Ciprofloxacin poisoning?

Treatment and medication
1

Hi All - I was prescribed a course of Cipro and Diclofenac (NSAID - apparently not a good idea)

and after day one I had to call my GP as I had anxiety, stomach problems and shaking - of course they said can't be the Cipro keep taking it. After 5 days I couldn't go on, so agreed I would stop - then after a couple of weeks the pain hit - severe muscle cramps, pain in joints, leg pain, headaches, neck pain, and worst of all severe anxiety, some of this has cleared up but 5 months later I'm still suffering.

I noticed there haven't been any posts on here for a while - is there anything happening in the uk to make people, Doctors etc more aware of this poison, are there any known legal actions against the makers by someone in the uk?

It seems Cipro is prescribed as a first line drug for relatively minor problems when something else would be better - to be honest I would rather have put up with the original symtoms than go through this. The worrying thing is how long will it go on for - it is very difficult to function at work when you feel this way

regards

Mike

2

Hi there

Sorry to hear about your experience with ciprofloxacin. It sounds like you've had quite a severe adverse reaction to the medicine. Nausea/vomiting and diarrhoea tend to be the main side effects to watch for although muscle and joint pain can occur rarely. You are right in that the combination with diclofenac should ideally be avoid. In my experience I have not come across many patients in the community being prescribed this by GP's - there is a lot of bad publicity around the drug particularly surrounding the risk of C.diff infections in hospital, so I hardly ever see it.

Tarun (hospital pharmacist)

3

Hi Mike

First I'd like to say there are not many people on any UK forums complainting about cipro, so maybe we are the real unlucky lab rats. I have been thro hell since April 2012 and still am. I have been house bound unable to walk for 80% of the 16months. I have 20 major problems, yet I was a fit cyclist/walker.

I was tricked into cipro because no discussion with the medic. When I spoke to 3 seperate Pharmacists, none had anything to say to help me except 'see your doctor' and 'dont read forums. Does anyone have a clue? I doubt it.

Regards

John

4

Hi Tarun/John

Thanks for your replies, I agree, from the research I've done, mostly it seems people in the US posting stuff about Cipro - which is interesting since from what I've read, they are more careful with it over there, in fact the FDA wanted to ban Flourine based drugs and some companies voluntarily stopped making them but Bayer who make Cipro refused and I understand the legal process to get it stopped could take years!!

Been to my GP this morning and latest diagnosis is Fibromyalgia - but guess what it appears that can be triggered by Cipro - anyway now awaiting appointment with some sort of muscle specialist.

John, like you I was 2 x week at the Gym and 50 mile bike rides at the weekend, now all I can do is a very gentle Gym session and even that is very painful the next day.

As a matter of interest, how long did you take it for?

All the best

Mike

5

mike

May I begin this by redacting 'Tricked into Cipro' I chose the worng words. I should have said 'I blithely took Cipro thinking it was a type of penicillin and put my faith in the young doctor'. He said to me we'll hit it hard, well it certainly did that. I still think its difficult to beleive the damage that cipro can cause. Its no wonder Doctors disbelive their patients, no one informed would deliberately prescribe drugs to ruin people's lives like this. I think I am probably disabled for life. I took 14(750mg) tablets in one weekike could i,.

Mike could I ask you what cipro you were prescribed and what specific effects are you enduring now. How do your family/friends feel about your situation.

It is obvious you have aquired much knowledge on Bayer and cipro, but have you come across the stories in the Daily Mail and New York Times

John

6

Hi John

Well like you I took the Doc's advice and took the tablets, I took 12 x 500mg over 6 days before I couldn't stand the side effects anymore and called the consultants secretary and told them I wasn't taking them anymore (it was for a suspected Urinary/prostate infection)

The initial side effects while I was taking the tablets were mainly severe anxiety, but also they seriously upset my stomach with bad stomach pains, I was also taking Diclofenac at the same time, and from what I've read you should not take NSAID's and Cipro at the same time as it makes the side effects worse (if that were possible)

The bad bit kicked in about 2 weeks after I stopped taking them, with really bad muscle cramps in my upper body, chest. shoulders etc along with anxiety.

