I need help - just left hospital with deadly drug

[Eeyore]

@starlily88 @CFS_for_19_years

Yes, that looks right - R would be resistant, S sensitive, and I (probably) intermediate.

If it's sensitive to nitrofurantoin, that can be given orally, so you could ask for a prescription for it from your doctor to use instead of the cipro. It's a macrolide antibiotic - same family as erythromycin, azithromycin, clarithromycin, etc. It's also known as macrobid, and is commonly used in UTI's.

Levaquin is also a fluoroquinolone like cipro.

the others are not oral meds as far as I know. Gent is definitely not available orally, nor is cefepime (a cephalosporin). The first one you list is short for piperacillin/tazobactam, and that is iv only (that is one med in that they are given together, the piperacillin is the antibiotic, the tazobactam is used to circumvent bacterial resistance - it's an inhibitor of beta-lactamases - similar to augmentin, which is amoxicillin + clavulinic acid).

So probably your only non-fluoroquinolone oral option there would be the nitrofurantoin.

 

[Tunguska]

Why does my internist not see the FDA black box on this? Even though they all knew I take Zanaflex for muscle spasms no one warned me of this - so I took Zanaflex with Cipro Saturday morning - which makes the Zanaflex 14 times more potent! I am so very unhappy having learned that Cipro is ONLY for severe cases and should not be used for a UTI or sinus infection - yet so many now are permanently damaged.

I am so very angry with my Internist who has no idea of any side effects, and denies their wide occurence.

This was my exact experience with the personnel. Well, the beginning of it. The result: I'm ruined for life.

Insist for a change of drugs if any such possibility exists *. If somehow you end up forced to take cipro, take NAC (especially), CoQ10, vitamin E, and active B vitamins with it in good doses, along with magnesium glycinate but away from the antibiotic (same time affects antibiotic absorption). [NAC, CoQ10, Vit E were shown to help in studies; theoretically you might add Vit C and ALA to that to complete them; Mg is a popular treatment for quinolones; B vitamins anecdotally and theoretically likely to help, unless you know you react badly to them]

* Keep this in mind: I was literally lied to by a doctor who told me no alternative existed and it was my only choice - and I was insisting. Awhile after a different doctor switched the prescription but it was too late. You need to insist.

 

[Eeyore]

Fluoroquinolones like cipro are widely prescribed now and considered first line treatment for many infections, and doctors do not think of them as risky drugs. They use them routinely and probably have never seen a side effect (or, if they have, they haven't made the connection that the side effect was related to the drug).

Choices for UTI's are also more limited. The drug has to be passed intact into the bladder relatively rapidly (or an intact metabolite has to be). Drugs like zithro (which ME patients tend to do really well on, anecdotally speaking) concentrate in white blood cells. Half life is very long and they don't really work well for UTI's. Generally, for UTI's, most docs will prescribe nitrofurantoin, cipro, or bactrim (trimethoprim/sulfamethoxazole). All have some side effects.

Many black box warnings are not taken seriously by docs because they don't see it in clinical practice or they believe the evidence is weak, or just that the odds are really low. For example, topical calcineurin inhibitors carry a black box lymphoma warning - but docs prescribe them like candy and really don't worry about it as they don't think the FDA was right or that the science really supports it. I am not so sure it's ignorance, but rather that docs try to weigh risks and benefits for the patients. Most patients are not like ME patients - they want to go to the doc and get a prescription. They don't care how it works or why, and they trust the doc to manage risks. Docs are used to this type of doc/pt relationship, and are comfortable with it. As ME patients, our experiences with docs are SO different. For us, it's generally expected that the doc will not understand our problems, and even with a lot of time and money spent, will not be able to figure them out. We expect they will dismiss our concerns as unimportant, crazy, illogical, or even made up, possibly for drug seeking. We don't expect to be treated with respect or compassion. It's very sad that it has come to this, but that's just how it is for us.

I guess the good news is that when we go in for something more "normal" we can expect to be treated much better than we are normally used to, and we can expect docs to care, show compassion, and not assume we are full of crap...

