That's not even close to a proper description of what the FDA said. For some simple infections (sinusitis, bronchitis, and uncomplicated urinary tract infections) they advise against Cipro "for patients who have other treatment options."

For pouchitis it's still a first line treatment. It's not risk-free, of course. 

I agree. There absolutely are risks associated with antibiotic use. However, this is not a "never use" type of thing. Still, you should use the smallest dose for the shortest duration that is effective.

Jan

Scott, Both you and I are correct. Here is a quote from the article I referred to which illustrates that fact.

The new boxed warning advises patients and doctors that these antibiotics may cause potentially permanent damage to muscles, tendons, joints, nerves and the central nervous system. In patients with minor infections such as sinusitis and bronchitis, the risk outweighs the benefits, the FDA panel found. In these cases, other treatments are often available and the agency strongly discourages doctors from prescribing them.
While the FDA warns about tendon and nerve damage, new studies surfaced linking these drugs to more harmful and potentially fatal medical conditions, aortic dissection (tear) and aneurysm (bulge).

    I posted the cipro information and link to inform people. This community has intelligent people and I thought most would want to read  about the risks and evaluate their own situation.  I had just read the article a few moments before posting.  I was on cipro for 5 years and suddenly realized some of my medical issues could have been caused by cipro. When someone posts information it is done with the best of intentions.  I believe this is a community designed to support one another through difficulties and educate. I believe a warning about Cipro is important.  Even though Cipro is a "first line" treatment, we should make an informed choice and have facts so we can ask our doctors. My intent was never to tell people not to take the drug. Rather, I believe anyone on Cipro should do a risk-benefit analysis. I know if I had known the side effects, I would reconsider my options.

Elyash, I understand that your post was well-intended. It's also true that the revised warning really was based on the discovery of additional, significant risks. I'm not sure what, exactly you think someone should do when reconsidering their options, though. My alternative to Cipro is near-incontinence. I tried other antibiotics but they failed, and I found the lowest effective Cipro dose. That's prudent with any medication. I could try biologics instead, but that just switches my major (but unlikely) risk to lymphoma. No one should take Cipro unnecessarily, but it's also sensible not to frighten people into suffering with out-of-control pouchitis. 

Each of us knows our own bodies well. As each person is different and each circumstance is different, I would never advise someone to stop taking a medication. And, as I said before, the purpose of my post was simply to provide information, certainly it was not meant to frighten. However, I think its prudent, if taking Cipro or contemplating Cipro to have a conversation with one's doctor. Perhaps there is something new that has less risks. I comprehend that for many people stopping Cipro is not an option.  Trust me, I understand your reluctance concerning biologics. Remicade caused me a 12 day hospital stay.  I am staying as far away as I can from biologics because of my experience. But if it becomes a choice between biologics and a take down, I honestly don't know what I would do, 

    I don't know if FMT  (Fecal transplant) interests you, but I have been calling specialists in pouchitis and specialists in FMT to get their thoughts about its effectiveness for pouchitis. I have also called two clinics.  The kindness of these world-renown doctors in answering my e-mails and taking my phone calls has been incredible. I think it is a subject of great interest to them. As you probably know FMT has had a profoundly positive effect on CDiff.  One of the experts I spoke to said if it didn't help my pouch, it would help my fibro.  There haven't been any really good studies on pouchitis and FMT.  However, one is currently taking place in California and another is scheduled in the south.  My own doctor is starting to write up a study on pouchitis and FMT.  That is one kind of hope, but as with anything there are risks. The experts I have spoken to feel the the risks are minimal. However, if you are among those that the minimal risk is a reality for you then, the risk wasn't really minimal for you. I AM NOT ADVOCATING FOR FMT.  I am mentioning it as a potential alternative, one that I am researching to analyze the risk-benefit for myself.       

    I don't know if you have tried to repopulate your microbiome using VSL3 DS.  I am currently following a protocol where one takes Xifaxan 1.2 grams twice a day for two weeks. Then  Xifaxan is stopped and one begins to take VSL3 DS. I know you said antibiotics haven't worked for you, but so far the Xifaxan has improved urgency, stopped the painful cramping and lowered my bathroom usage by 60-75%. I will see how the VSL affects me.  One of the experts I spoke to said symprove works better then VSL3.  When I mentioned this to my doctor she had never heard of it and she is a leading expert in Crohns/UC.   Symprove was thoroughly researched at Kings Imperial and University College by Professor Bjarnasson and he had excellent results. I am trying to get ahold of his studies. 

            I want to emphasize in this post that I am not trying to get anyone to alter what they are doing.  I am just stating what I am doing and if what I am doing helps someone or germinates another idea, then I would be most gratified.

