Hi Chris.
My symptoms with the tendons, sound like yours are at the moment - lots of aching, especially by the evening. At first the pain was horrendous and I couldn't even lift my feet off the floor; I could only shuffle (luckily I have wooden floors). Both Achilles and all the tendons round my ankles plus under and across my feet were affected and I could only lie there, with my legs wrapped in wheat bags that were heated regularly in the microwave and I took (still do) liquid morphing for the pain.
I saw a musculoskeletal specialist! who sent me to a physiotherapist. He gave me exercises to do with Resistance Bands but these made my knees hurt and the pain afterwards was really bad. He did say it would take months of physio but in the end, after discussing it with my GP, I stopped going, because the Physio was setting me completely unrealistic goals. My GP felt, as I did; that I knew my own body and I could do gentle stretches and heel lifts but slowly. I have been recovering myself really, without doing anything specific. I have been told that Physios who have had no experience of this unique type of tendon damage, should be avoided, as they don't understand that it is unlike a repetitive strain or sport's injury, as the breakdown of the collagen is all over the tendon and that it's a case of gently trying to help the collagen repair faster than it breaks down. The action is like a cascade throughout the body and it's ongoing, as opposed to stopping once the drug has left the system - it never actually does.
Sorry, I've banged on a bit here.......I've heard swimming is good but I can't do that as I have other health issues that prevent me. I do believe that slowly slowly is the way, with much care.
Plodding on
No need to apologise, knowledge is good and good, reliable information about recovery is so important.
What advice was given to you in respect of repairing collegen?
That's easy to answer Chris - none!
I don't know if you have joined any of the fb closed groups for FQT victims but people have mentioned various supplements and minerals etc. These ideas generally seem to come from people in the US and I have not tried anything. I have heard that magnesium is good and the B vitamins but as for regenerating collagen, I don't think anyone has really found anything to work. Gentle exercise combined with rest is the only thing to do I think, plus time and patience, with fingers crossed that things will get better.
Plodding on
I joined a fb group but quickly left it as it scared me to death as people on there were telling me that its possible I'd never recover. I didn't need to hear that even if in their experience thats what had happened to them. I have to believe that I will eventually get back to myself. I found floxiehope a good site and through there met two people from oxford, ones a cyclist and he's back eacing now after 2 years which inspired me to keep my chin ip carry on cycling and hopefully I'll recover asap.
I've tried to keep off websitea as much as possible, however I agree theres some advice woryh taking. I too have read about all thw supplements I ahould be taking but it just feel right to me by adding more toxins into my body. If there was proof that it worked and was a known cure then I'd think about chancing it, but is it really wise to take a cocktail of tablets when my body is already trying to fight off the effects of a drug?
Just have to be brave and hope things get better and we really have no other choice do we.
Take care and I hope you all find a full recovery
Chris.
Doesn't feel right to take supplements it should say - apologies for spelling errors typing from my phone....I can spell, honest.
I agree with you Chris, about scary websites and not wanting to take in any more possible toxins, especially when there's no proof that they work. As far as I know, there is no actual cure....... Just the body healing itself.
I also like the Floxie Hope site and visit it often - a good source of information and with positive stories.
Yes, take care all.
Plodding on.........eventually we'll get there...........
Keep me updated both of you plodding on and emma. Im sure thqt in a few months more you'll both be back to your old selfs.
Chris
Don't be worrying about spelling errors Chris - as if it matters here! My iPad has a mind of its own and often changes my words, without me realising. Lol
You keep in touch too and if you find out anything new, please let us know.
Plodding on
The point I was trying to make in my post was regarding the anti-bacterial effect of the drug. Modern medicine does have its problems - even I am acutely aware of this being a practising pharmacist. Quinolones can cause tissue damage because they can penetrate well into a large range of body tissues - this also makes it useful for targeting infections in these areas. Perhaps it is high concentrations of the drug in these tissues which predisposes to damage. I do sympathise with those people who suffer adverse effects to medicines, regardless of how mild or severe. It is very difficult to predict who will suffer a side effect from a medicine and what that may be. The main message is to have this discussion with the doctor or nurse you are seeing in order to make an informed decision on what you have been prescribed.
Tarun. I appreciate that you have some knowledge of Quinolones and I don't think anyone is disputing their effectiveness in fighting some kinds of infection.
However, they don't only penetrate tissue where there is infection but also healthy tissue and the damage they have caused is frequently disproportionate to the initial infection, which very often could have been treated successfully with less aggressive antibiotics ie., those which do not have such damaging side effects; but they are not tried first. Nor is it the case that these previously healthy tissues had been exposed to a Quinolone before and adverse reactions can and often do begin after the first tablet. Quinolones are wrongly being prescribed as a first line defence and within the last couple of years, there has been a directive to doctors, not to prescribe them under these circumstances; not all prescribers are aware of this or the warnings about possible tendon damage, permanent peripheral neuropathy etc.,occurring as a direct result of the Quinolones.
There are situations also, where for various reasons, patients are unable to discuss treatment first and have to rely on the knowledge of doctors and have no choice but to put their trust in them not to cause further harm.
I did not expect to be prescribed an antibiotic which I did not need and which produced such devastating side effects, for which there is no antidote. My doctor was unaware of the possible adverse reactions and she is very sorry that she prescribed the antibiotic. She has been very supportive, athough she can offer me no solution. She says she will never prescribe Levofloxacin again.
