Cipro or is it me

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In late 2015 I went down with prostatitis, Cipro 500mg twice a day didnt work so put on 750mg twice a day. Since had leg pains in top of legs also pains in shoulders and arms. At some point put on codydromol and ibuprofen at same time as cipro to ease pain.

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  • Posted

    It's not you OldBob, it is the Cipro.  Cipro and Ibuprofen are a very bad mix as well and you should have been warned not to take it or any other NSAID (or corticosteroid). 

    How long ago was it since you stopped taking it and how much do you think you took all together?  Did the pains start straight away or have they been getting worse?  Cipro is tricky stuff and just when you think it's gone away you get new pains somewhere else - but your doctor won't believe you!

    Go to this discussion

    http://patient.info/forums/discuss/fluoroquinolone-toxicity-syndrome-427305

    which was started by the Moderator.  It has useful website addresses and the posts give a lot of info about how to deal with this.  Good luck!

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    • Posted

      I was on Cipro for about five weeks all told first week on 500mg then month on 750mg, after about a fortnight I lay in bed one night shivering as if I had a chill then felt tearing at the top of both legs, the pain started and hasnt left me. Sometimes pain almost gone but never quite and sometimes flareups. Real aches in legs and buttocks. That the legs which means I struggle to drive sometimes even getting legs in car as a passenger can be interesting. Onto shoulders, I had a muscle strain in them before I got prostatitis, that got worse around same time as leg tearing sensation and again comes and goes. Ear sensation tinitus like as well now. Good job I am a self employed gardener eh nice easy job. Taking up to 6 codydramol and ibuprofen daily ever since, sometimes up to 6 sometimes a couple.

      What I would like to find is a non medical alternative to ibuprofen if its going to be longterm usage. Naproxen is too nasty as well.

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    • Posted

      Hi OldBob,

      I've replied twice but one has 'disappeared' and th eother is waiting to be moderated. 

      I was trying to advise you that Ibuprofen is contra-indicated (i.e.not to be used) with Cipro and all the rest of the Quinolone group of antibiotics.  It's in the doctors' 'hand-book' of doctoring although most of them don't seem to know this.

      Simply put, you should not have been told to take Ibuprofen - or any other NSAID e.g. Naproxen - along with the Cipro.  You really shouldn't take any more Ibuprofen as it's probably making your pains worse rather than better.

      Stick to the codydramol and anything you can find that isn't a NSAID - or contains paracetamol as that's already in the codydramol. 

      Also just wondering how old 'OldBob' is?  Cipro isn't advised for people over 60 or people with previous history of tendon problems.  Are you in the UK, Bob?

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    • Posted

      I was 59 when put on Cipro, my GP was wary and seems concerned that I had problems with it, he has said the problems are down to the drug. The problem is now higher up in the health service it took a year after the initial illness, Dec 15, for MRI scans to take place and Im not sure the consultant believed there was a problem with me, they have shown damage to muscle and ligament, thats my interpretation of long medical words by the way. What are the alternativers to Ibuprofen and NSAIDS. Im still waiting for the consultant to come back with what they can do for me, would pain clinic be any good at all. Not happy to see stop Ibuprofen without something else in its place and yes I am in the UK.
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    • Posted

      The problem with Cipro and the other Quinolones is that they can do this thing (generally called 'floxing'wink to some people but not others.  Most doctors and consultants etc are very sceptical but your GP sounds as if he was aware there could be trouble.  The doctor's 'handbook' I mentioned tells them what to give for each ailment Iif they don't already know' and for prostatitis it says to give Cipro with Ibuprofen for pain.  If you'd had epididymitis instead (same region!) the book would have said NOT to give Ibuprofen as it can be bad with Cipro and the others (there are 5 in this family).  It's an oversight and I have been writing to the Powers that Be about it - they say they're 'looking into it'!

      Your GP might also have been concerned about your age as Cipro really isn't recommended to people over 60.  You mentioned you had shoulder muscle problems before you took it but it got worse after. The Cipro damages your tendons and muscles all over your body - and does other stuff as well. 

      I suggested you look at this post

      http://patient.info/forums/discuss/fluoroquinolone-toxicity-syndrome-427305

      because the moderator has given some useful web addresses in it.  If I give an address my post will automatically be deleted (like the one above was!).  If you look at some of the sites you'll see a bit more about floxing and it will help you understand what has happened to you.  We have set up a UK support group called quintoxuk so you can take a look at our website if you like - the address is there on the post.

      I'd be surprised if the Ibuprofen is actually helping you but if you feel it is and don't want to stop all I can do is wish you luck.  Have you tried not taking it?  Do you take it at the same time as the codydramol?  If you take them separately do you get more relief from the cody?  Many 'floxies' do go to a pain clinic but they often have difficulty getting the pain person to understand what has caused their pain.  Our website might help you there.

      You're not so old - I'm older by a couple of years!!!

