Jacksonville, FL"I want to figure out a way to warn people like myself against the debilitating side effects that Levaquin has caused," says Jan, who was a director of nursing before she became disabled. Now she has that opportunity.
In February 2008 Jan was diagnosed with an upper respiratory disorder; she was hospitalized for four days and was given Levaquin orally and by IV. " I never had any problems with joints, muscles or tendons and no surgeries prior to this episode," says Jan. "Around the end of February I woke up one morning and my feet were purple bilaterally and very swollen. As well, I had severe shoulder pains and muscle cramps—all from these meds."
Jan was also given high doses of steroids due to her respiratory failure and she says the steroids caused the onset of Type 2 diabetes. "Here I was, taking these meds because I had bronchitis and now I can't even walk, simply because I had a cough," she says. But Jan believes Levaquin, not the steroids, is to blame for her tendon and joint issues.
It has been nothing short of a nightmare for Jan—who spent 26 years as a hospital corpsman (similar to a licensed nurse practitioner) and an advocate for the ill and abused. Now she is working hard as an advocate for her own care. "I have had to fight with hospital administration and six different doctors to see what is going on; nobody wants to assume responsibility," says Jan.
"I complained to doctors about pain in my joints and muscle weakness and the inability to stand on my feet from February until April," she says. " I stopped taking Levaquin at the end of February but by that time I was on it for four weeks--10 days oral, five days IV and another 20 days oral. And when you go to hospital you lose continuity of care because you lose your family physician. Had the hospital doctor taken the time to listen to my history, if he was aware of the consequences of Levaquin, I don't think they would have ever prescribed it…
The hospital staff said I was well enough to come home but about a week later, I stood up and fell flat on my face, cutting it with my glasses, and I was totally helpless. The next week I made an appointment with an orthopedic surgeon who immediately diagnosed my right Achilles tendon as ruptured. However, he treated my right foot and ignored my left foot and shoulder. I couldn't put any weight on my right foot for four weeks and wore a brace on my left leg because of the weakness and pain. Then I went through physical therapy and all the time my shoulder was getting worse.
Around June, I started walking through the Internet, looking for adverse reactions to the drugs I was taking. The doctors weren't giving me any answers. I googled Levaquin and bingo! Being a nurse I am used to reading side effects but I am not used to reading accounts of hundreds of people with problems and the FDA not doing anything about it.
( I sent the FDA a letter before Levaquin was black boxed, explaining my symptoms and asking them to attach the heaviest warning to this drug. One month later, the black box warning appeared. I don't know if it had anything to do with my letter or not…)
By July I went to another orthopedic surgeon, recommended by my physical therapist, and had surgery a week later on my shoulder—I had right shoulder rotator cuff repair and flap repair—they had to drill into the bone to reattach the tendon to the bone. It was very intensive, to say the least. I had been complaining about my shoulder since February: thank god for mood altering drugs! Now, according to the doctor, I am disabled and cannot work for another three months. I haven't had any income for some time now and this week I am going to a podiatrist to help me walk again. You naturally walk heel to toe but I am walking heel to heel; I can't put any weight on my toes.
It is so frustrating: I am getting cramps in my legs again and I woke up yesterday with bruises around my foot; Nobody has done an MRI yet so I don't know what is going on. Will I be screwed up forever?
(As an aside, I believe doctors are too eager to dish out drugs: the pharmaceutical companies give them free samples and supply them with figures on performance. And because so many patients cannot afford these meds, doctors just give them away. Levaquin costs more than $1 per pill and a ten-day supply costs $160.)
My husband was planning on retiring but instead he has a wife that can't work so he is also challenged. It just isn't fair. As for my prognosis, I have no idea and no way of knowing which tendon will go next. It is scary as hell and I am only 50. To go from having an asthma attack and muscle cramp to being in a wheelchair in such a short time has been overwhelming."