09.24.2015

Quitting Cymbalta? What you need to know before you take that last pill

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Note: “Quitting Cymbalta” is Part 1 in an ongoing series on Cymbalta’s withdrawal symptoms. Part 2 includes an interview with Baum, Hedlund, Aristei & Goldman, PC, one of the law firms representing hundreds of patients who have been affected by Cymbalta’s withdrawal symptoms. Part 3 is a timeline of the lawsuits and summarizes the cases that have been heard so far and their outcomes.

As always, I’ll post any news related to the lawsuits in my fibromyalgia news updates. To make things easy, I’ve created a page dedicated to the lawsuits where you’ll find all of FedUpwithFatigue’s Cymbalta posts, links to national media stories and other useful information. I’ll be covering these lawsuits as they unfold. Please consider subscribing (there are forms at the top of the page and the bottom of this post) to receive the latest updates.

Update 10/25/16: The Cymbalta lawsuits have been settled. Click here for details. 

Quitting Cymbalta? What you need to know before you take that last pill

Over the past few weeks, I’ve been sharing links in my fibromyalgia news posts on the recent Cymbalta lawsuits. In case you haven’t heard, more than 200 patients are suing Eli Lilly & Company, claiming the drugmaker didn’t fully disclose the severity of Cymbalta’s withdrawal symptoms. The plaintiffs in the cases say they experienced headaches, dizziness, nausea, nightmares, anxiety, mania, suicidal ideation, brain zaps (which feel like a lightning bolt going off inside the head) and other symptoms after they stopped taking Cymbalta.

Since learning about the lawsuits, I’ve also read several Facebook posts from fellow fibromites that usually go something like this: “I just stopped taking Cymbalta, and I’m feeling [fill in the blank with a troubling symptom]….”

Shockingly, a lot of these people say their doctors told them to “just stop taking the Cymbalta.” If their doctors happened to tell them to wean off, most were instructed to do so over a week or two.

Apparently, there are a lot of doctors out there who are pretty clueless about Cymbalta’s withdrawal symptoms. And if the doctors aren’t informed, how are we, the patients, supposed to be?

I’ve seen so many of these “I just stopped taking Cymbalta …” situations lately that I decided I wanted to do a post on Cymbalta’s withdrawal symptoms. My hope is that Cymbalta users will read this and use caution when and if they ever decide to stop taking it.

I want to preface the data below by saying I am not anti-Cymbalta in any way. I know it’s helped many, many people with fibromyalgia. Out of the three drugs currently approved by the U.S. Food and Drug Administration to treat fibromyalgia, Cymbalta is actually the most effective. And it’s also the most affordable fibro drug because there’s a generic version.

I know Cymbalta is a godsend for some fibromyalgia patients, but others, like Cherie McEwen and Lori Peterson, have had difficulties coming off of it.

Cherie shares, “When it went to the point of not taking it at all, I felt like a true junkie. I had the cold sweats, I had the hot sweats, I had the brain zaps. I went through four months of that in varying degrees every day. It took me close to two years to stop feeling things. I thought this is never going to end.” 

And Lori says, “I reduced the dosage of Cymbalta, and then stopped. … After a couple days, I could not sit up. If I tried to sit up, my head was spinning so bad that I would just fall over. I needed help getting to the bathroom and back. I laid on the couch for one week, not able to stand by myself.” 

Cherie and Lori aren’t alone in their experiences.

As early as 2005, research indicated a high rate of what medical professionals call “adverse events” when patients stopped taking Cymbalta. This Eli Lilly study found that 44 percent of patients involved in several short-term trials had “adverse events” when they suddenly stopped taking duloxetine (the generic name for Cymbalta). The most common withdrawal symptoms cited were dizziness, nausea, headache, paresthesia (tingling/numbness, usually in the limbs), vomiting, irritability and nightmares. About 10 percent of these patients had “severe” withdrawal symptoms.

A longer and larger Eli Lilly trial involving 1,279 patients found that 51 percent of patients experienced withdrawal symptoms.

Given the results of these studies, you’d think that doctors would be aware of Cymbalta’s withdrawal symptoms, so they can inform their patients, right?

Not really. And there’s a good reason for this.

