Monday, February 14, 2011

The Blame Game

Who is to blame?  This question has entered my mind time and time again.  Who do I totally blame for my adverse reaction to Fluoroquinolones?  This can be a loaded, and unfortunately, not a clear cut answer.  Well, at least in my case.  I knew I had several “mild” reactions to medications when I entered that immediate emergency care facility.  I could remember them all, except for one. I was so disoriented that I could not recall the name.   The physician rattled off several suggestions, but none sounded familiar.  Ugh! I should have made a list and kept it in my purse.  (Fault- mine)

The nurse later entered my “cubicle” where I had already received two bags of IV fluids.  I was feeling better, and could have a somewhat lucid conversation now.  He started my third and final bag of fluid, and injected an “antibiotic” into my IV.  He had been present when I stated I had a reaction to an “unremembered” medication.  He did not mention the name of what he was giving me.    I immediately started feeling horrible.  I started having the most severe headache I have ever felt in my life, which is saying a lot since I have a history of migraines.  I could literally feel the pain move down my spinal column and into my hips.  I started shaking uncontrollably as if I had a high fever.  After checking my temperature multiple times, it was determined I did not have a fever.  The pain started moving down my legs, into my arms, sternum, and jaw.  It was unbearable.  Why was I suddenly feeling worse when, I had been getting better?  The staff’s response was that my body had been through a lot from being so sick, it was most likely that.  “What medicine did you give me?”  The answer was, “Levaquin”.  I knew immediately that was the medication I could not remember.   Why had they not SAID the medicine BEFORE entering it into my IV?  (Fault- nurse)

Believe it or not, even though I was having difficulty walking, and I obviously was turning for the worst, they discharged me home.  I was in unbearable pain that night.  I returned the next day to the same clinic.  I mentioned to a “new” physician of what occurred the previous day, and that I had been given Levaquin, a medication which I had a mild reaction from before.  I described that I felt like I had been hit by a car.  Anything bound by connective tissue was in extreme pain.  I also had a rash covering my neck and chest.  The doctor questioned why I was given Levaquin in the first place, and stated he did not see that it had been needed.  My WBC count was up because of the food poisoning, so no need for the antibiotic. He proceeded to order IV Prednisone and non-steroidal anti-inflammatory to help counteract the reaction.   I started feeling somewhat better during the IV, and thought it was helping.  I returned home, with a prescription of more prednisone and Zantac to help stop the absorption of the Levaquin by my body.  However, I started feeling even worse.  I now felt like I was being burned by acid from the inside out.  It was the most excruciating pain I have ever had.  Since it was still the weekend, I once again returned to the clinic.  But this time I had done some research…..prednisone and NSAIDs are specifically listed on the Levaquin patient information sheet not to use during adverse reactions, because it will make the reaction worse.  Steroids cause an increase risk of connective tissue damage, and NSAIDs cause an increase in Central Nervous System reactions.  I asked this same doctor about this new revelation, and his response was, “That is only for 70 year olds, not for people like you.”  He once again gave me a shot of NSAIDs, and I stupidly accepted his answer. (Fault- physician)  (Fault- me for stupidly believing him)

Thank goodness the weekend was now over, and I made an appointment with my general physician.  By this time the uncontrollable crying had started.  I could hardly tell her what happened over the weekend through the hysterical sobs.  I was in SO much pain!  Somehow she was able to get the gist of it, and I am convinced she now thought I was crazy.  I showed her my prescriptions.  She fortunately was educated enough in Fluoroquinolone reactions that she knew I needed to immediately stop the prednisone and NSAIDs.  She instructed me to keep the Zantac to interfere with the absorption of the Levaquin.  She gave me a prescription of Hydrocodone for the severe pain.  (Thank God!)  She had never seen a reaction like mine, and thought something else was also an underlying cause.  I will stop here with this recount, because if you have been following my blog, you know the doctor visits started, and I now have been diagnosed with large and small fiber peripheral neuropathy.

But for most, the blame game does not end there.  Most often the tables are turned on the victims themselves.   I have been fortunate that my neurologist does not blame me, but many others are being blamed for their reaction.  Perhaps they were under stress, perhaps they have MS or Fibromyalgia and did not know it, they exercise too hard, or maybe they were predisposed for a neurological problem.   The list goes on and on.  FQ toxicity victims are not getting support from their physicians to help their fight against the drug manufacturers.   One recent post on the FB Fluoroquinolone group, describes it this way.  “[It is like] a rape that you report and no one believes. There’s evidence, proof, but they turn a blind eye. The rapist is free to keep raping over and over.  Everyone thinks that the one you are blaming is innocent....he hasn’t done it to other people. Why would he do it to you? So, they let him roam around....and he will attack, again & again!!!”  A response back, “Yes. And the victim gets blamed for everything.”

I cannot end this post without mentioning, in my opinion, the two most important parties in this incident, the FDA and the drug companies; (Johnson & Johnson makers of Levaquin, and Bayer the makers of Cipro.)  In my opinion, physicians have no intention of harming their patients.  They do their best with the knowledge they have.   However, I do blame the drug companies for poorly educating physicians, or the pharmaceutical reps that are pushing these medications.  Doctors are not educated in what to do for adverse events, which in my case made the situation worse.  They push the pharmaceutical reps to convince the doctors that these are great meds, even for minor bacterial infections.  In reality, these meds were originally intended for severe infections in which other antibiotics did not work, or for treating anthrax or malaria.  There is a black box warning for Fluoroquinolones for tendon ruptures, but I am finding that most never were given information about the warning.  If you receive an IV, as I did, no paperwork or warning is ever given to you.   (Fault- drug companies for not educating proper use and what to do for adverse reactions).

 The FDA mission is to protect the public from unsafe drugsHowever, they are doing nothing about the daily reports of adverse reactions.  Many of these medications are being severely restricted or banned by foreign governments, yet they are the number one prescribed antibiotic in the United States right now.  Just look on askapatient.com to see how often severe reactions are reported on that website alone, and that does not include the people who do not find that page.  There are 2600 court cases pending right now for tendon ruptures alone.  These do not include people that have been affected in other ways, like me.  The problem is the FDA acquires a lot of funding from pharmaceutical companies.  This causes a huge conflict of interest; therefore medications are not pulled from the market.  The current black box warning is only as a result of a lawsuit by the consumer group Public Citizen against the FDA, for ignoring long standing evidence that FQs cause tendon ruptures. (Fault- FDA for not protecting us)

So, who is to blame the most?  It certainly is not me or any other victim of Fluoroquinolone Toxicity.  It is easy to play the blame game; point fingers at the victims, the doctors, the pharmacist, or the nurse.  But in reality, it is the drug company that educates all of these people and the FDA that is supposed to protect us.  That is who I place the blame on the most.