Infections and Levaquin toxicity

General
1

I started to post this under the sinus infection thread, but didn't want to hijack the OP's thread. I seem to catch everything coming and going while on MTX, and have had one bout of pneumonia and am currently recovering from severe bronchitis--all in the past six months.

I've always tried to be proactive and get on top of infections. With this latest bronchitis, I was prescribed Levaquin by my GP. A few days after starting it, the trouble started. I began to perspire profusely, which I thought was the fever. I noticed wavy lines in my field of vision. Fatigue was so bad that taking a shower was all I could do in a 24-hour period. Then, I began to have muscle aches and pains. I thought it was all part of having flu until I mentioned this to my doc during a follow-up appointment. He immediately said, "Stop the Levaquin."

He said Levaquin can cause all the symptoms I was experiencing--and more. One of the worst possibilities is that Levaquin toxicity can cause multiple tendonitis sites with ruptures. Of course I had been having tendon pain, but that's nothing new to those of us with PsA. I simply thought it was more of the same. The next day, the excruciating tendon pains started. That was a month ago, and it still happens. In addition to the muscle and tendon pain, I continue to suffer fatigue. And, I wonder if I will be able to continue working part-time. Walking is a challenge; reaching for things causes terrible shooting pains in my tendons; and I am awakened several times every night by muscle cramps in my arms, legs, neck, and even my sides.

Another truly frightening bit of news is that tendon rupture can occur without warning, and under no load, for a year or even longer. Many people with floroquinolone toxicity will rupture the achilles tendon. Slightly fewer will rupture the biceps tendon.

I have taken Levaquin before without issue, but my number finally came up. Toxicity is more likely in those who have used steroids, those around age 60 (I'm 58) and in those with RA. PsA isn't mentioned in the literature, but we all know that story. My guess is that PsA probably is a factor, also.

I have pondered whether to post about this for a few weeks now. I didn't want to be the voice of gloom and doom. But the other side of the argument finally won because I don't want any of you to have to endure this. It can happen with any of the floroquinolone antibiotics--which include Cipro, Levaquin and Avelox. The FDA has required a black box warning on this class of antibiotics. Why they are still being used as first-line drugs is a mystery. I have mentioned my toxicity to my other docs as I have seen them and several have told me they do not prescribe floroquinolones anymore. My opthamologist, however, said these are still first-line drugs in eye surgery. And, he said, the same side FX are possible even with eye drops. Scary, scary stuff!

Please, please, think twice before taking this class of drugs. How I wish I could go back in time and prevent this.

2

Oh those are scary thoughts about that drug, ESP since I am no on it. I spiked a fever of 101.8 after 5 days of taking the Levaquin. I don’t know if I caught a viral flu then or what.

3

My fever came and went for days. I don’t know if it was the bronchitis or the levaquin. Just be very careful and call your doc at the first sign of trouble. Don’t do what I did and try to figure it out for yourself. Believe me, you don’t want to get it wrong with this drug. Unlike many medications, the side FX don’t simply go away when you stop Levaquin.

I don’t want to frighten you. I took levaquin many times without problems. Just be cautious!

4

Thanks for sharing this. You shouldn't fault yourself though. . . As you said, you've taken it many times before, and your symptoms seemed like they could have been related to being sick.

5

Levaquin is a powerful drug, but that’s where we are now with antibiotics and drug resistance. Most of the time, docs like to try something else before Levaquin; it’s like our ace in the hole. Prescribers want to have it because it works, so many are usually pretty stingy when prescribing it. I just don’t want folks to think that it’s handed out like candy or a Z-pack.

The adverse reactions and allergic reactions are not uncommon with Levaquin, and they can be severe. When I administered it IV in the ER, I was always so careful with it: I ran it on a pump, I ran it slllooooooooooowwwwly, and I kept rescue drugs handy. I had never given a drug that I had seen give that many reactions to people. So, Don’t feel like Debbie Downer! Your words of caution may help someone down the road. I am sorry that you had to experience this first hand. It really boils down (again) to lack of patient education. Had you been warned, you could have stopped the drug earlier and maybe saved yourself some pain.