The anxiety got to a point where I couldn't walk out the front door to go to work - I just froze - thats a hard one to explain to someone who hasn't experienced it. My GP put me on Lorazepam which really helped the muscle pain and anxiety - for me it worked like a dream but it's really addictive so I'm trying to come off it and change to pregabalin which is less adictive but it doesn't seem to be doing much and I still need a small 0.5 mg dose of Lorazepam to keep things under control.

The main symptoms 5 months on are pretty bad headaches all the time, they mainly feel like tension in the head but sometimes really sharp pains, severe neck and back pain and muscle cramps, pains in most joints of legs and arms.

I've kept the details from most of the family and only my partner really knows, she is very supportive but I've had some really bad depression at times and understandably she gets very frustrated because of my negative and angry behaviour.

I think I;ve been lucky comparatively, from what you have experienced, although I'm constantly worried things will take a turn for the worse because of what I'v read about symptoms appearing for a long time afterwards.

Sorry, this is turning into a very long post, but yes I found the daily mail story and I actually contacted the journalist who did the piece and had a chat with her. I'm not sure I've seen the New York Times one though.

Have you tried any of the suggested "detox" methods that are around like taking Iodine and other supplements and some other ones - I think Boron or Borax is a possible as well but I really don't know how safe or effective they might be.

cheers

Mike

7

Hi Mike

Sorry for the delay since your last post, its due to my friend Cipro who I met 16 months ago. I had to,attempt an essential repair to my conservatory roof (my haven) which threatens to collapse leaving me completley housebound. I spent 2 hours (i.e 15 mins on 15 mins off) which left me in a wretched state much worse than I anticipated.

It occurs to me that the knock on effects are extremely life changing in so many ways, not just pain and suffering. These do not get recorded in medical notes.

Re your last post

1 I too had a suspect unirary/prostrate infection and a suspect diagnosis, (ended up 50 times worse) and a very uncertain future .

2 I have done nothing regarding De-Toxing, I was waiting to see a GP again, but 13 months have now elapsed. However I am going to try Q10 this week.

3 I am intrigued to talk to you about the mail story and other things.

Finally would you be willing to contact me if I set up a seperate emaill address to discuss some points in more detail.

John

8

Hi John

No problem about the delay, hope you got the roof sorted ok, I know what you mean, sitting in the conservatory sort of feels like outside and I like it even when its raining hard, I often sit in our conservatory when I get home from work and read of just do nothing for a while.

I'd be happy to talk further about the mail story, but as you suggest, probably best done via email.

Will be interested to hear how the Q10 goes, didn't know what it was - but just googled it!

I'm trying someting called Muscleze from our local Revital store, the guy in there was very knowlegeable and seemed to know something about Fibromyalgia and it's symptoms, which are much the same as the side effects of Cipro. It contains lots of Viatmin B (all types) magnesium which apparently is very good and calcium and much more. I'm also taking Vitamin C supplements and a probiotic for the gut bacteria

(of course there is a theory that Fibromyalgia could in some cases be CAUSED by drugs like Cipro - which is why it is getting more prevalent and doesn't have any known cure)

Only been taking it for a couple of days so to early to say if it helps at all

Let me know the email and we can communicate further

All the best

Mike

9

Mike

I have sent you a reply with a disposable email address but it has been stopped and is awaiting apporaval

John

10

Mike

I am new to e-mailing so I did not realise that the rules stop exchange of addresses etc. Is it ok to go back to where we left off ?

If you agree, I would love to hear what you learned from 'taking antibicotics ruptured my tendon'. Did you get any impression of how many people suffer from cipro in t he uk each year/.

Hope to hear from you

John

11

Hi John

I didn't realise it would stop exchange of emails either, how strange, anyway, happy to continue the discussion on here

When I first started getting the strange symtoms, I started googling and when I found all the other people with similar stories I was getting very angry, and then having discovered the Daily Mail article during my research, I think I googled the journalists name and found their website and from there dropped and email and much to my surprise they phoned back.

We had quite a long chat, but I don;t remember how many people had been in touch, but what was interesting was how many didn't want to be identified. Nothing specific came out of the conversation and at the time it felt good just to have a vent at someone who understood the problem.

The problem is I feel very torn between wanting to do more about the situation, but I don't know what direction that would take, and not wanting to because it's a massive step to start on that track.

