Welcome to the Duloxetine Diaries. This is the first in a series of articles regarding the prescription medication Duloxetine, the generic version of Cymbalta, which was created by Eli Lilly and Company and approved for treatment of major depression on August 3rd, 2004. Each article will discuss an individual’s Duloxetine journey and combined with research led, data driven facts regarding the history of this medication and how Eli Lilly and Company were able to get through the FDA approval process with shaky clinical trial data and creative wording. We will also discuss how, after 5,000 lawsuits filed against Eli Lilly and Company, Duloxetine remains one of the most prescribed medications in this country today.
Before I begin I would like the reader to be aware of the following statistics: Lilly claimed the withdrawal rate from Duloxetine was 1% when in actuality 44% of trial participants experienced withdrawal symptoms that were moderate to severe. The real withdrawal rate could be as high as 78%
This is my story.
I knew I was pregnant with my daughter a week before I realistically should have. I took a pregnancy test on January 4th, 2019, a full week before I was scheduled to have my period. I did not take the test out of excitement of a pending pregnancy. Even while taking the test, I thought, “Jenna, there is no way you had sex less than three weeks ago and are already pregnant. But it never hurts to practice peeing on sticks. It’s all part of the motherhood journey.” That test came back positive, so I took three more. All positive. I was pregnant.
In all honesty I took the test so early because something in my body felt 'off'. I was sad and had feelings of hopelessness, symptoms which came on almost overnight. During this time, I remember preparing for my Nicolas Cage themed 34th birthday party and wondering why the giant cutout of Mr. Cage in my living room was not making me squeal in delight as it normally would. A Nicolas Cage cake would have made me guffaw in previous instances, but in January of 2019, even Mr. Cage in frosting form could not lift my spirits.
I hit 'the Google' for some tangential research (prepartum or peripartum depression is not the focus of this piece so I did not dig deeply) but could not nail down specifics on what causes depression during pregnancy. There was of conjecture about lifestyle, anxiety about a new baby, and hormonal changes.
While I could not easily find details on the chemical changes within the brain during pregnancy, I personally felt my prepartum depression was related to the hormonal shift in my body. I was depressed for the entire first trimester. When I spoke with my OB-GYN, she explained that prepartum depression was not entirely uncommon. Her solution was to provide me with a resource for one specialized postpartum therapist who did not take insurance and cost upwards of $350 an hour. She also recommended an in-person support group which met on Tuesday at 10am also for postpartum.
I worked a 9am-5pm corporate job and could not attend this group, I also did not have a baby yet. Resources, directly in the trashcan.
Quite literally the day I entered my second trimester, a light switch went off and I was OK. The depression lifted, and I coasted the rest of my pregnancy in cute outfits and constant compliments from strangers. While I was glad to feel like myself again, I was acutely aware that if I had prepartum depression, there was a chance I was going to have postpartum depression.
My partner and I did the best we could to mitigate potential triggers for PPD. I actively chose not to breastfeed and hired a night nanny for the first two months of my daughter’s life. Our thought process was that if I could sleep, I could handle anything.
For the first eight weeks after my daughter arrived I felt mostly ok. Sure, there was the hormone drop, but I was prepared, and I knew it was temporary. Once that feeling subsided I convinced myself that I had bypassed postpartum depression. Incorrect, but man I sure was hopeful back then!
When Poppy was eight weeks old, our first week solo sans night nanny, I slipped taking her out of the bathtub. I instinctually protected my baby (I was pleased at the instinct. I would have felt bad if I chucked her to protect myself. Look at me mommin’) and took the full brunt of the fall on my elbow, which I fractured.
I had an eight-week-old and a fractured elbow. My partner took the next week off of work to help me, but after that point, I was on my own from 8:30am-5:30pm. Every time I held my daughter it hurt. Every time I fed her it hurt. I started to associate my baby with pain and quickly spiraled into a depressive state that I could not crawl out of. I knew the symptoms and it was time for me to get help.
In January of 2020, two weeks before the end of maternity leave, I walked into the office of Clown Shoes, MS, BSN, PMHNP-BC (After consulting with a lawyer, I was advised to redact the names of my providers to prevent potential legal issues. However, there was no requirement to create a fictitious positive name in the process) with symptoms of postpartum depression. She spent less than forty five minutes with me, instructed me to take a genetic test to see how I metabolized psychiatric medicine and sent me on my way.
The test revealed that I process Serotonin and norepinephrine reuptake inhibitors (SNRI) quickly, so she started me on 20mg of Duloxetine, the generic version of Cymbalta with the goal of getting up to 40mg (more on why that was a REALLY BAD IDEA in a later article.) Clown Shoes and I met in person maybe three other times before I received the following email in November of 2021.
