Revisiting A BAD Drug – One Year Plus After an Antibiotic Injury

One year ago Sunday, I wrote an article about being injured by Levofloxacin, an antibiotic. Those who have been affected by this class of antibiotics, fluoroquinolones, refer to these injuries as being “floxed,” short for fluoroquinolone toxicity. The technical name for the syndrome of side effects I am experiencing over a year after taking my last generic Levaquin tablet.preview-5.jpg

At the time I wrote this piece, for the first time in months, I found myself able to stand on padded shoes in the morning without crying in pain from the searing and burning sensations on the soles of my feet. I could see a light at the end of the tunnel. Within a few weeks, I was certain that light had been the headlight of a train.

Although I had finished a course of physical therapy designed to teach me exercises to keep my tendons as limber as they could be through the changes in the mitochondrial DNA within my connective tissue. In reality, those exercises helped me to keep as active as I could as long as I could.

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The paraffin the occupational therapist used on my hands looked weird but felt wonderful

But the effects that started with fatigue and burning pain and stiffness in all of the connective tissue in my body didn’t stop in February when I wrote that piece. Yes, the pain in my feet began to lessen. But what replaced the pain proved to be more debilitating than the pain itself.

It was almost as if the nerves burned out. Fizzled out. In each of the areas of my body that had experienced extreme pain: First in the bottoms of my feet and my heels, knees, then my forearms, elbows, and shoulders I started to experience tingling sensations and dullness. Neuropathy.

Having neuropathy in my feet was not fun. While within my tiny apartment, it just became easy to fall into a wall and fall from wall to wall. I didn’t leave my apartment for much, so it worked.20180522_022642_HDR

In May, my newest granddaughter was born to my baby girl and her husband. Jaina has been a joy to visit with, but my limitations when holding her have broken this grandma’s heart. The strong arms that held my first grandchild 12 years ago now fatigue quickly and I am forced to give up holding her much quicker than I would like.

In August 2018, my mom and I went to Canada. On that trip that I was confronted with the difficult reality that I was perhaps more disabled than my 75-year-old mother. That was a difficult pill to swallow. It gets tough when you want to help your mom, but then she ends up assisting you. Realities can be uncomfortable.

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Photo by Joan Slighte

When we returned the effects from driving through the smoke of several forest fires combined with me completely overdoing it to give me my second bout of pneumonia in less than a year. My body was done. I’m still getting over that illness. I have not recovered the level of mobility I had in August. In September I began the process of asking for help.

After last year’s post, I joined many support groups on Facebook for “Floxies.” They were the source of much information. The lists of supplements that could help are long and I won’t copy them here. They work for some, but not others. Personally, I have not been able to tolerate nutritional supplements, but I have received some soothing from apple cider vinegar and Epsom salt soaks on my feet.

The other medication I have used since before being injured by this antibiotic is cannabis. Please follow this link for the recipe I use to replace the Fentanyl and Percocet that doctors had my body dependant upon for seven years. I have been free of opioids for ten years this year. Even in level 8 pain daily, I have found combinations of types of cannabis that work to help manage my pain.IMG_20180209_233946497.jpg

That being said, pain is never gone. Ever. It travels. I’m currently experiencing severe pain in my eyes when I focus. Tendons in the eye, or something else? I’ll go into my reflections on seeing in a future post.  Pain is also currently in my toes and back and knee… not to mention that locked shoulder.

Better not to talk about it.

That is the best way I know to avoid feeling pain: Dissociation. I am a master at that. Or perhaps I should say ‘we are.’ Put the pain in a box and get on with life. My current hobby is Literary Theory class. Although the reading requirements make this eye thing quite annoying. Alas, I will be sharing audiobook resources soon!preview-2.jpeg

It’s now been about 18 months since the first pill and the first symptoms. My physician prescribed a power chair in October due to my frequent falls. In November, on the 23rd, while a fall-detection device was on its way to my home, I had my first major fall, resulting in my left shoulder being frozen.

I’m currently in a portable wheelchair, borrowed, while I await the prescribed power chair on order. I don’t stand up and walk unless I am feeling extraordinarily strong and I have a caregiver by my side to make sure I don’t fall.

When I think back to my life, just 19 months ago… camping with friends by a river in a tent. Something I don’t know if I will ever be able to do again…thanks to an antibiotic taken for a sinus infection.IMG_20170906_171505_253.jpg

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A Bad Drug

When I returned to my home state of Washington in July 2017, my broken, disabled body was less able than it had been in years. My first order of business was to make appointments with both my primary care practitioner and my pulmonologist.  My asthma had been flaring, causing me to spend at least one day in an emergency room each month to seek breathing treatments.Prescription bottle for levofloxacin 10 days and tablets with prednisone tablets

The result of my July visits was a diagnosis of pansinusitis with a complete obfuscation of ALL of my frontal sinuses. My prescriptions for my inhalers were renewed and I received two new prescriptions, one for a steroid, prednisone, to lessen the inflammation inside my sinuses and an antibiotic, levofloxacin, (generic for Levaquin) to clear the infection.

I was staying with a friend to help her pack and clean the house she was vacating and set about taking my first round of tablets hoping for a quick recovery. That night as I scrubbed the driving callus on my right heel that looked worse than it felt, I felt pain in my heel and ankle felt fragile and odd, but I didn’t do anything except note it in my journal.

The next morning, I felt like a train had hit my body and brain.  My brain was confused and every muscle and joint in my body hurt. However, both of my physicians had made a point of telling me that the pansinusitis was “probably causing me considerable system-wide fatigue and pain.” So, I chalked up these symptoms to my body reacting to me stopping long enough to feel it.

preview-4.jpgAs my body seemed to weaken, I was embarrassed at the lack of work I was physically able to complete. It wasn’t like me. Yes, I need to take a lot of breaks, but I am a bit of a perfectionist where it comes to packing and cleaning, and it was taking me hours and hours longer than it should have. I apologized to my friend.

