Sunday, January 19, 2014

cipro/levaquin awareness


At the risk of sounding like a nutter, I'm going to talk a little (OK, a lot) about a certain antibiotic I was given for a possible UTI. This is pretty off topic, so forgive me, but it's a commonly prescribed drug in the USA and I want as many as possible to be aware so you can avoid what happened to me. If you don't enjoy hearing folks blather on about their medical problems, I suggest skipping the rest of this post. I won't be offended!

Please note: I am not a medical doctor, nor do I play one on TV. This is my personal experience. Ok?

Cipro and Levaquin (and there may be other names/forms) are fluoroquinolone types of antibiotics and are commonly given for bacterial infections like UTIs and sinus infections, among other things. The generic name for Cipro is ciprofloxacin.

So the reason for this post is that I had an adverse reaction to Cipro and, most importantly, I didn't clue in that I was having one right away because the symptoms are not normally associated with antibiotics. I confess I had started the medication without reading the entire paper insert that came from the pharmacist. (Yes, that is dumb.) After two days on Cipro I had:
  • insomnia
  • headaches
  • feelings of depression
  • feelings of anxiety
  • strange/irrational thoughts
  • tremors in my hands
  • charley horses in the night, with sore calf muscle the entire next day
I started to worry about it, especially the tremor in my hands. I decided to put it all down to too much caffeine and my hormone cycle. After another couple of days on Cipro with the same symptoms, I had to get out of the house and get some sunshine to get a handle on my blues. So I took a brisk walk through my neighborhood, about a mile and a half. As soon as I got back, my shoulder started to throb. It was quite painful, and a complete mystery since I had done nothing strenuous.

As I sat on the couch icing my shoulder and feeling a wreck, I read the insert that came with the drug and realized what was going on: not only was I having the adverse neuro side effects, I now had tendinitis in my shoulder. I had already taken the evening dose and felt a little panicked about that, but resolved to call my doctor the next morning and not to take another pill.

I also noticed that suddenly all my joints started to pop and crack with every movement and my muscles felt tight. Shoulders, wrists, hips, knees, and ankles. All popping continuously. I thought, 'this can't be good'. 

That night I searched the internet for some advice on how to counteract the adverse reaction I was having to the drug. I read in several places that Cipro can leach away too much magnesium, so I immediately downed two magnesium supplements. I've been taking magnesium every single day since then, and it has helped a lot. My compounding pharmacist also recommended taking Vitamin C, which I did and do. (Now, remember that note about how I'm not a medical doctor? You need to ask yours before taking supplements.)

I called my doc and pharmacist in the morning to let them know about my adverse reaction so that I am never prescribed a fluoroquinolone antibiotic again. My doc told me to definitely quit taking the drug. It took me several weeks to get back to mostly normal. The mental craziness went away pretty quickly. Now, six months later, I'm still dealing with intermittent joint/tendon pain and tightness, and I'm much more prone to injury when I exercise, but it is mostly better overall. I do still have a tremor in both hands, but only when I move them in a certain way. Pretty weird, and may be permanent.

Since then I've spoken with several friends who have all had various adverse reactions to Cipro or Levaquin. Which is why I'm writing this post! Because these rare side effects don't seem to be that rare, nor does it seem to matter if you have taken it before with no problems. My MIL took Cipro for a UTI recently and even though she's taken it many times, this time she developed unexplained shoulder pain.

Even some doctors are not aware of the risks. One friend from church said his knee started killing him after five days on Cipro for a sinus infection and he called his doctor to ask him about it. His doctor told him there was no way it was the antibiotic and advised him to continue taking the full ten-day course. He followed his doctor's advice, and almost had to have knee surgery afterward.

I think in this day and age of overstressed and overloaded doctors it's helpful to be your own best patient advocate. For instance, Cipro has been given not one, but two black box FDA warnings, one of which talks about the risk of tendinitis/tendon rupture. The possibility of tendinitis is not just in the Achilles tendon - it's every tendon in your body. (Late note: I've just read that the FDA is requiring a new warning on the label of fluoroquinolone drugs regarding "possibly permanent nerve damage". Is the risk really worth it?)