I understand from what I've read that most of the legal actions against the manufacturers have failed anyway. I'm not even sure that would be the way to go, because it obviously works for many people and I'm sure saves many lives

My main issue is with the consultant that prescribed them for what was a relatively minor issue, and to be honest I would rather have put up with if only I'd know what would happen.

One interesting development though, went to see this rheumatologist last week, and he was the first doc I've seen who acknowledged the possible effects of Cipro - his words when I mentioned that I'd been on them were "Oh, Cipro that's an interesting one", turns out he had been prescribed them, but being in the business, he'd read about the effects and decided not to take them, but he admited that they can certainly mess with your head.- Thats a start because no one else believes that or at least they are not owning up.

All the best

Mike

12

Hi There

I am from UK and living in Scotland. I was prescribed Cipro at the end of last year for 3 weeks (twice a day)and then again for a further 6 weeks in March / April this year. I was prescribed this drug for suspected prostatitus however this drugs appeas to have solved nothing and at the time of taking them I had a constant pain in my upper abdominal pain (where it felt like there was a war going on inside!!) and constipation,. Nonetheless I followed the doctors advice and finished both prescribed doses, however, months later the constipation has disappeared but I still have a constant adbominal pain and gas with bloating in the upper abdomen radiating through to my back.

I have had numerous scans, tests and exploratory procedures carried out but none of the doctors can provide any splution or assistance. My gaestroenterologist last week basically said there is nothing further he can do for me and suggested i revert back to my GP.

Not sure if anyone else has experienced anything similar but thought I d share this just in case.....

13

Hi Mike

I'm so glad your back because this is the only conversation I've had where someone has understood. I have spoken to people "employed to help" but either they did not believe or did not understand or did not want to discuss it. I wonder if its the case of "don't rock the boat" .

I checked on the cipro mail story author and found her articles very revealing, I'll cover that in the future.

But now can I ask you, was your treatment discussed with you and the doctor, were you given a choice of penicillin or otherwise. Was it the case of "no decision about me without me", because this is the critical time, deciding to gamble with powerful drugs.

When you phoned to say you where stopping after one day, did you get a reasonable explanation. Then after five days when you stopped completley, did you see the medic, did he explain, apologise, or suggest what to do.

I know you said you would rather put up with the original problem but now how do you feel about it overall.

In my case he said " we hit it hard" and I thought I was getting penicillin he gave no warning, no discussion. When my wife spotted "tendons" in the tiny print, he said "it should be OK". When I saw him 2 months later he appeared shocked and from what I recollect he said "I'm so sorry"

Could these serious problems have been stopped at an early stage, ie information and discussion. Surely anyone damaged should be given prime attention just as an accident victim would get in A&E.

In 12 months I've only seen one doctor. The 10 minutes with him was abysmal and I'm now housebound, should we just put up and shut up.

I should not forget that the majority benefit. I would probalbly be praising cipro if it had cured me.

John

14

My father has been 'floxed' (as the Americans have appropriately labelled this) some 18 months ago following a prescription of Ciprofloxacin for a urine infection. Within days he suffered tendonitis in his ankles and has since had, what he describes as 'brain fog', which is so bad that he is totally dependent on my mother, who has to supervise all of his daily activities as he is now totally unsafe. He has undergone tests for brain tumours and dementia including CT and MRI brain and many many many blood tests. However, all have proved negative and Cipro has been the only common denominator in all of his ailments. before Cipro he was an active, level headed, logical thinking man. So, after seeing my father experiencing the side effects of Cipro, I have been on a mission and on many many sites trying to find something which will help him. So far, unfortunately I have come to a dead end and have read heart-breaking accounts of how peoples lives have been totally ruined by this drug. and it would appear that the only advice out there is on detoxing etc etc which appears to work for some but not others. For my poor Dad is is too late, the damage is done but I have joined many groups who are fighting fervently to get this recognised and eventually the banning of this poison. I though you guys might like a couple of links which I have come across on my searches plus a petition by a reputable company which you may like to sign. Small steps I know but it might help to prevent this from happening to your children or someone very close to you. And spread the word to all you know about how Cipro is ruining lives. I wish you well with your personal recoveries. Deborah

15

Hi John/Amnesiac101

To Amnesiac101 - thanks for your comments, when I was actually taking the Cipro back in February the stomach pains were one of the reasons I stopped taking them after 6 days, that and the Anxiety they triggered. I still have various pains in the stomach but I don't really know whether thats due to the Cipro or the pregabalin I'm now on to try and alleviate the other problems Cipro has caused, such as severe muscle pain in most of the body etc - stomach pain and wind/feeling bloated are side effects of pregabalin as well so it's hard to know.