I don't think anyone but another ME patient can understand what I just wrote. Any ME patient, however, will just get it immediately. That's a reason we all come here. No one else gets it - even when they try to. Even my family, which has always been 100% supportive, does not really understand how much of our burden is created by poor treatment by the medical community. We didn't ask to get sick - no one does - yet we, and we alone among patients, are treated this way.

 

[Tunguska]

Many black box warnings are not taken seriously by docs

Most doctors I consulted were not aware the black box warning existed, period. The first doctor I ran into who was aware was only up to date on 1/2 of the black box warnings for this particular drug. The staff were nearly all clueless except a total of two, out of countless. They are not informed.

 

[Kati]

Fluoroquinolones like cipro are widely prescribed now and considered first line treatment for many infections, and doctors do not think of them as risky drugs. They use them routinely and probably have never seen a side effect (or, if they have, they haven't made the connection that the side effect was related to the drug).

Choices for UTI's are also more limited. The drug has to be passed intact into the bladder relatively rapidly (or an intact metabolite has to be). Drugs like zithro (which ME patients tend to do really well on, anecdotally speaking) concentrate in white blood cells. Half life is very long and they don't really work well for UTI's. Generally, for UTI's, most docs will prescribe nitrofurantoin, cipro, or bactrim (trimethoprim/sulfamethoxazole). All have some side effects.

Many black box warnings are not taken seriously by docs because they don't see it in clinical practice or they believe the evidence is weak, or just that the odds are really low. For example, topical calcineurin inhibitors carry a black box lymphoma warning - but docs prescribe them like candy and really don't worry about it as they don't think the FDA was right or that the science really supports it. I am not so sure it's ignorance, but rather that docs try to weigh risks and benefits for the patients. Most patients are not like ME patients - they want to go to the doc and get a prescription. They don't care how it works or why, and they trust the doc to manage risks. Docs are used to this type of doc/pt relationship, and are comfortable with it. As ME patients, our experiences with docs are SO different. For us, it's generally expected that the doc will not understand our problems, and even with a lot of time and money spent, will not be able to figure them out. We expect they will dismiss our concerns as unimportant, crazy, illogical, or even made up, possibly for drug seeking. We don't expect to be treated with respect or compassion. It's very sad that it has come to this, but that's just how it is for us.

I guess the good news is that when we go in for something more "normal" we can expect to be treated much better than we are normally used to, and we can expect docs to care, show compassion, and not assume we are full of crap...

I don't think anyone but another ME patient can understand what I just wrote. Any ME patient, however, will just get it immediately. That's a reason we all come here. No one else gets it - even when they try to. Even my family, which has always been 100% supportive, does not really understand how much of our burden is created by poor treatment by the medical community. We didn't ask to get sick - no one does - yet we, and we alone among patients, are treated this way.

I agree @Eeyore

UTi, pyelonephritis and bacterial infections are very much known and physicians are good at this.

Cipro is a well known antibiotic. It works well. Adverse events are rare. Taken for a full course as recommended by the doctor, chances to resolve this infections are good. Stopping the course of treatment and 'waiting it out' is like playing russian roulette.

This said, I am not pressuring anybody to do one thing or another, however I would like to tell members of the forums to be cautious about the advice they are giving to other patients, which medical history we know very little (and it would not be appropriate to decide what the patient should do). The decision remains with the patient hopefully under the guidance of a physicians knowledgeable with these drugs.

Best to all.

 

[Tunguska]

under the guidance of a physicians knowledgeable with these drugs.

Yeah, that's the catch. Eeyore wrote "I am not so sure it's ignorance" but I know for a fact with this drug, where I live, it most definitely was, make no mistake.

All I wish is I'd known this stuff. Anything I write is suggestions to be evaluated to your own personal situation. I just like to get to the point.

(I also object to parts of the rest of your post, but I don't care to get into it)

 

[Gingergrrl]

Pretty sure @Gingergrrl had a terrible experience with this class of drugs. I would ask for an alternative.