If you pull up the physicians’ prescribing guide for Cymbalta on Eli Lilly’s website, and read the section entitled “discontinuation of treatment with Cymbalta,” here’s what it says: “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.”

Did you catch the discrepancy?

The Eli Lilly studies say these symptoms happen in 44-51 percent of patients, but Cymbalta’s prescribing guide says they occur in “1 percent or greater” of patients. Well, Eli Lilly is TECHNICALLY correct when it says “1 percent or greater,” but if the company was being transparent, shouldn’t it have included the 44-51 percent figures in its prescribing guide?

Shouldn’t doctors be made aware that 44-51 percent of their Cymbalta patients are going to feel like crap if they suddenly stop taking it? Wouldn’t you want YOUR DOCTOR to know that, so that he could warn you and wean you off of the medication slowly to minimize those bad symptoms?

That argument is part of the ongoing Cymbalta lawsuits. The plaintiffs claim Eli Lilly has deliberately withheld information about Cymbalta’s high rate of withdrawal symptoms, jeopardizing patient health.

This isn’t the first time that claim has been made. In 2012, the nonprofit Institute for Safe Medication Practices was critical of Eli Lilly and the FDA (see page 11), essentially saying both parties were lax in educating physicians and patients on what can happen when patients stop Cymbalta suddenly or don’t wean off at a slow enough rate.

“Lilly’s response may well be limited because neither the company nor the government has adequately studied how to discontinue patients comfortably and safely, or how to manage those patients in which withdrawal symptoms are severe or persistent,” reads the Institute’s quarterly report.

In other words, they haven’t told doctors how to wean patients off Cymbalta the correct way because they haven’t done the research to figure out what the correct way is in the first place!

The physicians’ prescribing guide does say that “a gradual reduction in the dose rather than abrupt cessation is recommended whenever possible,” but it doesn’t give specifics on the best way to wean someone off of Cymbalta. For that, physicians are basically left to figure it out on their own.

After identifying this lack of critical information, the Institute does recommend several journal articles and books to assist in the weaning process.

“Psychiatrist Joseph Glenmullen provides a step-by-step guide in his book, ‘The Antidepressant Solution.’ His tapering regime is tailored to the drug dose and the severity and persistence of the side effects. For duloxetine, tapering would typically last eight to 30 weeks, but could last even longer in severe cases,” reads the Institute’s report.

Baum, Hedlund, Aristei, Goldman PC, one of the law firms representing the patients who are suing Eli Lilly, is also trying to do its part by including a webpage of links with information on Cymbalta withdrawal.

The design and dosages of Cymbalta’s capsules make it challenging for patients to wean. Capsules come in 20mg, 30mg and 60mg strengths, meaning patients sometimes have to cut their doses in half while weaning. I’ve heard countless patients say the 50 percent jump is just too much of a reduction at one time.

So, some patients are quitting Cymbalta by dumping the contents of the capsules and then COUNTING out the tiny balls every day in an effort to slowly reduce their dosage over time. I can only imagine who tedious and time-consuming this is, but it seems to be the best way some patients have found to reduce their withdrawal symptoms.

Here’s the part of the post where I would usually tell my readers to “talk with your doctor.”

But I think in this case, I have to add a caveat: Educate yourself first before you talk to your doctor. There are just too many doctors out there who are clueless about Cymbalta’s withdrawal symptoms … too many who tell their patients to “just stop taking the Cymbalta,” or who wean their patients off too quickly – both of which can have harmful results.

Sadly, I think this is going to be another of those situations where we, as patients, may end up knowing more about this issue than our doctors do.

Something needs to change. Doctors and patients need to have clear instructions on the proper way to stop Cymbalta to minimize withdrawal symptoms as much as possible. I’m hoping the Cymbalta lawsuits will help to make that happen.

Have you experienced Cymbalta withdrawal? Feel free to share your experience in the comments below.

If you enjoyed this post on quitting Cymbalta, then you might also like …

What you need to know about the Cymbalta withdrawal lawsuits – This is a special page that I’ve dedicated to the lawsuits. It includes links to all of FedUpwithFatigue’s Cymbalta posts, news stories, support groups, attorney information and much more!

Thousands of former Cymbalta users are suing Eli Lilly & Company, claiming the drugmaker didn’t fully disclose the severity and frequency of the drug’s withdrawal symptoms. Find out what you need to know about the lawsuits here.

