An Open Letter to Eli Lilly and All Patients Affected by Cymbalta’s Withdrawal Symptoms

An Open Letter to Eli Lilly and All Patients Affected by Cymbalta’s Withdrawal Symptoms

By Donna Gregory Burch.

When I started blogging about fibromyalgia, I didn’t know much about Cymbalta (generic name: duloxetine). As a fibromyalgia sufferer, I’d only taken it for two days. My doctor had warned me Cymbalta could have severe side effects, but I was desperate for relief from my fibromyalgia symptoms so I asked him to let me try it. After walking around in a dazed fog with my brain buzzing for two days, I decided Cymbalta wasn’t for me and moved on to trying other treatments.

Donna Gregory Burch

Shortly after starting to publish my weekly fibromyalgia news posts in 2015, I learned thousands of patients were suing Eli Lilly & Company, claiming the drugmaker didn’t fully disclose the severity or frequency of Cymbalta’s withdrawal symptoms. As a former newspaper reporter, I knew this was a big story within the fibromyalgia community, and I published a series of articles on my blog about the lawsuit. As a result of those articles, I’ve been inundated the past two years with emails, blog comments and social media messages from Cymbalta users, many of whom are in the midst of going through withdrawals and are desperate for advice.

I feel helpless when I hear from these people. I used to refer them to the attorneys in the above-mentioned lawsuit, but that suit was settled last year. There’s a potential class-action lawsuit still in the works, but from my understanding, the legal firms involved in this matter have stopped accepting new clients. (If I’m wrong about this, please let me know in the comments!)

When someone contacts me these days about Cymbalta withdrawal, I can only refer them back to their physicians for help. Unfortunately, few physicians know about Cymbalta Discontinuation Syndrome or how to manage withdrawal symptoms if they occur. Because Cymbalta is formulated in 20mg, 30mg and 60mg capsules, physicians generally wean patients by cutting their dosages in half over a few days. For many, this method of weaning is too fast, sending them into withdrawal.

Sadly, a growing number of patients are weaning themselves off of Cymbalta by opening up the capsules and literally counting out the beads inside, reducing the number taken over time. Can you imagine how tedious and time-consuming that must be? But that is what some of these desperate patients are doing in an effort to safely get off of this drug!

I hear from affected patients every single week, and it’s heartbreaking. A few days ago, I received a message from yet another patient who wrote, “I feel like killing myself.” This isn’t the first time I’ve received such an alarming message about Cymbalta, but it was the proverbial straw that broke the camel’s back. This needs to stop! So, I called the U.S. Food and Drug Administration (FDA) to find out what could be done to reduce the number of patients who go through this hell. (More on that later.)

And yes, for these patients, it is hell! If you doubt it, click on any of my Cymbalta articles and read the comments. These patients sometimes describe themselves to me as feeling “psychotic” when they try to wean off of this drug. They often experience something called brain zaps, which essentially feels like a lightning bolt going off inside of their heads. They have dizziness to the point of not being able to stand on their own. They have nausea, headaches, anxiety, nightmares and the list goes on and on. Sometimes these symptoms last for weeks or months. Patients are scared and don’t know if there will be long-term effects. 

These patients will often report their symptoms to their doctors. Frequently, their doctors have never heard of Cymbalta Discontinuation Syndrome and may discount their symptoms as being psychosomatic. Well, there’s a reason why the physicians don’t know about Cymbalta’s high rate of withdrawal symptoms. It’s because Eli Lilly doesn’t disclose the actual rate of withdrawal symptoms within its physician prescribing guide.

Cymbalta’s prescribing guide (see section 5.7) reads, “Following abrupt or tapered discontinuation in adult placebo-controlled clinical trials, the following symptoms occurred at 1 percent or greater and at a significantly higher rate in Cymbalta-treated patients compared to those discontinuing from placebo: dizziness, headache, nausea, diarrhea, paresthesia, irritability, vomiting, insomnia, anxiety, hyperhidrosis and fatigue.”