Andy is correct and I had a horrible experience with Levaquin which is in the same class as Cipro and has similar (if not identical) FDA BlackBox Warnings. I had a systemic neurotoxic reaction to Levaquin after my 7th pill which led to being hospitalized for one night and it also injured the triceps tendon in my right arm (and I am right handed.)

I was in absolute perfect health at age 39 when I took it and it was the beginning of a downward spiral. Two years later I got a severe case of mono and then another infection which led to ME/CFS so I do not blame Levaquin for my current condition but it definitely weakened my body and set the stage. I have not a shread of doubt that it caused me mitochondrial damage that has never recovered.

It now has five black box warnings: 1) tendon damage and tendon rupture 2) Mitochondrial damage 3) Severe neuropsychiatric events such as psychosis in people with no prior history 4) permanent peripheral neuropathy and 5) Can cause death in people with Myasthenia Gravis.

Obviously I have strong feelings after what happened to me and I had to do six mos of physical therapy to re-gain the use of my right arm. I was given free samples by my ENT without warning or informed consent. I agree that anyone can choose to take this med but they should be informed of all the potential risks and benefits. It can damage every system of the body including cardiac damage and retinal detachment in the eye.

In my own case, I am currently so ill that I would choose death over taking another FQ antibiotic but not everyone would feel as strongly as me. Just my two cents.

 

[Eeyore]

@Gingergrrl -

I don't think anyone is saying she should just shut up and take the cipro.

What we're saying is more that if she was just hospitalized and getting IV gent (which has a much scarier safety record than cipro in general anyways), rather than just stopping her antibiotics, she should call her doc, express her concerns, and get a prescription for an alternative antibiotic. Based on the info on this thread it looked like nitrofurantoin would be effective - and that is not a fluoroquinolone (it's a macrolide like azithromycin, clarithromycin, or erythromycin) - so it's side effect profile would be completely different (it's chemically unrelated). Either that, or another effective antibiotic, could easily be prescribed by her treating physician, or even her PCP if different, which would allow her to avoid the cipro which worries her and yet make sure the dangerous infection that landed her in the hospital is also addressed.

Stopping antibiotics against medical advice is always risky. People generally feel better long before it's ok to come off them. I think there is a middle path here though that works out for her. I'm not sure nitrofurantoin is the ideal drug - that's for her to decide with her doctor who understands her medical condition and the tests on antibiotic sensitivity, etc. - but cipro is not the only drug that she can take. We aren't talking about a super resistant bug that responds only to 1 super expensive and rare antibiotic. There are other options.

I do believe that cipro is not really the safest antibiotic and when I was prescribed it once, I asked the doc for something else, and got something else that was effective. I would take it if I had to, but I think there are safer options available in this case and in most cases. I wouldn't just stop taking antibiotics and hope for the best...

 

[Gingergrrl]

@Eeyore I totally agree and am not advising her to take or not take the Cipro. I just promised myself that after what happened to me, I would spread the information (especially to anyone who was asking for it) and then they can discuss it with their doctor and ask for an alternative antibiotic if appropriate. I think we are actually on the same page and in agreement.

 

[msf]

Hi Starlily,

A lot of what I was going to say was covered by other people, so I will say that I was also scared off taking Cipro when I first became ill. It turned out that I had a Yersinia infection, and the Cipro would have been the best bet by far to get rid of the infection. I have since taken 3 weeks of Moxifloxacin, without side effects apart diarrhea towards the end of the course, but unfortunately 3 weeks after being ill for 6 months isn't as effective as 1 week after being ill for a few days. I would also add that quinolone poisoning sounds awful, but then ME isn't much fun either (I couldn't tell if you have had ME for a while or you think you are starting to develop it), and if I was given the chance again I would definitely take the Cipro.

 

[Tunguska]

In my own case, I am currently so ill that I would choose death over taking another FQ antibiotic but not everyone would feel as strongly as me. Just my two cents.

Sorry to hear. I would nearly say the same. An FQ alone, I would rather kill myself with a peaceful exit method instead. However there was some research that showed NAC and friends can prevent some of the damage from cipro if co-administered, so I would possibly try that. Learned too late the first time.