Two more notes: even though my doctor never mentioned it, I found out from the insert that while taking Cipro you should stay away from:
  • NSAIDs (including common over-the-counter anti-inflammatory meds like Advil, aspirin and Motrin) Now this seems particularly ironic, since those drugs are the first thing most people reach for when they have tendinitis or joint pain. I took one for the pain in my shoulder before I realized.
  • Caffeine (doh!) as it can make the crazy nervous system side effects even worse. Hello, me and coffee? I wish I had known.
Ok, sorry about the long post that has absolutely nothing to do with crafting. But! If this post saves even one person from suffering all the side effect super-crazified-weirdness that I did, my work here is done. If you start having any adverse reaction, my hope is that you won't wait and wonder, like I did. Call your doctor right away!

What isn't the moral of this story: to avoid antibiotics altogether. I'm not anti-antibiotic. There are other classes of antibiotics that do not have these types of risks. Also, I'm sure that many folks do take Cipro and Levaquin with no adverse effects...at least I hope that is true! The moral of this story is to be properly informed before you start taking any Rx meds, including Cipro/Levaquin! Read your drug inserts! Be your own best patient advocate.

The end!

19 comments:

  1. Thank you for sharing your experience! It's important to understand that powerful drugs can have powerful consequences beyond their intended use. And you are absolutely right that we have to be our own advocates in our treatment. So many doctors seldom encounter the affected exceptions and treat all patients as though they will all have the same reaction (or lack of reaction) to a drug.

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    1. Yes, Cipro in particular seems like using a sledgehammer to crack a nut when it's given for a sinus infection or 'possible' UTI. Surely the risk does not outweigh the benefit!

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  2. Wow, that's quite the scary experience you had! Thanks for sharing that information. I'm so glad you figured it out before things got worse and that you're okay!

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    1. Thanks, Grandma G! Yes, it was scary. I hope it helps someone else to make an informed decision!

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  3. Larissa! I am so sorry to hear that this happened to you! It's terrible! I think I will ask for a different drug next time I need antibiotics. The docs around here like to prescribe z-packs a lot...

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    1. Juju, it's definitely worth asking about. There are other antibiotics than Cipro or Levaquin that are effective and less risky. Frankly, I don't know why they are prescribed for relatively mild ailments.

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  4. That is terrible! So sorry that happened to you and thank you so much for the info. I am a pharmaceutical reps dream and I rarely read the insert before I have an issue. Thanks for the reminder to read then pop the pill. :-)

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    1. Thanks, Beth, and yes, please be sure to read the boring insert! haha. I learned my lesson.

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  5. Thank you for sharing this with us. I try to avoid antibiotics, especially when it's prescribed for a "suspected" infection. If they don't know for sure, the risk is just not worth it. Besides, unnecessary antibiotic use leads to resistant bugs and the need for even stronger (and more dangerous) drugs.

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  6. This was a good heads up (I would have never associated these symptoms as a side-effect). You did a good job of presenting the information objectively.

    Thanks for sharing!

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    1. Hey, Love This Space, thank you! Yes, I was really taken by surprise!

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    1. Thank you, Emily! So am I. It's been weighing on me! I hope it helps someone else.

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  8. Thanks for sharing. I never took those side effects seriously until it happened to me. I was taking a blood pressure med and I had a cough that was almost stopping my days. It was cold season.. who would have thought? My crazy grannie clued me in (I can't believe I listened because that woman drinks vinegar!) It is so important to read those inserts. I'm glad that you took action before it became very serious.

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    1. Lisa, hi, I'm so sorry you had an adverse reaction to your meds and very thankful your wise Grannie was looking out for you!

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  9. Another strange side effect of this drug can be genital ulcers, which I had read about in the package insert. I had also dismissed them as being unlikely to occur. Sadly I was wrong. And all because co-amoxiclav causes me to have thrush, which would have been much easier to treat & much less uncomfortable! So next time I need antibiotics it'll be back to anything but Ci pro!

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  10. FFRef a good supplement for UTIs is called d-mannose and you can get it at a health food store, or prob online. It's just the simple sugars from cranberries. It's even helping my cat. lol.
    * I'm not a doc either - just personal experience. * Be sure to read up on supplements also...

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    1. Robin, thanks, that is what I used after I quit taking Cipro and it seemed to really help!

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