                                         Elyash

Elyash, thank you for your post. I have posted warnings on here before re FQ antibiotics also as I think as a group we are at much higher risks of getting these side effects due to being prescribed much of them due to the nature of our conditions. The health issues caused by these side effects may also be more likely to be attributed to causes other than the prescription because of our pre-existing health issues and fears of litigation. I was wrecklessly prescribed a lot of Cipro (to delay a procedure) and it's been the worst decision of my life to not have been more informed.... Please search for my post on the group 'have you been floxed ? which has many links you may be interested to explore further. The tragedy with these drugs is that the side effects are often missed because they can be immediate or delayed by months. Dr Jay Cohen wrote a book about these drugs being the greatest medication tragedy of all time, it's on amazon. His papers on medication sense.com are a very interesting read. I too want to help fellow patients know the risks and also it's important to know to recognise the early signs if ones begin to experience them. 

Thank you so much.  I will definitely follow your advice.

Scott, agree that all medications have risks and of course people need to have their pouchitis treated effectively. The issue is that there are often safer antibiotics / or other treatments that can be trialled first (albeit you personally have explored them all). Cipro is handed out very easily and patients are often poorly monitored for signs of developing toxicity. The other issue is that as Elyash mentioned, patients need to be fully informed of potential risks so that they can give informed consent. I agreed to take months of Cipro but looking back it certainly wasn't what I would call informed consent.

 Elyash, there are great support groups on Facebook which may interest you or others. Flouroquinolone Toxicity Group is the main one.

What struck me most reading the thousands of testimonies, was the wide range of health problems people are reporting (but they are all following same overall pattern of various neuropathies, chronic tendon problems/ musculoskeletal and joint problems, fibro, heart arrhythmias, digestive problems, CFS, tinnitus and CNS effects like memory or poor cognitive function, depression, anxiety etc) many after being young, athletic, completely healthy and then taking only a few pills or a week long script.

Given that our group can take just so much Cipro, (OFTEN WITH INADEQUATE WARNINGS) it made me wonder about the validity of the kinds of diagnoses we can attract years after IBD and how much FQ antibiotic side effects are being missed by the medical community.

Like you mentioned, I would have made VERY different decisions if I had been given adequate warnings about the potential for these drugs to cause so much damage. But our doctors I firmly believe are doing their best. They are basing their clinical decisions on the literature which reports 'very rare' side effects (usually only focussing on Achilles' tendon), and examining one category of side effect, thus not capturing the multi-system wife-spread difficulties that can occur). The delayed side effects certainly don't help the situation in terms of accurate reporting of adverse events. The literature contrasts rather dramatically with the reports of tens of thousands of patients all over the world, whose anecdotal reports echo much more closely the patients described by Dr Beatrice Golomb in her recent case series published in the BMJ http://casereports.bmj.com/con...2015-209821.abstract

There are pharmacists, nurses and many doctors in the groups who readily admit they never would have believed their patients reporting the problems they are now experiencing, had it not happened to them! So it seems the majority of doctors do not know about flouroquinolone toxicity and therefore may not be equipped to identify the early signs of potentially disabling or dangerous adverse events when we report them. My point is illustrated with this paper: http://medicationsense.com/art...eactions042011.htmlA rheumatologist told me at the time I was too young to experience Cipro tendon problems (not true) and it would present in legs (not always). Despite having burning, throbbing, weak, aching arms, and feeling like I was literally dying, none of my doctors thought anything of me taking many more months of Cipro... my concerns were dismissed.. and my doctors were excellent. 

As for treating the problems after they occur? There appears to be little to no help or acknowledgement when these side effects hit people and the over-riding theme from the support groups is one of not being believed, with the exception perhaps of experiencing frank Achilles' tendon rupture during a script.

Some world renowned academic/ clinicians are now pushing the FDA to acknowledge that these drugs can cause MITOCHONDRIAL TOXICITY I.e can damage human mitochondrial DNA as well as bacterial mtDNA, hence the spectrum and chronicity of problems that can be seen. This is not fear mongering. The FDA's own research actually describes this (I read the full report, someone got it under FOI). Other research also supports this : https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3760005/. https://rxisk.org/wp-content/u...ennett_JCSO16_02.pdf

Not on the drug information leaflets though. Nor have the FDA informed hospitals and doctors about their most recent, very tardy and inadequate warnings. It was patient groups who put enough continued pressure on the FDA to finally put out these warnings via citizen petitions... No warnings at all have been made in Europe to my knowledge.

Dr Beatrice Golomb's work (San Diego), Prof Mark Noble (University of Rochester), and Dr Charles Bennett renouned Oncologist/ drug safety expert are all worth looking up http://www.pharmedout.org/pdf/...Bennett.pdf and Dr Jay Cohen's book I mentioned.http://amzn.com/1518626866

It has probably taken me over a year to come to terms psychologically with what I have learned and it has certainly convinced me of our need to be skeptical of agendas at the top of the food chain so to speak.

If I knew I was being handed antibiotics that are used in Chemotherapy treatment because of their excellent cell destruction properties that were developed to fight Anthrax and the Plague, that were never tested for their capacity to cause mitochondrial damage in mammalian not just bacterial cells, whose previous sister drugs have all been removed off the market for being so dangerous, I just might have made the choice to have a fistula dealt with sooner...