Afraid taking Ciprofloxacin has increased pain in my drop foot & PMPS. Anyone else had this SE?

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Have had increased nerve pain since taking this antibiotic - was taking for bladder infection. Doctor said there would not be a problem sad

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  • Posted

    Sue i dont know what PMPS is , or SE, but i know a lot about ciprofloxacin for a bladder infection. I have lost 5 yrs of my life because a young dr gave me cipro for a bladder infection. When i queried the side effects, he said you should be ok......

    I got 90% of the side effects [ damage ] , most of them permanent. Its a continuous nightmare. Hopefully you will be more lucky.

     

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    • Posted

      What damage did u sustain? How did you know it was happening?

      I had compartment sybdrome in my left leg after a knee fracture, they has to do a fasciotimy to save it & replace an artery - left me with nerve damage in leg & foot - most of my foot is numb, except for pain.

      I feel the pain has ramped up to where it's hard to walk on it sad

      Did you have any pre-existing nerve problems? I also have nueropathy from chemo 4 yrs ago.

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  • Posted

    Hi Sue,

    I'm not sure what PMPS is but I'm gussing post-menopausal or post-mastectomy pain maybe?  Any kind of pain is not helped at all by Cipro, and if you had drop-foot already Cipro would certainly make it worse as pain on the soles of the feet is a very common symptom.  Most doctors don't know the first thing about it so of course s/he would prescribe it and worsen your pain, wouldn't s/he!

    It's often prescribed for a bladder infection that won't clear up.  It should only be given as 3rd line of defence i.e. if two other antibiotics (AB) haven't worked.  Did s/he take a culture to find out exactly what the problem is?  So many docs don't bother.

    Increased nerve pain is a common symptom as well.  As for your doctor saying there would not be a problem - ha, we know it often is a problem!  Did you take it for a week?  Has the infection gone?  Hopefully it has and the doc won't try to give you any more. 

    Please make sure you never take Cipro or one of the other Quinolones again (there are 5 so have the doctor put it put on your notes to make sure.  Do not take Ibuprofen or any other NSAID ever again!  If your side effects go away these can actually kick them off again, also Predisnolone and steroids like that can do the same.

    Go to the page on this site

    http://patient.info/forums/discuss/fluoroquinolone-toxicity-syndrome-427305 which will give you useful addresses and the discussion will have a lot of useful information for you. It was started by the moderator as I can't give addresses here.

    Many people get away with just a bit of pain which goes in a couple of weeks.  Hopefully this will be you - so long as you take care never to take it again.  Because you had drop-foot and other pain already it may get worse and it will be no comfort for you to know that your doctor should never have prescribed this for you.

    I'm sorry if this is bad news but you did ask.  John616 knows only too well how bad it can be.  Good luck and do find out more about it from the link I gave.  Post again if you have any questions.

    Miriam

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    • Posted

      Thank you, i will check out the link. I picked up script on a fri, called her office as soon as i read the warnings - they were gone til Monday! Called the pharmacy & they said i shouldn't have a problem with it - sooo i took it til monday ( my infection symptoms were bad) tuesday went to urologist who wanted to extend precription for 2 more weeks, so i asked him to switch it. Switched for 2 days & the bladder symptoms came back with a vengeance - so i switched back sad but now my foot pain is terrible, don't know if damage is being done i can't see or feel!? Who would you even see for this?? I have been reading that the SE's (side effects) can continue long after you stop taking it!! Completely miserable to think i have made my situation even worse

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    • Posted

      Hi Sue,  I don't honestly know who you do see; your GP is the first person but they are all taught that Cipro is a wonder drug.  Ditto the urologists!  They are told SEs and ARs are rare so never believe anyone who walks in and says they've got pains after taking this drug.  It's not rare as you'll see when you start looking on line at some of the groups - these have formed in self defence because they can't get any help from the docs!

      Did they actually grow a culture for your bladder infection?  There would have been a safer AB that you could have taken. When you switched, how did they know what to switch it to?  Most ABs are either for gram -ve or gram +ve bugs but Cipro is useful because it can deal with either so lazy doctors and urologists (and others) just prescribe it then don't listen if anyone says they have a problem.  With your history that you described to John, including the chemo, I would say that you shouldn't have been prescribed Cipro  in the first place - they should know it can make nerve pain worse.