I have to add, the official warning that gets repeated is for "tendon" damage and "tendon rupture" and tends to be downplayed since it's assumed tendons can heal... but the actual damage done by FQs is to many forms of collagen/cartilage/ligaments, so it will damage joints and cartilage, which basically do not regenerate. That's basically my story, cipro worsened CFS-like-related issues seriously, but entirely caused all my skeletal problems, which I'm now stuck with apparently forever.

Unlike msf and I, starlily has an advantage having a positive culture. That takes some weight off your choices.

 

[msf]

That's a good point Tunguska, Starlily can weigh up the pros and cons of each treatment, whereas we just had to guess.

 

[Valentijn]

I agree with what others have said - there are other antibiotics which should be just as effective. Call your doctor, let him know about previous problems and present anxiety regarding the drug, and ask for an alternative.

It's important to take the antibiotics to deal with the infection, but it's also important to avoid damaging yourself with a class of antibiotics you react badly to. So your doctor shouldn't have a problem with making a substitution, and if he does have a problem with it then he's a malignant turd and you need a different doctor anyhow

I don't think any doctor worth seeing would object to making the switch, even if he personally believes that there is no problem beyond your anxiety regarding the med. It does no harm to make the switch, and at the very least it would help you to avoid unnecessary worry, and would ensure that you take the medication.

 

[South]

My internist yells at me if I tell him or give him anything from the internet

So don't tell him you read it on the internet. Instead, photocopy the page from the Physician's Desk Reference manual, available at any large local library, on this Rx and its side effects. Bring the photocopy in and tell him where you got it.

Dumbass doctors don't deserve to be paid for the nonsense they try to tell people.

 

[starlily88]

[

I'm a retired medical technologist and this is my interpretation of what R, I and S stand for:

R = Resistant: the bacteria that is making you sick is Resistant to the antibiotic, i.e., that antibiotic would be ineffective in treating you
I = Intermediate: the bacteria is somewhat affected by the antibiotic, but not very much. It's only a good choice if there aren't enough antibiotics in the Sensitive category, or there is a problem with taking an antibiotic from the Sensitive category.
S = Sensitive: the bacteria is Sensitive to the antibiotic, i.e., the antibiotic can kill it

Thank you so much for telling me what R resistant, I intermediate, and S sensitive means. I really appreciate your help in this -

 

[starlily88]

Andy is correct and I had a horrible experience with Levaquin which is in the same class as Cipro and has similar (if not identical) FDA BlackBox Warnings. I had a systemic neurotoxic reaction to Levaquin after my 7th pill which led to being hospitalized for one night and it also injured the triceps tendon in my right arm (and I am right handed.)

I was in absolute perfect health at age 39 when I took it and it was the beginning of a downward spiral. Two years later I got a severe case of mono and then another infection which led to ME/CFS so I do not blame Levaquin for my current condition but it definitely weakened my body and set the stage. I have not a shread of doubt that it caused me mitochondrial damage that has never recovered.

It now has five black box warnings: 1) tendon damage and tendon rupture 2) Mitochondrial damage 3) Severe neuropsychiatric events such as psychosis in people with no prior history 4) permanent peripheral neuropathy and 5) Can cause death in people with Myasthenia Gravis.

Obviously I have strong feelings after what happened to me and I had to do six mos of physical therapy to re-gain the use of my right arm. I was given free samples by my ENT without warning or informed consent. I agree that anyone can choose to take this med but they should be informed of all the potential risks and benefits. It can damage every system of the body including cardiac damage and retinal detachment in the eye.

In my own case, I am currently so ill that I would choose death over taking another FQ antibiotic but not everyone would feel as strongly as me. Just my two cents.

Once again thanks so very much Gingergrrl for your invaluable post. Everything you have said is so correct. Apparently there were a few other drugs in this category that the FDA took off the market for good. Now they have black boxed Cipro/Levaquin.

Yes, the tendon damage is well documented. I just took my 2nd dose of Cipro on Saturday and I now have terrible tendonitis damage on my left hand (back part from baby finger down to my wrist).