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    • Posted

      Hi Joni, 

      It's not good to take Cipro at all, full stop!  Even the leaflet in the packet says it's not advisable for people under 16 or over 60 which might indicate it's not so good for anyone else either.  Elderly people and children are more prone to problems especially tendon rupture or tearing.  Sometimes the symptoms don't show for weeks or months after you've stopped taking it.  It's basically a very strong drug that should only be used for the most serious infections, not for routine problems. Doctors prescribe it as it saves them from finding a more suitable antibiotic - because it'll kill just about anything, including your own healthy cells.  Look at the link I gave Bob above for more information.

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    • Posted

      Hi, miriam65408,

      Alan here, better late than never! I have been struggling to get some magnesium sulfate into my body ASAP without killing myself. Before loading I need to know what my current level is at present, then I need to monitor intake and retention, and finally I need to know when to cut back or discontinue entirely. My understanding is that this will call for periodic blood work and urinalysis. Evidently magnesium sulfate is very asymptomatic and requires a high level of competency on the part of the lab personnel to get reliable results.

      My question to you Miriam, and any Forum Member willing and able to provide an answer, is how do you folks go about this. Monitoring process and delivery routes are very much of interest to me. Please confirm or reject my assumptions as expressed above.

      I live in the northeastern corner of the USA (Vermont). The setting surrounding the Cipro reputation is, “You’ve got to be kidding!”. I thought I had successfully “house trained” my primary care physician, but I was also wrong on this one.

      I am 88 yrs old, retired with a background in engineering. My battle with fluoroquinolones started about 18 months ago and was identified in February 2017. It goes without saying, “I ceased forthwith” and have not taken any Cipro since. I hasten to add that, in my humble opinion, the medical profession at large is as much a victim as the rest of us. As far as systemic damage goes I consider myself extremely lucky when compared to your collective experiences. However, I am well aware that I am at the beginning stage. Cipro may still jump up and bite me in the sit-upon!

      Thanking you in advance I look forwards to your responses.

      Warm regards, alan86734.

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    • Posted

      Hi Alan  -well done for making it! 

      I've never come across anyone before who's so keen to find out what their mag levels are like before supplementing.  I think most people go with the general advice that FQs deplete their magnesium and therefore it needs to be restored.  This is probably because it would be very difficult to get a doctor to order the tests for you and it would cost quite a bit to get a private lab do it.  Also, I'm not a huge fan of blood tests as they only tell you what the levels are out there in your arm, not where all the action is.  (A Uk analogy is saying it's like checking the traffic on a country lane to see what it's like in central London!)

      Other sites like Floxie Hope may have a recommended starting dose, or maybe get a bottle of low dose mag and just settle for that.  You could perhaps adjust the dose upwards if you feel you're not getting enough?  Some floxies have reported upset stomachs or headaches after over supplementing. 

      As an engineer maybe you're being too practical about all this - my doc admits that all they can do is 'play around with the meds'.  Everyone is different and what suits one won't suit another.  Having a suite of blood tests taken today might be interesting but you could spend a long time obsessing about the results.  You've made it to 88 which is a great achievement so do what you think best but perhaps don't over-complicate things!

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  • Posted

    Hi, OldBob. My reply to you sent a little earlier this morning appears to have been lost. I'll send you another one later today.

    Warm regards, Alan86734

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  • Posted

    Hi OldBob,

    Here you are seeing the side effects of Cipro in action! It now takes me hours to comose and write a simple e-mail, and I end up making promises that I can't keep. Fortunatelly Miriam has stepped in and seems to be giving you solid and reliablle advice. She is way ahead of me as far as experiences, and suffering are concerned, but I insist on getting something out to you as soon as I can.

    Alan86734

     

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    • Posted

      Hi Alan, thanks for your kind words!  I'm not floxed but my husband was - which is why I started the support group.  Are you in the UK?  If you look at the links I gave Bob you'll be able to find our website. 

      I fully understand the time-lapse thing between saying you'll do something and finally being able to do it.  Don't worry - the main thing is you did it!

      All the Best,

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  • Posted

    I was given cipro 5 years ago for prostatitis, but the gp did not check for an infection. Now i still have the problems from 5 yrs ago, pain in the pelvis which looks like muscular, not so called prostatitis. However on top of that i have a long list of damage from the cipro, heart, tinnitis, eyesight, joints ,tendons +++ Dr denies it, does not want to discuss it. Damaged and abandoned.
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    • Posted

      Firstly prostatitis can re occur, be aware of where your pain is and how it feels. Muscular pains make a pest of yourself you have pain in joints etc get them to check for markers in blood and do xrays almost laying odds nothing to see but who knows, if they all come back clear and you can bear the noise try and talk them into MRI scans or similar they have finally identified exactly what was damaged around my pelvis and lower back ( I might know all the intros of Kraftwerk now). Mind I am still waiting for someone to tell me if they can help me one way or another with what they identified.
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    • Posted

      Its probably about time I updated this a bit, still in pain which varies daily with the amount of work I have done or with the amount of sitting about. Usually its deep in the buttocks as a dull ache, still have trouble getting up from kneeling and some arm movemnets can be very painful. Shoulder pain varies.

      I tried Turmeric in pill form for a while instead of ibuprofen until the pain grew too much so stopped that, still looking for an ibuprofen replacement to go with the codydromol I also take. On four of each a day less than a year ago it was down to two a day but a flareup stopped that.

