"The first time I took Levaquin I woke up in the middle of the night and couldn't get my breath," says Lilly (not her real name). "That should have been the first sign that I shouldn't take it.
By May I had aches in both shoulders, like I had tendonitis. I couldn't even lift my arms to put on my coat, it was so bad. Then the same pain started in my knees. I called my pharmacist to ask if a medication could be making me feel this way and he said that Levaquin could be to blame.
I phoned my doctor who prescribed Levaquin and turns out that he was a demon in disguise. He said if I go off the drug I could die, and he also said the pharmacist was full of BS. This doctor had no bedside manner…
Then I called the pharmacist back, I really didn't know what to do. He told me to call the manufacturer-- Ortho-McNeil Pharmaceutical, Inc. They said the same thing: stop taking it immediately. I called the doctor back, again. "I told you that you have to stay on that pill or you will lose your life,' he said. I deferred to this doctor and from April till October, I don't think a prison camp could have been worse.
I stayed on Levaquin. I was literally shuffling across the floor at this point; it got so bad that I was almost an invalid. Then it hit my Achilles tendons. It got to the point where I had to lie straight on my back and put my arms on my side like a board because I couldn't lie down any other way.
This part is embarrassing and it is why I want to remain anonymous: when I went to the toilet I had to fall back on the seat and I couldn't wipe my bum because I couldn't get back there—my husband had to help me! You would have thought I was 100 years old and completely disabled yet I am only 58 now.
On the July 4th weekend I called the doctor back and told him I couldn't live like this anymore. He just screamed at me and told me to call him back Tuesday.
I called the IU medical center at Indianapolis and they told me to come over right away. I saw the rheumatoid doctor and even had psychological exams. I knew I had tendonitis but they kept testing me. 'We have a prognosis: it is your Levaquin,' they said. I had known this all along! They replaced Levaquin with Bactrim and to this day I am still taking it. Then the medical center tried to call my doctor: apparently he refused to talk about it.
Recently I read an article in the newspaper about a man having severe tendonitis because of Levaquin and I mailed the article to this doctor with a note: 'You put my life through hell and I hope you don't do it to anyone else. And you owe me an apology,' I wrote. I still have the bottle of Levaquin he prescribed me.
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It took four months to recover from tendonitis but my shoulder tendons are still very sensitive. For instance, if I garden for too long, they will flare up again. I don't think I will ever be 100 percent better. That drug should be taken off the market. It might help some people but it is certainly not for everyone…I hope I can help others by telling my story.