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!

32 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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  11. Did you ever fully recover? Thank you!

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    1. Wow, so sorry to be this late in replying. My short answer is: no. I have never fully recovered. I still have the tremor and I think I'm overall more prone to joint injury than I was before. The drug now carries more black box warnings. I really wish they would quit prescribing it so lightly.

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  12. Thank you for posting this. I took Cipro for 4 days for an infection that my doctor felt might be causing my acne. My life has been completely ruined ever since.

    My knee swelled up so badly I completely lost motion in my left leg. For the past 4 weeks I can barely walk. They think it might have triggered rheumatoid arthritis. (Which if I now have it, is a permanent condition.) I had to get crutches for the first time in my life and I'm someone who has never had issues with my legs or any joints.

    I started having powerful and nervy muscle spasms all over my body, even in my head. These drugs destroyed my nervous system and now I'm seeing a neurologist for what could be potentially permanent nerve damage.

    My memory has been impaired which is very scary, this stuff RUINS lives. Don't let anyone you care about take it. There are alternative antibiotics out there than can treat things like UTIs, minor infections etc. This should be a last resort if you're on your death bed. It was the first antibiotic I have taken in my life and now I don't have much of a life.

    I'm trying with everything I have to make a full recovery and despite my rant I am trying to stay positive. It's just hard because a lot of the testimony I have seen from people has stated that the damage they suffered never went away. It's been two months since I took it and I haven't seen any improvement. If anything it's gotten worse. I only took it for four days! I can't imagine how much damage it could have done if I took it for the full 10 days.

    I'm getting married next year and I don't even know if I'm going to be able to walk down the aisle at my own wedding. Heed this warning. Avoid at all costs. I'm only posting this in the hope that I can save someone else from going through what I have.

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    1. I’m so sorry to hear this! I pray you have a full recovery and are able to carry on. I agree — I think they should never prescribe it unless it’s a situation of life/death and there aren’t other options. I hear it was developed to fight anthrax — anthrax! How it became the go-to UTI treatment is beyond me.

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  13. Thank you for sharing your story! I had already decided to not take that class of antibiotic any more because of tendon issues; a weak ankle always flares up for weeks after I take it... And thanks to you, I now know that I also cant take it because I am on prescribed NSAIDs, indispensable because I have psoriatic arthritis... From your experience, it sure doesn't sound like these side effects are rare at all! Thanks for raising the alarm!

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  14. Hey I'm having a similar experience from taking the antibiotic. Any improvement yet? I'm going on 4 months since taking it....

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    1. Zach, I'm very sorry to hear that. I'm still in the same place basically that I was 6 mos after taking it. I still have the weird tremor in my hands. I do have nerve related issues that are intermittent. I'm still more prone overall to injury and muscle tightness. Not sure all of that is a direct result of the injury, but it sure seems like it compared to my pre-antibiotic health. I wish you a full and complete recovery!

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  15. Thank you for writing this post. I think I may have been cipro "floxxed" as they call it. I was prescribed cipro for a possible prostate infection. And I even read the black box warning, so I called my doctor and said hey I've had achilles tendonitis problems before, and should I refrain from working out. She said don't worry, just make sure to drink lots of water. Well, after 4 pills and two days later, just after a 10 min walk my achilles and calf started to hurt. Then, that night when I usually stretch my muscles, I stretched and literally could not "feel" the stretches, if that makes sense. Like there was no reflex at all. And a day later, all my joints have started to ache and crack when moved, as well as my left tricep keeps twitching for no reason. I will try to get magnesium and vitamin C to add to my daily multi vitamin. Were you ever able to start working out again? What kind of injuries did you sustain, like actual torn tendons and pulled muscles? It's been 5 days since I've taken them and I just hope that it doesn't get worse(like some of the other cipro horror stories I've read on the internet with people having to go in wheelchairs) I can't believe just after taking a few antibiotic pills that may have ruined my life forever. But thank you for posting your story I really appreciate being able to read others peoples experiences.

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    1. Hello! I'm very sorry to hear this. My permanent injury was nerve damage. I did not experience a torn tendon or muscle at the time, just the tightness, popping, cramps, and inflammation. I've exercised on a semi regular basis over the years since, but never like I was able to pre-Cipro. I'm much more prone to injury, and I exercise regularly for a time and then have to quit when I pull/injure something. My muscles and joints just seem to stay tight and I get a lot of muscle twitching also. I still take Magnesium when that flares up and it helps some. I'm glad that my post helped a little, and hopefully you will experience a full recovery. I'd go easy on the exercising until you can relieve the tightness, to avoid injury. God bless you.

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  16. Can someone please help me I'm scared hearing all these stories.hopeing I don't get worse I stoped takeing levofloxcain which is in the same family as cipo. And been experiencing intermediate pain I haven't takeing the drug in over a mouth my joints crack alot. I just hope it don't get worse. I've been taking magnesium and vitamin B12 for two days now.does the side effects keeps getting worse ?

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    1. Definitely contact your doctor to talk about your adverse reaction with them. My side effects did not worsen after discontinuing it. Some side effects resolved right away w the supplements but the nerve damage and some other things seem permanent. I wish you a full recovery! Very sorry you are experiencing it.

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  17. Thank you so much for your post. I have a UTI and I was ordered cipro, the other meds werent as good on the culture. I knew it was black box and was scared to try it. But I did, took only 3 pills and my joints started cracking and my legs started hurting. I stopped taking them. I am so glad that I read your post or else I prob think is in in my head like most people would. I hope it all goes away and Ill take the vitamins you said. BTW for anyone who reads this. Dr Berg on youtube said to take vitamin B1 or nutrional yeast when taking these kinds of drugs because it does lead to B1 deficiency!

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    1. Oh dear, I'm sorry to hear this! I hope you feel better soon!

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