That “1 percent or greater” figure used by Eli Lilly might be technically accurate, but it’s grossly misleading. Eli Lilly’s own research shows up to 50 percent of patients experience withdrawal symptoms when they discontinue Cymbalta. That’s HALF of patients!

To Eli Lilly & Company:

You should be ashamed of yourselves! By saying in your prescribing guide that “1 percent or greater” of patients have these withdrawal symptoms, physicians infer this is a rare occurrence, and they are not taking proper steps to wean patients off in a slow, deliberate manner to minimize these life-debilitating symptoms.

When I was reporting on the lawsuit, I was hopeful your company would change its prescribing guide to include the true rate of withdrawal symptoms, but that lawsuit has now been settled, and patients are still being harmed. I have had enough and so have the thousands of Cymbalta users who have suffered because the frequency and severity of these withdrawal effects haven’t been properly disclosed.

You need to do the right thing and inform physicians that withdrawal is a common occurrence so they can take steps to protect their patients. Regardless of how it impacts profits, it is the ethical thing to do!

Better yet, conduct research studies on how to safely discontinue Cymbalta, so that physicians have a clinically-proven protocol they can follow for weaning patients. 

To all U.S.-based Cymbalta users who are experiencing or have experienced withdrawal symptoms:

If you’re a patient who had withdrawal symptoms when you stopped taking Cymbalta or the generic, duloxetine, you can report this as an adverse event by visiting the FDA’s MedWatch page and filing a report using the “report a problem” button. If enough Cymbalta/duloxetine users share their experiences with the FDA, then the U.S. government will have to take action. The FDA may be able to prompt Eli Lilly to update their physician’s prescribing guide and/or issue a black box warning on Cymbalta, letting physicians and consumers know about the high rate of withdrawal symptoms.

(Cymbalta users in other countries can contact the appropriate agencies in their own jurisdictions.)

Cymbalta users can also take an active role in this matter by printing off research studies about these withdrawal symptoms and distributing them to their physicians as an educational tool. That may help future patients.

Here are links to three such studies, which show Cymbalta’s high rate of withdrawal symptoms upon discontinuation:

Symptoms following abrupt discontinuation of duloxetine treatment in patients with major depressive disorder

Duloxetine: a review of its use in the treatment of generalized anxiety disorder

Duloxetine 60 mg once daily in the treatment of milder major depressive disorder

Final words

It is not my intent to harm Eli Lilly. Based on clinical studies, Cymbalta is the most effective pharmaceutical treatment for fibromyalgia. There are some in the fibromyalgia community who wish this drug would be pulled off of the market. I am not one of them. I am grateful it’s on the market and is improving the quality of life for some fibromyalgia sufferers. I recognize every drug has pros and cons.

But that being said, patients and physicians need to be educated on this issue so they can make informed decisions about their healthcare. Too many people are having their lives negatively impacted when they try to discontinue this drug. My fellow fibro warriors have enough challenges as it is, and they deserve better!

Now it’s your turn: Have you experienced Cymbalta withdrawal? If so, what was your experience? Please share in the comments below! 

Donna Gregory Burch was diagnosed with fibromyalgia in 2014 after several years of unexplained pain, fatigue and other symptoms. She was later diagnosed with chronic Lyme disease. Donna covers news, treatments, research and practical tips for living better with fibromyalgia and Lyme on her blog, FedUpwithFatigue.com. You can also find her on Facebook and Twitter. Donna is an award-winning journalist whose work has appeared online and in newspapers and magazines throughout Virginia, Delaware and Pennsylvania. She lives in Delaware with her husband and their many fur babies.

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Authored by: Donna Gregory Burch

There are 14 comments for this article
  1. Rich at 3:25 pm

    I took low dose cymbalta for a few days and it was a horrible experience. Sweating, nausea and all the rest. I stopped taking them and gave myself a week or two and tried again. This time it has been a lot easier to get started with the full benefit kicking in after about 2 weeks. I take 60 morning and night to sort my nerve damage. I also must have been a bit depressed as well as I don’t any more.

    I think I eat more and feel sleepier than normal, but I feel painfree and relaxed.