Cymbalta’s withdrawal symptoms prompt lawsuits – A good overview of Cymbalta’s withdrawal symptoms and the lawsuits.

Thousands of Cymbalta users are suing drugmaker Eli Lilly, claiming the company wasn't forthcoming about the frequency or severity of the drug's withdrawal symptoms. | Fed Up with Fatigue

Update 10/25/16: The Cymbalta lawsuits have been settled. Click here for details. 

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Comments

  1. stephanie says:

    I have been on Cymbalta for almost 10 years. I had post partum depression/clinical depression/anxiety and lost my mother. I was on it not long after it was out. Today I had my doc call in the 30 mg (I am on 60) I want to get away from this- after awhile you go numb-not just from what happens in your life- but I believe this med has a LOT to do with it. there are no emotions. so fingers crossed- when I begin to alternate that my brain will NOT flip out. I’ve had brain zaps before from migraines and blood pressure- so I know those are looming. nice to know I will not be alone in this.

  2. carmen reynolds says:

    Brain Zaps, Thats a great way to describe it. I’ve tried to explain it to my husband and didn’t know how. It is the weirdest feeling. Though Fibro gives you many weird feelings I think this is the worst. I’m scared I will have a stroke or aneurysm. This is the only med that has helped but if I forget a few days or forget to refill it’s pure hell.

    • Carmen, I too have had trouble explaining”brain zaps”. Unfortunately when I run out, it’s usually because I have to get a new prescription and while my Dr. Would fill it without a problem, getting through the Receptionists and Nurses who insist that I have to come in , well if I don’t have the money for both coming in and the meds, they just let me go without and don’t even notify my Dr. It’s pure Hell for sure!

  3. Kay Kelly says:

    Thank you, thank you, for letting me know that I am not crazy! And for confirming the lack of info available to doctors. My internist put me on 30 mg duloxetine in Sept ’14. The first 6 months were great — decreased joint pain and soreness, plus an uptick in just plain feeling better. By Jan ’16 several things started to happen: much increased sweating, increased frequency and level of fibro episodes, and insomnia. In June ’16 I told my internist that I wanted off the drug immediately and queried what withdrawal might be like. His recommendation was to double the dose, but if I wouldn’t do that, then I could just stop the drug because I was taking such a small dose. Well…. I did stop it and spent the worst 6 weeks imaginable dealing with increased pain, horrid nightmares, suicidal thoughts, paranoia, nonstop crying, panic attacks, sweating, hot and cold chills, extreme headaches, becoming bedridden for almost a week, and literally unable to remember much of that time period. I am much better now, but still very angry and disappointed at the poor info given to me. I have given written testimony to my doc and he has very honestly admitted that he had no idea about the consequences of taking Cymbalta/duloxetine, no matter how small the dose. If I had better notes on my withdrawal symptoms I would join the lawsuit.

    • Donna Gregory/FedUpwithFatigue.com says:

      I’m so sorry you had to go through that. Unfortunately as you can tell from the other comments, your experience is not rare. I wish physicians were better educated about the issue w/ withdrawals.

  4. Pam O'Grady says:

    I’ve been taking Cymbalta (now duloxetine ) for 10 years. It really works for me –I only take 60mg and 75mg of Lyrica two times a day for Fibro. I truly think it has kept me feeling good most of the time. Of course I’ve had flare ups but usually do to stress. The worse pain I have is due to no cartilage in either of my shoulders–it goes down both arms and into my hands–helped along by arthritis 🙁 I would like to know if there are reasons I should ditch the duloxetine or stay on it? What are the bad things it’s doing to me–of course my MD is clueless so no point in asking him. I would like to hear from you. As an afterthought– I was experiencing lighting strike pain in the side of my head–doc. didn’t know said maybe I had an inner ear problem–the strikes are almost gone now–but scary none the less.

    • Donna Gregory/FedUpwithFatigue.com says:

      Hi Pam, I’m not a medical professional, so I cannot comment on what effect, if any, Cymbalta is having on your body. I do know that Cymbalta is helpful for many people w/ fibro, and when issues do arise, they seem to occur when people are trying to stop Cymbalta. The “lightning strike” you refer to is probably what’s called a brain zap. Those seem to be one of Cymbalta’s side effects, both in people who are currently taking it and people are trying to stop taking it.

