Ciprofloxacin poisoning?
Posted , 76 users are following.
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
7 likes, 266 replies
Tarun
Posted
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)
john616
Posted
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
nabur john616
Posted
Ditto, John...2 1/2 years now.
You're right, no one has a clue.
mike_7
Posted
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
libralady13 mike_7
Posted
Hello Mike I was interested that your GP thinks you have Fibromyalgia and I too read that it can be triggered by Cipro. I am a female aged 71 I suffer from osteo arthritis in several joints among other things. I recently saw a consultant rheumatologist because my gp said I had several of the trigger points for Fibromyalgia. The consultant agreed with this and I have been given a possible diagnosis of Mild fibromyalgia against a background of arthritis. I now await xray and blood results to confirm it or not. Now in November last year I was given a 7 day course of ciprofloxacin for a simple urinary infection. I did not want to take it as I had heard the stories about it plus my husband took it some years a go after a surgical procedure and had a reaction. He had to stop and was given antihistamines as he was red all over and felt like he would explode. He too now has joint problems.I saw the doctor again not my usual GP and told him I was not happy he sort of persuaded me it was safe. At this point I had only taken 1 tablet and felt spaced out. It was put down to anxiety which I suffer from so I finished the course. I wish I had never taken them and my own GP has put it down on my record as a reaction so will never take this groups of antibiotics again unless it is a matter of life and death and there is nothing else. For me it is hard to know whether the increased pain this year is just a worsening of arthritis or is cipro playing a part. All I can say is that arthritis seems worse pain more widspread. Time will tell. Can I say how sorry I am that you have been and are still suffering so much. I hope you will continue to improve and eventually make a good recovery.
miriam65408 libralady13
Posted
Hi Libralady, we've messaged before on the fibro forum but I saw you here and thought I'd say hello again. There isn't much activity on this thread, Mike had stopped posting before I became aware of it (he started it 5 years ago!) although I do know John 616 and some of the other posters.
One of the other fluoroquinolone threads here was started by the Moderator and he gives some useful addresses in it, it's at
https://patient.info/forums/discuss/fluoroquinolone-toxicity-syndrome-427305
I perhaps mentioned before that the EMA (European Medicine Agency) reviewed the serious side effects of fluoroquinolones (Cipro and other names) and issued new restrictions in March 2019. These restrictions were known in November last year when you were prescribed Cipro for a "simple" urinary infection but they weren't legally binding until March. This is relevant to you as your doctor should have known that Cipro would soon no longer be used for simple UTIs and that there were going to be extra warnings for their use in the over 60s especially if muscle or tendon problems are already an issue.
I urge everyone who has been affected by fluoroquinolones to report their adverse reactions to the MHRA via their Yellow Card system. It's easy to do on line, just look for MHRA Yellow Card and the link will appear. If people don't report no one will know how bad it is - at the moment Doctors are told it can be severe but only "very rarely". I think the number of people who have posted about it here shows it's not very rare, and then there are those with a Fibro diagnosis who don't even know their pain is because of the Cipro!
If Mike 7 ever looks in, I hope he'll be pleased to see we're still trying to raise awareness.
gillian37107 libralady13
Posted
six years down the line for my husband and every joint in his fingers is like bone touching bone
any suggestions
libralady13 gillian37107
Posted
Gillian I am so sorry about your husband but I cannot help you. Miriam who posts on this forum maybe able to advise you as she know a lot about this subject. I assume your husband took this antibiotic 6 years ago and that is why you are asking. Hope you can get him some help.
miriam65408 gillian37107
Posted
Hi Gillian, I know you've been here as long as I have and I know you know as much about it as I do. I hear your frustration and desperation, so many people I have come across are just waiting to turn a corner and start on the road to recovery yet that corner keeps slipping further away.
Does he take collagen in some form? Tablets - usually 300mg - can be helpful. Plus soaking the hands in Epsom salts (the magnesium helps) - or even adding the salts to a bath for a good soak. Glucosamine with chondroitin tablets are said to be helpful by some people.
If I come across anything else I'll let you know.
Best wishes
gillian37107 miriam65408
Posted
HI MIRIAM
THANKS FOR THE REPLY I WILL TRY MORE OF THE ABOVE AND UPDATE YOU IF THERE IS ANY CHANGE
THANK YOU
Carlina miriam65408
Posted
Yes i have been diagnosed with fibro.
But I also think some of my symptoms responded well to Vit B12.
However, my increased anxiety could be attributable to the traumatic result of surgical infection or the cipro that was used to treat it. I was on it in high dosages for 2.5 years. I have ongoing issues with cartilage, tendons and ligaments prone to stress tears and lesions. I have hurt my rib four times, most recently my rib was hurt just from lying face down for an MRI. It feels like a bruised rib and fir days a can't breathe or move without feeling winded by rib pain. I have lot of other issues that I suspect relate, including hypersensitivity to touch pressure.
I don't think I had a choice at the time. life n death possibly.
But I do think this drug is scary.
If you read read up on B12 deficiency... see if any symptoms correlates with your cipro symptoms. I'd be interested to know if its just me.
miriam65408 Carlina
Posted
Hi Carlina, Thanks for responding.
Some people tell me they took many doses of Cipro or one of the other fluoroquinolones (FQs) while others say their life was ruined by just one tablet. It's believed that the different amounts people can tolerate depends on their genes and the state of their mitochondria. To have taken high doses of Cipro for 2.5 years will certainly have made some impact on your body. I personally believe that the FQs should only be given in a life or death scenario, yet they're still handed out all too lightly, despite new restrictions from both Europe and the FDA.
I think your rib pain may be from the intercostal muscle (between your ribs) being degenerated by the Cipro. One of its main effects is to breakdown collagen - which is a major component of muscle, tendon, nerve and blood vessel linings, skin, you name it! This would explain all of your ongoing issues (and why so many people end up with a Fibro diagnosis) while tendon tears are the most well known side effect.It also crosses the blood brain barrier and causes various disturbances in the brain varying from depression and anxiety through to hallucinations and psychosis.
It causes many deficiencies, not just B12, although a lot of sufferers do take this as a supplement. FQs actively chelate (steal) your essential minerals (magnesium, iron etc) and also create oxidative stress, so in reality many different supplements should help. The damage is often so severe, however, that it takes many years to fully recover with or without supplements. There is basically no cure except rest and recovery - much like fibromyalgia - while the fatigue from the damaged cells mimics CFS/ME (another misdiagnosis).
Take care, you sound like you're managing well. Avoid steroids and NSAIDs as these can cause flares of the symptoms. Best wishes.
john616
Posted
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
mike_7
Posted
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
john616
Posted
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