Here’s the take-away: even if you have taken a drug before, read the patient information before you take it; call the doc with any questions, before you take it; and please don’t be afraid to call the doc if anything odd happens-that’s why they went to med school! Also, pick the nurse’s brain before you leave the office, they can usually give you a run down of SE that is easy to understand and hits the high points.

6

hi Byrd Feeder,

The months of December and January were physically bad for me, had thrush,sinusitis, bronchitis and mild pneumonia. When the doctor was ready to order a drug for the respiratory issues I automatically said, no Levoquin. Since it's an effective drug( not saying safe!) it seems to be the one to run to. We had a discussion, he understood my concerns and I was given Biaxin. The Biaxin took longer to kick in, but was okay and safer. I'm sorry you had that horrible experience with Levoquin and hope improvement if coming along. Levoquin for me only caused nausea and fatigue, but still I avoid it.

Keep up the good job of telling other about your negative experience, how it affects PsA and your experience will help others. You are doing a service to others by posts such as this, thanks from all !

Hang in there and never stop advocating for yourself !

7

I've never taken levaquin (that I know of), and will remember it for future infections...as in...I will remember to "just say no." Thanks for sharing this.

8

BTW - Cipro and Doxy are often the first medications prescribed for Lyme dis. - so if any of you have anything come down the road looking like Lyme to a Doc. for yours be aware so you are not caught of guard re: Cipro.

9

ooooh....I was on Cipro, but didn't have any adverse reactions. I found a teeny tiny itty bitty tick embedded in my leg one day a couple of years ago. Didn't even realize it was a tick until I started messing with it - looked like a freckle, but in a place I had never had a freckle before. Pulled the dumb thing out...but didn't get the head, I guess. It got swollen, and had a red "bullseye" looking rash around it, so I called the doc who made me come in. I guess the bullseye is kinda a dead giveaway. He actually told me that he didn't think it had been in me long enough to give me lyme, (even though it had the classic rash), but gave me Cipro as a precaution because he knew my immune system was weird (he is a GP, but was also the original doc who recognized that I had PsA and sent me to a Rheumy for offical diagnosis).

10

I was bitten by a tick in April 2013. Within days, I started having excruciating muscle spasms in my feet, and never connected the tick bite to the pains until after about three weeks. I had no fever or rash, but was tested for LYME and other co-infections. Tests came back negative but started on Doxy for 3 weeks. After the 21 days, I still had symptoms, and psoriasis plaques became huge, bloody, and inflamed. I went back to doctor, and she ran tests again, then put me on Levoquin. On the 12th day of dosing, I completely fell out, could not lift my head, and feared I would have to go to the emergency room. I didn't, because during these 2 months of doctor visits, antibiotics w/o resolution to pain, fatigue, nausea, etc., I felt like I was being treated as a hypochodriac, not a patient in need. I was referred to a rheumatologist for PsA. Fast forward to October and three months of those rheumy appointments with some resolution for the fatique using Plaquenil. I complained I wasn't getting better, and the doctor ordered tests to put me on Methotrexate, again discounting my tick bite as a source of my ill-health. Meanwhile, I had contacted a LLMD because I was convinced my sudden symptoms came on from the tick bite. Another Lyme test-negative. BUT...Rocky Mountain Fever-positive. No other doctor had requested the RMSF test, and the LLMD said my foot and hand pains prompted her to request this test. Many viruses were also active-herpes, chlamydia pneumonia, etc. I lost 23 pounds from my small frame-weighed in at the worst time of my infection at 96 pounds.The LLMD told me these come out of immune suppression when our system is under stress from infection or trauma. I am now taking Biaxin for the second month, along with an anti-viral, antifungal, low dose thyroid, the Plaquenil, and of course, probiotics. I cancelled my rheumie appt. and will never go back to him. I refused the Methtrexate. I am finally able to perform my duties at work w/o feeling dazed, in pain, and completely exhausted. My psoriasis plaques have improved and no longer bleed. IMPORTANT: Levoquin does not treat RMSF. But the right testing and a good doctor does. I am 59 years old. Middle age immune systems under-react (no fever or rash)and over-react (auto-immune issues). FINALLY, after almost 9 months, I feel I am on the road back to health. I don't feel like I am dying anymore and have re-gained 8 pounds in 6 weeks.