Ginger - these drugs or at least the printouts I got from the hospital's Walgreen's warned that it causes death in any healthy person even after one dose! Yes, it has terrible CNS effects like hallucinations, etc. It ruptures the Achilles heel permanently. It also warns that damage is seen months after taking 5 days of Levaquin/Cipro.

Quoting from the Walgreen's printout - Cipro can cause serious side effects which could result in death - this is listed as the most important information you have to know. Then Tendon rupture or swelling of the Tendon. This happens in people of all ages, and people with no risk factors at all. Who should not take Cipro? Anyone taking Zanaflex which I am taking - which my Internist knows and the hospital knew.

Thanks so much

 

[starlily88]

So don't tell him you read it on the internet. Instead, photocopy the page from the Physician's Desk Reference manual, available at any large local library, on this Rx and its side effects. Bring the photocopy in and tell him where you got it.

Dumbass doctors don't deserve to be paid for the nonsense they try to tell people.

Thanks for your suggestion - I can also use what the hospital gave me because it was given to me to read!
Thanks for your help

 

[Daffodil]

I was in hospital on IV anti biotics (gentacmicin) for severe Urinary Tract infection which seems to have tripled with having ME/CFS. Oral drugs don't get rid of infection.

I had IV gentamicin for few days. Then they gave me a deadly drug called Cipro or Ciprofloxacin - this is a fluoroquinolone antibacterial medicine. This causes very serious permanent side effects which seems to affect people after only one dose.

Some of the side effects result in death. Tendon rupture or swelling of the tendon (tendinitis)- usually this occurs on the back of the ankle (Achilles) but can include the shoulder, hand, etc. Central Nervous System effects like siezures are not uncommon.

They only gave me 3 days of Cipro - my first dose my heart rate was so fast for 5 minutes. I looked up the site
AskaPatient.com - put in Cipro - and was amazed at how many people have permanent injury from this drug from only one or two doses.

Please advise - I still need to finish something to get rid of my infection. My Sedimentation rate is sky high, my C reactive protein is sky high, and my hemoglobin, hemotocrits are very low ( I have anemia) but not this low.

Thanks

Maybe your heart rate increase was related to herxheimer reaction?

 

[Eeyore]

Most of the warnings on cipro aren't too much of a concern and are very rare and/or not severe/permanent. I do think the tendon issues are real though, and that in many cases, when the patient shows up several months later with a swollen achilles tendon, the doc simply doesn't put it together. QT prolongation is true of a huge number of drugs taken by many people every day - not saying it's irrelevant, but it should be considered in the context of your particular health issues and other meds.

If you look up any drug at all - benadryl, tylenol, aspirin - you'll find the potential for death. It doesn't mean it's even remotely likely.

I do agree with you that the tendon issues are somewhat overlooked in cipro though, and I would probably ask for an alternative antibiotic if it were me. I did once - and I'm not too scared by long laundry lists of potential side effects in general.

 

[starlily88]

Hi Starlily,

A lot of what I was going to say was covered by other people, so I will say that I was also scared off taking Cipro when I first became ill. It turned out that I had a Yersinia infection, and the Cipro would have been the best bet by far to get rid of the infection. I have since taken 3 weeks of Moxifloxacin, without side effects apart diarrhea towards the end of the course, but unfortunately 3 weeks after being ill for 6 months isn't as effective as 1 week after being ill for a few days. I would also add that quinolone poisoning sounds awful, but then ME isn't much fun either (I couldn't tell if you have had ME for a while or you think you are starting to develop it), and if I was given the chance again I would definitely take the Cipro.

@msf - thanks for your reply. Much appreciated. I have had ME/CFS for a very long time - almost 20 years. . So sorry you had awful infection. I have had chronic UTI infections for awhile.- practically living in the hospital. Oral anti biotics don't work on me at all.

Doing just 2 dosese of Cipro I have developed tendonitis in my hand really bad, and a very rapid heart rate..

The only drug that works is the IV antibiotics - like Gentamicin which I get at 80 mg dripped in every 12 hours.
I only needed one more day of it for it to "clear" up - but usually I am in hospital for 5 days of treatment.