    Just need to worry myself into taking care of myself a little better start jogging again.

  2. Connie at 6:56 pm

    I was on cymbalta and lyrica for less than a week. It caused severe hip pain as well as weird vision changes that I still suffer from after many years! I was told they might make me sleepy! Thank goodness I was on them for such a short time! I will stick with the tried and true opiates as long as I can and then I guess I suffer till I can’t stand it anymore!

  3. Lauren Frauenknecht at 4:18 pm

    I had been on Cymbalta for over 5 years. I had tried twice before to get of the drug but after months of withdrawal symptoms my Dr. put me back on it because I couldn’t handle the withdraw. Last year it started affecting my kidneys so I determined once again to stop the drug. A new Dr. put me on a low dose of Prozac and cut the Cymbalta dose in half for a month. The second month the Prozac was doubled and the Cymbalta cut completely. I spent 3 1/2 months in Pharmacutical hell. I was almost entirely incapacitated as I endured many symptoms far worse that firbromyalgia. In this case the cure was definitely worse than what ails me. The withdrawal symptoms are beginning to subside and I am experiencing more Fibro symptoms than withdrawal. Now I must rebuild my strength and stamina. I don’t have words harsh enough for Ely Lily and I will never take any of their products again. The suffering they have caused me is criminal and I was defensless due to their lack of accurate disclosure.

  4. Michael E. Platt, md at 1:18 pm

    Dear Donna,
    Part of the reason for the severe withdrawal symptoms from Cymbalta is that it is in the NRI (norepinephrine reuptake inhibitor) category of drugs. In other words, it can lead to an increase in adrenaline levels. I am a wellness practitioner who deals with the causation of illness. It is my feeling that one of the causes of fibromyalgia is excess adrenaline. Adrenaline causes the muscles to tense up leading to an increase of lactic acid and hence the pain. Excess adrenaline also causes insomnia, anger issues, anxiety, road rage, IBS, cold hands and teeth, teeth grinding, depression, and even weight gain while people are sleeping. Excess adrenaline can also take away the appetite, and is the cause of cyclical vomiting syndrome. FYI Effexor and WellButrin are also NRI’s.

  5. Karen Prigmore at 11:12 am

    I took it for a long time, and it stopped my hip and leg pain immediately so I was thrilled. But when I had to go off of it, cold turkey, due to insurance changes and increased cost ($900!), it was hell. Brain zaps and a pounding deep inside my ear/brain when I used my phone! Weird, I know! I was also very shaky and sweating a lot. The benefits are great but I’ll never take it again.

  6. JT at 11:11 am

    My husband was taken off Cymbalta ubruptly because his doctor wanted to try some new type of testing that could show which medicines would work best for him. It landed him in the hospital because he thought he would kill himself. He felt so awful that we had family members with him around the clock and then finally, after a week of agony, he checked himself into a hospital. So sad.

  7. David Cole at 10:43 am

    I have peripheral neuropathy, I tried Cymbalta several years ago, I was warned about the side effects and told they would go away after a few days or a week. This [edit] had me all over the place mentally, when I find myself in the bathroom looking in the mirror, I was going to shave my eyebrows off because they just didn’t feel right on my face, luckily I still had some ability to think left and didn’t do it, I never took another Cymbalta pill again, if it helps you that’s wonderful but be very very careful using this drug. I might also add if anybody out there using Lyrica, I was taking 600 mg a day, I was able to withstand the blurred vision the swelled up feet and legs and hands, however that year we changed insurance companies, the new insurance company denied covering the Lyrica, they wanted a pre-authorization from my doctor. I told my doctor I couldn’t afford the $800 a month, he gave me a prescription for Neurontin. However what happened next was Criminal, I started going into fits of Rage, I felt so weird I almost committed suicide ended up in a psychiatrist’s office. I believe the only way I survived coming off of this [edit] was I found a website where people commented on the side effects of coming off of Lyrica, after I read all the horror stories I realized what was happening. It was three weeks before I even begin to feel the effects subsiding, it was about four or five months before I was back to normal. What I’m trying to say is the withdrawal symptoms from Lyrica can kill you. Please be very careful with all these psychobabble drugs. I found opiates alleviated my pain better than any of these psychobabble drugs with very minor side effects other than constipation, I learned how to deal with that, with diet. Now we have government bureaucrats at the CDC FDA and DEA taking away the safest drug I’ve ever taken. Opiates saved my life.

