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“FLOXED” AGAIN

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My poor mom!  She has a cold.  She has Lymphoma.  And if that isn’t enough, her doctors “floxed” her.

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A week ago, she was running a low-grade fever, so I placed a weekend call to her oncologist.  Unbeknownst to me at the time, he immediately prescribed her Avelox, without ever seeing her, without determining whether she had a bacterial infection.  This is on top of 2 months of prescribed Prednisone, a corticosteroid drug that she was prescribed to help control the side effects from her cancer treatment.

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Avelox is a fluoroquionolone.  I read the “black box” that accompanied her medication.  In the very first sentence it warns that the risk for tendon rupture and central nervous  system (CNS) problems is further increased in individuals over 60 years of age (mom is 89), or in BOLD PRINT and CAPITALIZED, those “taking corticosteroid drugs”.  The label continues with the statement that Avelox should not be taken unless there is significant evidence of bacterial infection.  I quickly called the doctor back (in case he really didn’t remember that my mom was taking Prednisone) and told him that I was concerned.  I also explained how I personally was “floxed” (more on that below).  He assured me that given her Lymphoma, this drug was necessary (something he determined without even seeing her), and that she would be fine.  He dismissed my personal experience being “floxed” as rare.

Well, my sample just doubled from 1 to 2, and I can now say that 100 percent of my sample exhibits adverse reactions to these fluoroquinolone drugs!

In just two days on Avelox,  my mom went from being a vibrant, self-aware and easy-going 89-yr-old (despite Lymphoma) to a confused, scared and anxious patient.  She became very dizzy, and I could see her confusion and anxiety were getting worse.  She continued to have cold symptoms, but it was the CNS symptoms that were alarming.  She was falling and very disoriented.  I panicked and called the doctor, thinking that maybe her Lymphoma was advancing, taking over.  After a 10 minute discussion, it hit me.  Mom was “floxed”.  Her doctor could only manage “sometimes the elderly have trouble with this class of drugs”.

How could I let this happen!?  Why didn’t I insist that she be prescribed another antibiotic?  Why didn’t I let my instincts prevail?  Why did I let the doctor convince me not to listen to the Black Box warning?  Why did I allow him to ignore the warning?  Why would I need to fight for a doctor to heed such a warning? Why didn’t I listen to my own hard earned wisdom?

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Eleven years ago, I was “floxed”.  For those that have not had the pleasure of this experience, “floxed” is an adjective used to describe an adverse drug reaction to the group of antibiotics known as fluoroquinolones.  My particular brand of fluoroquionolone was Levaquin, which was prescribed to me after developing a post-operative infection from my  prophylatic oopherectomy.  Days after my surgery, I was not feeling well and noticed that my incision  was looking red and angry.  I visited my doctor, who assured me the incision looked normal and attempted to reassure me with “don’t doctors always know best?” (the question now makes me shudder).  I was SO “fine” that I ended up with an abscess on my colon that could not be drained, was put on intravenous antibiotics, and spent 3 days in the hospital recovering.

Levaquin made me feel very weird - NOT just your average antibiotic reaction.  I felt really confused, so much so that I could barely speak coherently.  I later learned that this adverse drug reaction stemming from fluoroquinolones is known as “brain fog”.  I was dizzy, nauseous, confused, anxious, agitated and felt like I was having an out-of-body experience.  On my first day home from the hospital, I went to get up from bed and felt sharp pains in my Achilles tendons.  They were swollen to twice their size, and I could barely walk.  I called my infectious disease doctor and his response

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beaubeau 5 pts

Hello "Nobody wants to be Ethel",

The problem is that while she is undergoing chemotherapy, it is her oncologist who will be handling what could be immune reactions to the chemo or pulmonary complications related to the presence of lymphoma in her lung and ribs. In fact, her oncologist is very good but when I placed the weekend call on her behalf, we got the weekend fill-in, who it turns out has none of his own patients at Florida Cancer Specialists, but only fills in on weekends. In other words, he has no accountability to any of the patients he sees.

Again, in addition to and beyond the issue of being "floxed," the experience just reinforced the fact that I need to be there every step of the way for mom. I'm just glad I'm here to see her through.

Thanks for replying and for your sympathy.
All the Best,
Susan

beaubeau 5 pts

Hi Karin,

I certainly don't mean to suggest that everyone has the same reaction to fluoroquinolones, but these negative reactions are common enough that the FDA was forced to put a Black Box warning on them. And they are common enough that I shouldn't have to fight to get my mom's medical providers (or mine in the past) to even consider the possibility that she's having a negative reaction to them.

If Levaquin works for you, then of course you make your decisions based upon your body and your specifics (medical condition, age, etc) and of course any previous experiences you have with prescribed pharmaceuticals.

Upon writing this blog, a new father commented on my own site (http://www.4women.com/blog/?p=326) about being floxed to the point he is unable to hold his newborn baby. Very sad.

I hope that your treatments do help you and that you never experience these sort of reactions. Thank you for writing.
Susan

Nobody wants to be Ethel 5 pts

I am so sorry about the side effects your mom experienced. The only thing I would recommend is that you get a gerontologist to be her primary care provider. They specialize in treating elderly patients and are aware of medications that work best for this population. I have parents who are 84 and 88 yr old and it is scary for me when I help them with their medication management. Elderly patient are so much more sensitive to the side effects of medications and your mother with lymphoma compounds the problem. Patty

Karin K 5 pts

I have a Primary Immune Deficiency, and as a result, I take a LOT of antibiotics. Levaquin is one that always works pretty well for me. I never even heard of these reactions before!

I'm sorry this happened to you and your mom. I hope you both fully recover.