      Waiting for a specialist physio appointment to see if I can get any exercises that might help. Taking up Tai Chi has helped me I think although it can be painful at times to move. Tiredness is ongoing now taking B12 which might be helping. Tinnitus comes and goes. I have filled in a yellow card thingy.

      I suppose Im learning to live with the limitations, does not mean I like them, I am doing physical work which can be difficult but might actually help me because I am moving not sitting still which can be very painful. So hours of driving or being a passenger is interesting, see lots more of the country really as tend to plan routes with stops on to get out and stretch body.

      Thats all for now, I would like to find alternatives to the pills I am taking is a definate as I worry about long term effects.

       

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    • Posted

      Hi 'Young' Bob,

      I often wonder what happens to people who post here so thanks for the update.  On trust me I'm a Doctor they did a quick study about turmeric and found that the pill form isn't as effective as the powder form (although much more convenient to take!).  You can probably search for the programme and see what they actually said about it as I can't really remember now.  It's definitely got a good reputation as an anti-inflammatory so perhaps a stronger dose or something is needed. 

      If you feel your pain hasnt worsened and you're learning to live with it and stopping the Ibuprofen didn't help much maybe you're just lucky in that the Ibuprofen hasn't adversely affected you.  One guy I know of took Cipro but was ok for 8 months THEN he took an Ibuprofen for a headache or something and - BANG - all his Cipro symptoms came on with a vengance!

      I think we all want alternatives to the pills  - plus we want safer pills that have been properly trialled with honest (not skewed) trial results.  Sadly this will never happen as pill manufacturing - and selling - is HUGE money!  If you're my age, hark back to your youth perhaps and try Cbd oil or some other high cbd herbal product (not high thc - skunk-type stuff, you want the more relaxing version).  The main reason it's not licensed is because there's no big money to be made as it's a natural product.

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    • Posted

      Hi Bob,

      I've replied but it's off to be moderated - and may never come back. 

      I was trying to encourage you to explore the more natural avenues - maybe I mentioned too many names.  Turmeric might be available in higher doses?  Or try cooking with it so that you increase your consumption?  There's another herbal remedy that you will be familiar with (especially ir you're my age!).  Look for high cbd as it's the relaxing element.  Stay clear of high thc - unless you want that kind of thing but it's so much stronger these days!

      Here goes, lets hope this gets through!

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    • Posted

      Good evening Miriam, I know someone who swears by his rollups. I know someone else who is very interested in the health benefits of products such as you are suggesting. Just been having a look its not cheap but then whats best for pain capsules from pressed seeds or oil from the plant itself. Quite prepared to have a chat with my doctor on this stuff.
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    • Posted

      Hi Bob, I've just noticd the reply I sent 3 days ago definitely isn't coming back.  Our moderator must have decided that I was pushing herbs too much!  I was trying to explain about the different types and parts of the plant and the strengths etc but never mind.  Basically, the oil in the capsules/bottles is veg oil, and it's used as a carrier for the cbd elemant of the plant which is fat soluble.  Any packaging should indicate the strength and the dose so from now on you should know as much as me.

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    • Posted

      Far be it from me to know as much as anyone about almost anything and certainly not as much as you about this lovely group of prescription medicines. You know I have never done drugs of any sort because of what I saw after friends and aquaintences took them and from personally needing too, got as high as I needed on beer. You then trust that your GP will only prescribe you drugs which will benefit you, As someone else said in this forum as well as those of us sick have the GP's not been properly informed about the effects of flouroquinolo.nes

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    • Posted

      Every person that I've come across who's been affected by these quins has asked 'why wasn't I warned?' or said 'If I'd had known I would never have taken them' plus, like you,  'do the doctors not realise how dangerous these things are?'

      The answer is, no, medical professionals have absolutely no idea how dangerous these antibiotics can be.  They are taught that the quins are broad spectrum and to be used as 3rd line of defence - i.e. if two other ABs have failed to get rid of an infection, call in these guys.  Most doctors, however, seem to get their favourites, especially names that are reinforced with lots of free goodies and holidays and whatnot from the pharma companies.  If they've had sucess in getting rid of a stubborn infection with a Quin, why wait and trisk the next one becoming stubborn when you can get rid of it straight away?

      Add to that the clinical guidelines that recommend Quins for certain conditions - and suspected conditions plus the official opinion that adverse reactions are so rare a doctor will be lucky to see a patient suffering a problem with these in his entire career and you have a recipe for handing them out like sweets.  The only restraint recently put on them is the antimicrobial stewardship proramme that tells docs not to use the 'Four Cs' unless they have no other choice because of the risk of causing c.difficile.  "Ciprofloxacin and the other Quinolones" are one the Four Cs (which is almost inviting doctors not to remember the names of the other Quinolones).

      It's very rare to come across a medical professional who will believe that the Cipro (or other Quin) has caused you any problems - because it's so rare!  For this reason, your problems don't get reported via the Yellow Card System (in the UK) unless the patient reports it.  Thus, the belief that the problems are rare is self-perpetuating.  Have you reported your problems?  And also updated the report?  And got your doctor and dispensing pharmacist to do likewise?

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