report having this adverse effect. Many state it is painful and ongoing after the drug is stopped).

      Because doctors are not thoroughly uneducated about the medications they regularly prescribe, we look like clowns to them. No wonder no one had heard of Macrobid causing neuropathy when instead of reporting adverse reactions, doctors deny it’s an effect and diagnose mental illness.

      The sad thing is, I hesitate to even post even though I’ve seen the product information sheet with my own eyes, and have finally discussed it with a doctor who took me seriously. Collective, professional denial is what really does a number on your mental health, especially when you have a long history people telling you what you know is not true.

    • Hi Heather, I’ve only just thought to look at the replies to this blog! I’m so glad to hear how your husband escaped being potentially floxed and must say it is absolutely typical of doctors not to check on the suitability of patients to receive Cipro or the other Fluoroquinolones.

      My own doctor is not at all interested in the efforts I and others have put into raising awareness about FQs. He knows I think my husband was affected by Cipro but just told me not to not to believe everything I read on the Internet when I tried to discuss it with him. When I told him I was going to address the EMA last June, his only question was “What does EMA mean?”

      The EMA have promised to write to every doctor and pharmacist in Europe about their review findings so hopefully awareness will be improving now.

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