Clown Shoes CRNP-PMH
Dear Jenna Liu, 11-7-2020
It has been my pleasure to be your mental health provider for the past 5 years and work closely with (redacted.) and the four wonderful psychotherapists in our office. I recently
started a full-time position at the (redacted) in September. While I have mixed feelings about cutting back at (redacted) practice and working with you, I am excited to be the first psychiatric nurse practitioner hired to work at the clinic. I was hoping to provide my private practice clients appointments on Sundays. However, I am finding I am working 7 days a week and I need to cut back.
To provide you with continued high-quality care, I will refer you to (redacted) who has agreed to cover or take over your care. In addition, my student, (redacted), who many of you know, is now a board-certified nurse practitioner and will be joining the practice as soon her insurance credentialing is complete and will be able to see clients if (redacted) cannot see you on a permanent basis. Alternatively, you may choose a provider from your insurance provider list. If you need a medication refill until you can schedule with (redacted) I will be available to help.
I will miss working with you and wish you the best health. For those of you who have outstanding bills, this letter does not free you from paying for previous visits with me. Please settle you accounts with (redacted) before making your next appointment.
Clown Shoes, MS, BSN, CRNP-PMH
The doctor she referred me to did not take insurance. Neither did the Nurse Practitioner at the time. She dropped her patients on dangerous medications with no real resources to help. I left her care with my 90-day supply of Duloxetine and quickly found another provider through my insurance to be able to continue my prescription.
There was an instance or two where I skipped a dose, either because there was a short supply of medicine at the pharmacy, or I forgot to bring them on an evening away. This was the first experience I had with the side effects of withdrawal. It was never disclosed during treatment what would happen if I missed a dose or decided it was time to stop the medication.
The new doctor I found through insurance, Dr. Ima Joke McGee, was negligent (in my personal and not professional opinion) Full transparency, she was the ONLY doctor to call me back from the ten to fifteen doctors I left messages for. Finding a mental health professional who takes insurance is a marathon, not a sprint.
Dr. Ima Joke, as she liked to be called, would require me to have a virtual meeting or phone call with her monthly to prescribe a 30-day supply of pills. Scheduling a two minute call every month for a 30-day supply was causing me anxiety, but when I would ask for a 90-day script she said my insurance would not allow it and I needed monthly medication management calls to continue my medicine. I called insurance to check, and they covered a 90-day supply if that was how the script was written, but Ima Joke fought me on it until I no longer saw her as a doctor.
What Ima Joke was doing was holding my medicine hostage so I would be forced to have a two-minute phone call with her, afterwards she would bill my insurance for a full session of $175. Her requirement to chat with me every three to four weeks was causing me undue stress. There were several times where there was a short supply of Duloxetine at the pharmacy, which meant I was frequently faced with the potential of missing doses and getting really overwhelmed with the prospect of withdrawal. I just wanted a 90-day supply, so I did not feel the crushing wave of fear of being without, but her interest was billable hours and not patient care. There are a lot of amazing doctors out there, but there are a lot of awful ones too.
After about a year of being on the medicine I felt like it stopped working and started to feel depressed again. Dr. Ima Joke upped my dosage from 40mg to 60mg, and then when it still was not working from 60mg to 80mg. At 80mg Duloxetine was doing more harm than good. My moods were becoming harder to control, I would have two glasses of wine and become blackout drunk. I started to feel episodes of mania that I had not experienced prior to the medicine. I decided that it was time for me to stop.
In November of 2021, I informed Doctor Ima Joke that I was ready to wean off Duloxetine. Her instructions were to Drop from 80mg to 60mg one week, and then 60mg to 40mg the next. Researching after the fact, this instruction (again personal and not professional opinion) was beyond negligent.
The month of December 2021 was the worst month of my entire life. I was in full mania and could not get into my vehicle without thinking about crashing my car into a tree. I am not suicidal and at the time said out loud to no one “What the actual f*ck Jenna? Get out of the car right now.”
My partner was going to leave me, and I do not blame him. I was not a safe person to be around. Not safe for me, for him, or for our daughter. Neither of us understood what was happening, and I started to think, maybe I needed the high dose of Duloxetine. I would tell myself, “Maybe having a baby made me bi-polar. What else could be causing this to happen inside my brain?” I also had what I now know are the telltale signs of antidepressant withdrawal: Brain Zaps. There is no medical term to describe Brain Zaps, but what it feels like is an electric shock from your head to your feet. Occasionally a Zap (such a cute name for something really ugly) would cause me too briefly black out. During withdrawal had those zippity zaps once every three to four minutes for three weeks. I did a little research on brain zaps and the NIH says, 'ehh we don’t know and should do more research.'
During this time, I luckily got COVID. I say lucky because I needed to be locked away until I normalized. I did not know sequestering was what I needed, but I’m grateful for COVID in that one instance. It was Christmas week, and I was hiding in a room upstairs alone. I gained twenty five pounds in that one-week period because I had no outlet for my mania other than Door Dashing ice cream. I could not taste any food but would not stop eating. December 27th, 2021, I broke a plate in the kitchen and started using it to cut into my arms. My husband was going to call 911 and have me committed. It was a horror movie, and I was living it. I was the monster.