Plodding on
I think a lot has to go into the thought process before prescribing an antibiotic. A GP may have three choices for a hypothetical patient with a chest infection for example. If the patient is allergic to number 1) and the bacteria is resistant to number 2), they may be left with no choice but to prescribe number 3), which may be a quinolone or other group. Perhaps it would not have otherwise been the first choice, but what other choice could that GP have ? As a side point quinolines have their role in patients with chronic respiratory problems such as cystic fibrosis in treating specific infections, as well as in other patients. Having read through these threads I do understand your plight and others and appreciate the stress and physical problems this could have led to. I think we as a society need to look more closely at whether a patient truly needs an antibiotic for their symptoms, whether the one selected is appropriate and ensuring patients are fully informed. With all the recent media coverage over antibiotic resistance and fewer new antibiotics being produced, it's imperative that we use the ones we have rationally and not limit our choices even further.
I absolutely agree with you Tarun and have written, (though perhaps clumsily) that there is obviously a case for using a Quinolone, when there is no other choice available. I am aware also of situations, like you describe where they are a real necessity. I have a disease which severely compromises my immune system and so I rely on antibiotics more than most and therefore appreciate the difficulties surrounding them. This subject affects me very directly.
It seems that they are being used too casually especially Quinolones, without enough thought and as you say, if we are not careful, as a society, we will run out of options with antibiotics and that's scary. However, it is not the patient who makes the decision to take an antibiotic but the doctor who prescribes it.
I must make it clear, that I do not blame my GP at all, even though I think it may have sounded otherwise in my previous post. My GP was incorrectly advised to prescribe it, by someone else.
I'm curious to know what drew you to this forum and wondering if either you, or anyone close to you has been affected by a Quinolone?
Plodding on
I personally have not been affected by a quinolone, and in the hospital trust I work at their use is very restricted for other reasons (increased risk of C.diff infections). Of the few patients I have seen in hospital require it, all have been able to tolerate 5-7 day courses. The majority have required it for kidney or urinary tract infections. The main reason for my presence on the website's forums is to provide some professional advice - I can't provide medical advice as I'm not a doctor, but I can provide pharmaceutical advice. There is a lot of tat on the internet particularly with respect to prescription medicines and these forums seem to attract a lot of the public who have questions for which they don't have answers. I have been on this website for almost a year and try and respond to various threads ranging from simple queries of drug interactions to offering advice on pain management.
Hi Tarun
I'm very glad that you haven't been affected by a Quinolone.
Of the patients treated in hospitals with FQs and who seem to be able to tolerate a short course of them, I wonder how many are followed up, who develop delayed reactions, in particular soft tissue problems, often with tendon rupture but don't associate their new problems with the FQs. I'm not expecting you to answer this though.
It's interesting to learn that you are working across the forums and are able to offer pharmaceutical advice. This must be time consuming for you, on top of your regular job in the hospital........so I'll save any questions for another time!
Plodding on
Not at all - don't mind answering any general medication related queries anyone may have. These patients don't tend to go home straight after finishing their course of antibiotics. Some may continue to stay in hospital for other reasons (e.g social). There may be an element of a delayed reaction, but it is very difficult to always prove causality between a medicine and side effect, especially one that is delayed for weeks or months. Factors such as other diseases, lifestyle and indeed other drugs have to be considered and a link between drug and effect cannot be easily established. This is why trials need to be done rather than looking at cases on an adhoc basis, because trials can account for other factors and help to rule out a coincidence.
Tarun -thanks for taking the time to listen to our point of view. As plodding on mentioned I'm pleased to hear you haven't persobally been affected. Can you offer you opinion on supplementation to repair any damage thats been done. A great deal of people suggest taking magnesium and other supplements such as gluthiane, vut c etc to repair and heal soft tissue and tendon damage. I'm personally wary about taking other rablets but do you think this is recommended and could I be pronlonging healing by not taking these?
Emma - how are you getting on now?
Chris
Apologies for this late response - been quite busy over the past few days. Chris - I have not fully looked into treatments for quinolone induced muscle/tendon damage, so I'm not certain of the place magnesium or other supplements have. I'd be interested to see and critically assess the evidence that recommends such products however. Have you looked at physiotherapy and other such non-drug options as well ?
There is a lot of good information on fluoroquinolone toxicity on http://floxiehope.com/
I've suffered from toxicity from CIPRO for almost 2 years now and the site and the administrator have been very helpful,
Cheers,
Hi wtrboy
Really sorry to hear that you have been suffering from Cipro toxicity for so long and hope you are feeling some improvement.......
Yes that is an excellent site - I know it well and would also recommend that other Floxed people visit.
Take care
Plodding on
Hi Emma,
I'm so sorry that you are going through everything that you are experiencing! Please know that there is help and support available. My site, _____, has some good resources on it. There is also a good facebook group - _____
I really hate it when pharmacists and doctors are arrogant idiots about these drugs. Fluoroquinolones cause mitochondrial dysfunction. This has been shown repeatedly in multiple peer reviewed studies. They have also been shown, repeatedly, to chelate magnesium out of cells. Do you know what happens when magnesium is depleted and mitochondria malfunction? MULTISYMPTOM CHRONIC ILLNESS.
To think, and to go as far as to say, that antibiotics only affect bacterial cells and don't affect human cells, is ASININE. Any medical professional who thinks that should have his or her license taken away.
Good luck, Emma. Please contact me through floxiehope if you need anything.
Regards,
Lisa
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