      The side effects can continue, or even get worse, after you stop taking it (something else the docs don't understand).  They probably wouldn't warn you about ibuprofen - some even prescribe it for the pain - which just makes things worse.

      I'm so sorry this has happened to you and you were given bad advice.  Damage might be occuring in your foot as the tendons are in danger. You must try to keep off it as much as possible and be very gentle in how you move about.  I've heard it described as many hundreds of tiny tears taking place which can finally lead to a major rupture.  If you get referred to a physiotherapist be very careful as they can do much more harm than good if they don't understand what has happened to you.  I can give you a link to a paper about physio treatment if this is something you get offered.  My best advice to to rest and rest again and hopefully the damage won't get too bad.

      Most people who take Cipro find out as much as they can about it from forums such as this one - this is where I started a couple of years ago.  If you click on Fluoroqinolone Antibiotics at the top (just above your original question) it will open to show you all the discussions on this topic.  You'll see my name on some (and John's).  You'll learn a lot - it's a pity the doctors don't come on here!

      Are you in the Uk?  Look at the UK group's website for a beginner's guide of how Cipro does the damage.  Also for tips on how best to look after yourself now.  I'm sorry but completely understand how miserable and possibly frightened you feel but you are certainly not alone.  The doctors may not understand what you're going through but there are many 'floxies' out there who do.

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    • Posted

      This is truly scaring me now...there must be some way to tell if damage is happening...or to prevent it from getting worse!?

      After such a short time?

      I switched back to the other antibiotic & the bladder issues are back, so it must not work as well on whatever infection i have. Going to a new urologist tomorrow, hopefully he can prescribe something stronger without the Cipro side effects. All this because i wanted to try a new GP sad

      I am in US, btw

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    • Posted

      Hi Sue, sorry if this is scaring you but there's no point me saying 'Oh, you'll be fine' as I truly don't know! 

      The first thing is to make sure your urologist finds out exactly what your infection is caused by, so you can be given the appropriate AB.  He MUST know that you have developed bad pains since taking the Cipro and that you had previous problems in your foot.  The other Quins, or FQs are Levoquin and Avelox plus others - make sure he checks!  They ALL have Black Box warnings so if in doubt you check as well.  Hopefully you are not too badly affected yet but you must make absolutely sure you don't take any more.

      Try not to worry too much (my fault!) as stress and anxiety create inflammation and just make things worse.  What's done is done so put your energy now into being positive and making sure you don't take any more of this evil drug. 

      Take Care!

      Go to the Floxie Hope site and print off any information that you think will help you.  Remind your doc and urologist that the FDA said only last July that FQs should only be used in serious cases where the benefit outweighs the risk.  For UTIs and other infections they said the risks of permanent damage seriously outweigh the benefits.

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  • Posted

    Sue, as soon as i took the first cipro tablet which was the first pill in my life at 66 yrs, it gave me nightmares and sleep problems instantly.

    Over the next 4 months i could not believe what was happening, which included brain fog, eyes, ears, tendons, joints, muscle loss, weight loss, fatigue, heart, severe digestive probs, hair loss and more.

    Five yrs later i am still in a terrible state, abandoned by the dr who does not want to know. Not one word of advice from him.

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    • Posted

      So sorry to hear you have had such awful side effects from an antbiotic! I am livid that i was prescribed this awful med when there are so many others to choose! To top it off, just went to urologist & he thinks i have a yeast infection & didn't know why i was even put on anti's!! Who do you believe!??

      I am feeling a bit better after stopping them but still fear future side effects - it did relieve my bladder pressure & burning for a few days, but was not worth the risk continuing.

      Unfortunately i already suffer frommost of what you describe after breast cancer treatment 4 yrs ago - my body has been falling apart ever since sad & no one wants to help you once you're done with treatment...

      Hope you are able to find someone who is willing to find out what will help you find better quality of life! Just keeping us alive is not good enough!

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  • Posted

    I remember looking up breast cancer uk 4 yrs ago, and was amazed that the chemo side affects /  damage were similar to cipro. Such a lack of knowledge in the medical world. Wish you well Sue.
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