      • Linda Hall says:

        I take Cymbalta and have complained of the “brain zap” for several years. I reference to a bug zapper affect. My Neurologist just looks at me as if I am crazy. Well now I know I’m not…not that I like the fact it is happening to others…but at least I know I’m not crazy!

        • Donna Gregory/FedUpwithFatigue.com says:

          No, you’re not crazy. The brain zaps have been reported in patients who are currently taking Cymbalta and those who are withdrawing from it.

  5. Julie says:

    Hi I was also on Cymbalta for 8 years for Fibromyalgia I was taking 90mg at first then I went down to 60mg I got very dizzy. nausea very irritable and doing a lot of crying. I continued taking the 60mg. up until September of 2015. I had come of them very slow over 4 months and I still had withdrawal’s doing it that slow. I have taking a lot of different prescription med’s nothing worked for me for my chronic pain and fatigue.

  6. Leslie granger says:

    I was on the duloxetine and I seriously thought I was gonna die I had tremors I was hallucinating seen my heater vent on my kitchen wall turn sideways n than I was always sick feeling n than headaches nonstop dizzy spells that were from hell and nausea I literally went and bought a pregnancy test bc I thought I was pregnant and I didn’t dare eat anything was too sick I lost like three pounds bc of that one week of the duloxetine n I’m not complaining about the weight bc that’s no big deal just wished it was a better way so never again will I take the duloxetine especially when I was hallucinating I sat down on my kitchen floor and my 5 year old daughter says mommy are you okay scary thought

  7. I took cymbalta several years ago after several orthopedic surgeries. It was so expensive, I got off of it as soon as I was able. Then I was diagnosed with Fibro and chronic fatigue syndrome. I took the generic. I was in bed for almost 3 1/2 years. I literally had to crawl to the bathroom or use a walker. Last year I started taking supplements and energy products especially for fibro patients. It took several months of taking them but finally I was able to get up and out. Which helped me to lose 60 lbs of weight put on while immobile. I asked my Dr about getting off the cymbalta. He said to do it gradually. So over 30 days I gradually took it less. Every other day, to every three days, to every four days, until my pills were gone. The only side effect, and it could possibly be something else, is a dull headache. I rarely ever have a headache. But my Dr.was very adamant about GRADUALLY stopping. I still have chronic pain and fatigue and a lot of sleepless nights but not as severe as before. I’m gradually getting off all prescription meds, if possible. I’ve had no problems with them but too many people are having problems later because of them, or dying.

  8. Kristi says:

    I run one of the largest RA support groups on Facebook. Fibromyalgia generally coincides with auotimmune diseases. I have been warning my members about Cymbalta ever since I started the group almost 4 years ago. I have never taken Cymbalta but am fully aware of the withdrawals that happen once stopping this medication. I have heard from people who cannot even get off of Cymbalta because the withdrawals are so severe. As a disabled RN, I try to warn people whenever a post is made about Cymbalta. These withdrawal symptoms absolutely amaze me when I chat with members about what they have gone through. It is truly sad how misleading these pharmaceutical companies lead you to believe things about medications. I look forward to your updates regarding the lawsuit!

  9. Teresa says:

    I took my last cymbalta 9 days ago.I tapered off a long term 120mg dose.I cut from that to 60 ,mg and that was bearable.then after 2 -3 weeks went from 60 to 30mg.Again that was bearable.The next and final drop was to take 30mg every other day for a fortnight then stop.What an utterly dreadful experience this has been.Chills,sweats,nausea and awful joint pain.fatigue like nothing I’ve ever known.weepiness.hyper sensitive to noise.irritability.Throw in a flare up in IBS symptoms and trouble staying asleep and that is the misery that is Cymbalta.I have tapered off of prozac,seroxat and valium and also detoxed off of alcohol and they fade into insignificance.Why come off it? A positive change in my circumstances and a new supportive partner.a lack of sex drive and that plateau feeling where nothing seems to provoke any kind of reaction.I needed it at the time.It was pretty good for side effects.most sssri drugs made me sweat and put on weight.these didn’t.I am frightened.I feel ill and I feel sad and I feel anxious and vulnerable.how long will it last? my dr said there symptoms of discontinuation peak after four days then improve.not the case at all!! any advice to help ease the misery.I feel like going to bed and staying there indefinitely!