Then, one morning, I woke up and like that light switch as I entered the second trimester, felt stable. I waited to see when I would feel manic again, but after three weeks the mania did not return. That is when I started to do research, which I should have done from the beginning.
I was not alone. My symptoms were a common occurrence for individuals withdrawing from SNRI’s. I found a support group online called Cymbalta Hurts Worse. I learned that the way my doctor instructed me to wean was dangerous. Many people crack open the pills and count out or weigh individual beads of medicine inside them because withdrawal is so intense. Removing one bead week by week, and my doctor told me to Drop 40mg in two. I was angry. Not just angry but REALLY F*CKING ANGRY.
So, research in hand, I was still on 40mg daily. I no longer wanted the poison in my body but was too traumatized to stop taking it the rest of the way to stop completely.
Over the next year, I went from 40mg to 30mg because the pharmacy was backordered on 40’s. That drop was manageable because I knew what to look for and my partner really took over childcare. Then I dropped from 30mg to 20mg for the same backorder reason. Another unpleasant month in my life. I was on 20mg for several months before my partner said, “It’s time for you to stop this.” So I buckled up, dropped from 20mg to 0 (because no one makes 10’s and I did not think I could emotionally handle counting beads) and enjoyed the roller coaster that was December of 2022.
Luckily during this time, I discovered micro-dosing psilocybin, which helped me beyond measure with controlling my mood and the brain zaps. I would take a microdose pill in the morning, and the zaps would subside for four hours. When they came back, I did it again. This is not a medical recommendation, and anything taken for withdrawal should be discussed with a healthcare professional.
I am deeply appreciative of Mary C. Suntum, CRNP - my long time primary care provider in Columbia Maryland. Once I parted ways with Ima Joke, Mary both listened to my story without judgement, and along with a much-needed hug, provided me with a full year’s supply of Duloxetine refills so I could safely taper down on my own time. I took my last 20mg pill on December 1st, 2022, and returned the unused pills to the pharmacy for disposal.
It has been eight months since I stopped taking Duloxetine, but the damage of that experience has lasting effects. I was, and am still scared of my own brain. I am waiting for the stability I feel to fall away and to be sucked back into the madness of mania.
In March of 2023, I wrote to both Clown Shoes and Ima Joke McGee (The content of my email is quite similar to what is presented here.) I would like for you to see their responses in case you ever come across them as a potential doctor. I would hard pass them.
I am so sorry that you are angry. I appreciate your feedback.
I wish you continued health.
If you recall, you abruptly stopped/cut back on your Dose without you letting me know. You told me this when you reschedule and I educated you about it 12/17/2021. I told you it is not safe to abruptly stop taking hence we started the weaning process. You pushed to cut back drastically but I told you it has to be gradually tapered. Since I started seeing you I have not received any copayments from you. It is okay if you find another provider but understand I wish you well. -Ima Joke
I’d like to remind you that these are licensed medical professionals. The only issue with Ima Joke’s attempt to gaslight me is my partner was in the car on speaker when I first discussed the weaning process. I brought this up to her in November 2021, the week before Thanksgiving.
In research of this article, I logged into my two previous insurance accounts. Ima Joke billed Blue Cross four times each for $175 in 2021. These were those two-minute ‘medication management appointments.” After switching insurance to Aetna in January of 2022, she did not bill my insurance once. She may have meant to submit but when I threatened to report her, decided against it.
On February 11th I received a text message from her saying I owe $200 in co-pays which she instructed me to pay over Zelle. These included appointments she did not bill to insurance. It’s kind of confusing, but also kind of shady. I told her that if she wanted me to pay the prior co-pays send me an invoice, like a traditional medical provider. I terminated our relationship March 1st of 2022, I have yet to receive an invoice for my past due co-pays.
She never billed Aetna for the two appointments I had in January of February of 2022.
This is my story, but it is not the only story. In 2020, the year I was prescribed Duloxetine, there were 22,546,920 prescriptions written to 4,461,604 patients. That’s an estimated (based on the same data) $226 per year per patient, or 1 billion in revenue yearly for the 21 pharmaceutical companies approved by the FDA who produce the medicine.
Now, I need your help. If you want this story told and want to be a part of the mission to create actual change in how Duloxetine is prescribed, consider donating to the Duloxetine Diaries' Patreon. This series aims to educate the public and medical community and advocate for legislation mandating detailed explanation of serious risks linked to tapering off antidepressants. It also seeks to make patient understanding explicit through signed acknowledgment before medication prescription.
If you are a current or former Duloxetine patient and want to tell your story, please email firstname.lastname@example.org