11

Well, how would one know if the sweating, fatigue and body aches were not the flu or an infection vs. a reaction to Leviquin?
I would have to guess the level of intensity of what you described would be the difference?
Just wondered what your thoughts were on this Birdfeeder, or anyone else?

12

I can not imagine WHY your pharmacist did not question this error in prescribing. The only thing WORSE would have been penicillin. Occasionally there is an infection serious enough that the risk need taken, but only with close supervision.

13

Doctors have a responsibility to tell you the risks. None of the doctors I saw before paying an LLMD in cash spent more than 10 minutes with me, except a PA. He was just out of PA school, and sincerely wanting to help. His supervising physician? Now that's another story. Do your homework and prepare for your visits. Find a doctor you can trust.

14

Hi Cheryl,

The development of symptoms was slow and insidious for me. Other people may show dramatic symptoms after a single dose. However, I can say this: I can only describe the tendon pain as stabbing and excruciating. In fact, I sat in a chair and cried with the pain. I'm not generally wimpy about pain; after all, we live with pain every day from PsA and learn to deal with it. But this is different.

In the beginning, when toxicity was developing and symptoms weren't full-blown, I did confuse the moderate fatigue, soreness, and sweating with flu symptoms. Also, it was during the Christmas holidays, and I chalked a lot of it up to the stresses of preparing for the holidays. The muscles in my upper back and neck were on fire, but that's not exactly a rare event for me. Eventually fatigue was to the point that I could tolerate very little activity. Taking a shower was all I could do in 24-hour period. My arms were so weak that I could not lift a gallon of milk. Walking from one room to another would result in profuse sweating--to the point I would have to change clothes. And, I slept A LOT. These symptoms have improved, but I am no where near 100 percent.

The odd thing (and the tip-off, for me, that something was wrong) was that as my respiratory symptoms improved, these other symptoms were hanging on and/or becoming worse. This was what prompted me to mention it to my GP. Thank heavens he knew what was wrong. I can't imagine what would have happened if I had taken ten doses instead of only five.

15

That is scary. I’m so sorry you are going through that. I hope you get better soon. I have had so many things happen that it is hard to trust my doctors. What a terrible ordeal you’ve had!

16

Thanks Byrd Feeder. I’ve had docs poo poo the warnings on Leviquin before. Thanks for your feedback and description.

17

You're welcome, Cheryl. I just hope my experience can help someone else avoid this. I have read that some doctors down-play the significance of the black-box warning on Levaquin. And, I can almost see why they do. We are so used to disregarding the lists of side effects that come with any medication. My gosh, the FX listed on aspirin would be enough to scare even the most fearless among us if we took them seriously. My opthamologist blanched out white when I told him about it. His reaction was that "We hear about this stuff, but we never think we'll actually see it in practice." Bingo.

Levaquin was the best-selling antibiotic in 2010. But the thousands of lawsuits against its manufacturer (Ortho-McNeil and parent company Johnson and Johnson) apparently have cut into those sales in subsequent years. And the FDA has warned against prescribing to the older population. Still, some doctors just don't get it. I hope it never happens to them or any of their patients.

18

I am so glad you said this. My gut said the same thing…why on earth? There are many other abx that would have been effective.



tntlamb said:

I can not imagine WHY your pharmacist did not question this error in prescribing. The only thing WORSE would have been penicillin. Occasionally there is an infection serious enough that the risk need taken, but only with close supervision.

19

And safer. Safer would have been good! I am just hoping this is temporary. For many, it is permanent. I went to the grocery store yesterday and cooked dinner. Then I slept for 18 hours. Scary stuff.

20

By the way, my CVS pharmacist said it would all go away when I stopped the med. he knows nothing about levaquin toxicity, which probably answers why the pharmacist didn’t question the script.