About a month later, I revisited my pulmonologist who saw no improvement in my infection and again prescribed the same combination. Again, I took and finished that ten-day course. But my sinuses were still completely full and now my joint pain was even worse. Then my pulmonologist referred me to an ear, nose and throat specialist who prescribed Prednisone and Levofloxacin for 21 more days.

I couldn’t understand how a longer course of the same antibiotics I had been on was going to do any good, but I acquiesced took the prescribed medication once again.

I will add, when I filled my prescriptions at the Walgreens’s pharmacy, the only thing that was said to me was “do you want me to throw away all these papers,” referring to the medication information in the bag of my prescriptions.

Two days before my 51st birthday, I traveled to my medical clinic for a follow-up appointment with my pulmonologist as well as an appointment with a new primary care provider. I expressed to both physicians that I was experiencing a HUGE amount of pain in my joints and fatigue that caused me to feel like I had been hit by a semi-truck from the moment I woke each and every day. Each of my steps that hit the ground was followed by knives shooting up my heel and the back of my leg, then into my knee and hips. After a few feet of walking, I wanted to cry. The pain and swelling in my hands, wrists, and arms made any household chore next to impossible.

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Braces made by my occupational therapist. I had to remove one brace to take the photo

 

Both mentioned they thought the tendinopathy I was describing and which my primary care provider had examined and verified in my hands, wrists, elbows, knees, and heels could be the reaction for which the Levofloxacin and its entire family of antibiotics was deigned to carry a “black box warning” from the Federal Drug Administration (FDA). A “black box warning” denotes a serious reaction history and a limitation from the FDA in a medication’s usage. In relation to the class of drugs of which Levofloxacin was a member, the warning was issued almost one year to the date of my exposure. It read:
“Because the risk of these serious side effects generally outweighs the benefits for patients with acute bacterial sinusitis, acute exacerbation of chronic bronchitis and uncomplicated urinary tract infections, the FDA has determined that fluoroquinolones should be reserved for use in patients with these conditions who have no alternative treatment options. For some serious bacterial infections, including anthrax, plague, and bacterial pneumonia among others, the benefits of fluoroquinolones outweigh the risks and it is appropriate for them to remain available as a therapeutic option.”preview-3.jpg

My pansinusitis was not anthrax or the plague…however, I have multiple antibiotic allergies and have reacted to many different medications. Due to this fact, my physicians rationalized it would be okay to risk my well-being because of an infection that was not fatal. In fact, I had that same active sinus infection for months before any treatment. However, after the prednisone and levofloxacin, I felt worse than I had EVER felt with the infection.

As days turned into weeks, then months, I started to cry when my feet hit the floor and it was not only not any better than the day before but felt like it had gotten worse. I was no stranger to chronic pain, having been through the gauntlet with chronic pelvic pain for decades and back pain for years. I had written REPORTS about chronic pain and cannabis. I KNEW the timeline of pain. I KNEW when pain becomes chronic, the brain changes. Although my body and brain had already gone through that process for a few injuries, I did NOT want that paradigm to repeat with BODY-WIDE pain!!

My nights were not restful at all. I would roll to one side and my elbow would feel like it was full of glass pieces and if I rolled onto it, they would only go deeper into my flesh… The other elbow was on fire. My wrists and hands swelled making typing insanely difficult as my Master of Arts program began in late November. Although I had some accommodations in place for my previously diagnosed limitations, I found myself utilizing the dictation software. It was frustrating and ineffective, to the point I reached out to an online group for my university and a wonderful undergrad student offered to type my dictation over the phone.

IMG_20150909_123512744For the pain, I was limited to cannabis. I will not use opioids after having been in recovery from them for the last 8 years and the other issues with the other medications prescribed for pain are what caused my physicians to initially recommend cannabis as my medication.

I’ve been working on recipes for topicals and bath bombs with this pain. A foot soak with a tablespoon of cannabis-infused coconut oil and Epsom salt is a good substitute when I don’t know if I can pull myself out of the tub.

I wanted to do something more to assist my own recovery, but I feared to damage my tendons more. I read about microcellular damage inside of my tendons and feared them tearing or worse. I requested physical therapy for my body and occupational therapy for my hands to get me started. My psychotherapist was also used to assist with the mental confusion caused by the medication interaction/injury.  Throughout this last December and January, I had therapy appointments three days a week! Still, every morning, as I put my feet out of bed and onto the floor, the pain would shoot up, and I would cry. Like the mercury in a thermometer that has been placed in boiling water, the pain shot up my heels. Yes, worse again.preview-1.jpg

I was in the middle of my finals week for that first term in my Master of Arts program when I woke up, put my feet on the floor, and …. It was about the same as the previous day. The next day, after my exercises and stretching, it almost felt better. I was reluctant to hope, but I had stopped crying. At this point, it had been over six months since the first prescriptions.

The occupational therapist confirmed the swelling in my forearm and wrist had lessened. Two days later, the physical therapist confirmed that my Achilles’ tendons had more movement. FINALLY!

I’m FINALLY on the road to recovery. I have never developed so much empathy, so quickly, for any group of people. I have many friends who have chronic illnesses that come complete with body-wide intense pain. I wish I didn’t have to know, but I do understand comprehensively at this point. I am looking forward to healing from this injury and spreading the word about this medication and its PAINFUL interaction with prednisone and some people’s chemistries! Levofloxacin is a BAD BAD DRUG!preview-2.jpg