John, likewise, whilst it would be better if neither of us were suffering with this, it is good to talk with people who understand what you are going through, there are few enough of them about when you need them.

The Doc did discuss with me the treatment, but didn't offer any alternatives to the Cipro (I've learned that it is very commonly prescribed for our kind of problem in the uk). Unfortunatley, I just went with what was given and I didn't even read the side effects insert until after the event - and in any case you don't know what will happen, In my case after I stopped taking them I was actually ok for about 2 weeks then the problems started.

On the first day of taking them, I had really bad anxiety attack and uncontrollable shaking - it was all really a bit strange and as mentioned above, bad stomach pains. I rang my GP surgery, but couldn't talk to my usual Doc but the one I spoke to dismissed what was happening and said just keep taking them, I also rang NHS direct or whatever it is called these days and they said the same. So I kept on for 6 days, after which point I made my own mind up I was stopping and rang the Doc to say so.

I haven't been back to see the original Doc that prescribed the Cipro, as fortunately the original symtoms were cleared by the 6 days on Cipro - so you could say it was a success from that point of view.

I don't really know the answer, it seems to me, there needs to be some sort of awareness campaign so that people prescribing these things are at least aware that people may suffer these side effects and own up when they occur and are recognised as such.

Anyway, another long post from me, better go and do some work!!

All the best

Mike

16

Mike

I agree wholeheartedley with you that an awareness campaign AH should be implemeted to try JB reduce the number of people suffering. Education EC is the key to many things. If the medics are aware of the potential effects, correct dosage and conducts an honest two way discussion. Then in the EJ event of a patient suffering abysmally, he/she would not hold it against the medic. If the problem iiJ is flagged up the medic could consult the standby procedure such as advice on rest, supplements and other matters, surely this is better then leaving people damaged high and dry. A is zero, bee is one, see is two etc.

You wrote that you suffered with bad headaches, so do I. Mine have lasted 1year 4 months, virtually every day affecting concentration and memory. A few days ago I was listening to the radio. Doctors were discussing " chemo brain" (check on computer) which sounds pretty much the same as cipro's "cranial pressure".

Speak to you soon

John

17

Hi John

Yes the headaches are still there, had them for about 4 months, they are not like normal headaches but they feel like pressure in the head, difficult to describe, I guess like there is a band round your head and it's being tightened. I also get really bad pressure pains across the front of my head and face, especially just after I wake up, it feels like bad sinus pain.

That Chemo brain thing is interesting, in a similar vien, if you look up fluoride poisoning which is effectively what the Cipro does to you, I belive, it also causes those sorts of symptoms, I definitely feel like I don't concentrate or work as well as I did before all this happened.

We've been doing some decorating, but I find apart from all the muscle aches, it's really hard to grip things like screwdrivers or paint brushes because I guess it's the tendons in the thumb joint become really painful, my partner has ended up doing most of the work which I find hard when you are used to doing this stuff.

I've decided to try taking extra Iodine now as that is supposed to help, so I got some powdered Kelp from the health food store and started on that Saturday, to early to say if it does anything but it's a natural product and as long as you don't go mad it should be ok.

Take care

Mike

18

Hi all,

I have removed the email address and links to petitions in this discussion as we do not publish these. If users wish to exchange this type of information or chat outside of the forums then please use the private message service.

Regards,

Alan

Emis Moderator

19

Hi Deborah

Thanks for your post and certainly agree about spreading the word, since the system does not allow email addresses and links, would you be kind enough to send me a private message with the information, that would be much appreciated.

Like you, I've done huge amounts of research and emailed various organisations, but often without reply. Most Doctor's won't even acknowledge that Cipro could be the cause despite being perfectly healthy before taking it and having multiple problems subsequently.

Best wishes to you and your Father and hoping things improve

All the best

Mike

20

Hi Deborah

Thank you for logging on to the forum. I am dismayed but not surprised concerning your Dad's plight. You have my backing and I am prepared to spread the word any way I can

kind regards

John