  8. Tim Mason at 9:54 am

    I cannot take any SRI. I tried Cymbalta after saying no because of my experience with Paxil. One single dose of Cymbalta put my head in my lap for three days. I did tolerate Paxil for about 3 weeks but became unable to write my name while checking out of a hotel when I had a traveling job.
    The cheap tried and true drugs are better. Any of the PAMS work wonders.
    I can understand not writing these for a 30 something year old but someone like me with only 8 to 10 years left to live..

  9. Daniel Jeppsson at 11:07 am

    Just pick out the grains from the capsules, then you have solved the problem.

  10. Rhea at 9:32 am

    Yes, it was pure HELL trying to wean myself off of Cymbalta! Nausea, vomiting, sweating, abdominal cramps, extreme anxiety, etc., etc., etc. I literally thought I was going to DIE! I was taking 60 mg/day, and while it was helping the fibro, my doctor wanted to try me on nortripyline (so?). It was so bad, I decided to stay on it instead of changing. Eventually, I was switched to Effexor without any issues. I understand that getting off Effexor is similar to Cymbalta. We deserve better!!!

  11. StevefromMA at 6:35 am

    Like every fibro med I’ve taken, Cymbalta gave me scary side effects with very modest relief, maybe 10%. Fortunately, being in the mental health field, I was familiar with it and approached cautiously and low dose, even cutting lowest dose capsule powder by 50%. Nevertheless, one day I had severe breathing problems while standing downtown so I got off after only a week, no problems. We have to remember that most of these meds barely beat placebo and they should, unfortunately, be regarded as toxic. Add to that that most doctors know very little about meds and their side effects, especially if the are outside their specialty. My urologist recently couldn’t fathom that my Tramadol was not trazadone and that I wasn’t on an antidepressant. Not encouraging.

  12. Cindy Perlin at 6:24 am

    Suicidal thoughts and behaviors are also common when starting or stopping Cymbalta and similar drugs. Some suggestions for withdrawal: A compounding pharmacy can formulate Cymbalta so that it can be more easily gradually reduced. Also, neurofeedback, also known as EEG biofeedback, can greatly reduce withdrawal symptoms, particularly the infralow protocols. See http://www.eeginfo.com for a list of providers.

  13. Alanna Wilgus at 5:52 am

    I took cymbalta for my fibromyalgia a half dozen years ago. On the advice of my physician, I stayed on it for many months, despite it’s lack of efficacy and numerous side effects. Eventually, I decided to discontinue it and for several weeks I thought I had the flu with what I called “brain shivers”. I even consulted my doctor and he reassured me that it had nothing to do with the Cymbalta withdrawal. Being a pharmacist, I knew better. After looking on the internet, I tried the “counting pellets” from inside the capsule to safely lower my dosage. It took me many months to wean down and I will never go back to this dangerous drug.

  14. Rima at 4:19 am

    I took cybalta for 6 weeks. I went back 3 times to my GP I told him I lost my appetite, have the runs. My mood was better my Fibromalyasi pain almost gone but l lost 9 kilos in 6 weeks. He kept saying to me keep taking it till the side effects go. I went back to my specialist and she told me to stop it straight away which I did but I’m still feeling fatigue and having the same symptoms. I took myself to the hospital yesterday and demanded a drip. They did urine and stool test as all my red,white cells,platelets and other but probably due to policythemia. I’m waiting on results still vomiting,and having the runs. The hospital dr wants me to take 6 endone a day which l won’t. I’m on patches anyway. He wants me to sleep 24 hours a day. I’ll wait few more days for the results as I’m on lots of medications. I take more than 40 tablets a day plus inbred injection and patches. I know when l need endone but not that much. Any suggestions please