    • Donna Gregory/FedUpwithFatigue.com says:

      I wish I had good news for you, but some people feel withdrawal symptoms for months. What you’re going through is classic Cymbalta withdrawal. I would recommend joining the Cymbalta Hurts Worse group on facebook for support and info on how to reduce your withdrawals. There are many there who have or are going through the same thing. I’m so sorry you’re having to experience this. Unfortunately many doctors do not know about Cymbalta withdrawal symptom and there isn’t a good way to wean off b/c of how Cymbalta’s capsules are manufactured. In order to wean slowly enough to minimize symptoms as much as possible, some people are opening the capsules and counting out the balls inside and then reducing the number of balls by just a few every few days. It’s the best way people have found to wean to minimize withdrawal symptoms. There’s more info on this method available through the Cymbalta Hurts Worse group, in case you want to resume the medication and try to wean more slowly.

    • Linda says:

      Teresa, I went through the same thing you’re going through. If you can miss work, stay in bed, comfortable, dark and just get through it. That’s all you can do. I’m thinking you have a few days more to go and then you’re going to start feeling better. If you do think about suicide, call a friend, hug your dog (or cat) and tell yourself the feelings aren’t really you, but the Cymbalta leaving your body. Good luck.

  10. Erica says:

    My story varies slightly. I had to find a new MD when I moved to the city. My new insurance required the prescription to be 90 day supply for the cymbalta 60mg. Because I have Ehler/danlos syndrome, my new PCP wanted me to see the rheumatologist before writing a 90day Rx. So, between, getting the insurance company to understand, the PCP and the rheumatologist appointment, I was out of medication for a month!! I had the WORST withdrawal symptoms imaginable! I would sweat profusely, constant nausea, agitated and the worst insomnia! My boss actually took me aside and asked me if I was doing drugs!!! I had to explain the fiasco with my meds and the withdrawals I was experiencing. THEN, when I restarted, I puked the first 3 days I took it! Now I’m scared of the Cymbalta! 🙁

    • Donna Gregory/FedUpwithFatigue.com says:

      I’m so sorry to hear that. It sounds like you went through quite an ordeal. I wish I could say that your story is unique, but since starting to cover the Cymbalta lawsuits on my site, I keep hearing similar stories over and over again. 🙁

  11. I am extra sensitive both when starting a medication and when stopping it. I have been on Cymbalta for almost three years. It was prescribed for depression, I did not have fibro then. I was diagnosed recently and I guess it is not helping me for fibro because of the amount of pain I am experiencing. About a year ago, I went from 120 to 90. That’s all, I wasn’t quitting and I remain on that dose today. I had serious withdrawal just lowering the dose. The worst symptoms were the head “zaps.” If I turned my head too fast, such as backing up in my car and I look back, It felt like my head turned by my brain did not. It would eventually catch up, but everything others here said happened just from a reduction. I’m scared to death to ever wean completely off.

    • admin says:

      I have heard similar stories from others who experienced withdrawals just from reducing dose. This has affected so many people. 🙁

  12. Just wanted to state that when I quit taking Cymbalta I had an episode of being really dizzy and come to find out my blood pressure had dropped to 70/40 and I ended up in the ER.

    • Sorry to hear that. I have heard from several Cymbalta patients who have had issues with dizziness when they quit.

      • Toni Finn says:

        Cymbalta what can I say, the most horrific expierence of my life. Still a year after coming off it I suffer side effects. The side effects through withdrawals is beyond anything I have ever experienced. From close to taking my own life on many occasions to being paralyzed in the legs for 2 months to many more side effects. It is dangerous and I hope one day I can live without the pain it has left me with.

        • Donna Gregory/FedUpwithFatigue.com says:

          Hi Toni, I’m so sorry to read about your experience. If you’ve read the other comments, then you know you are not alone. I wish your experience was unique, but it is not. I’ve had so many people share their horror stories w/ me since I started to cover the lawsuits on my site.

  13. Janet L Lentz says:

    I was on 90mg Cymbalta for fibromyalgia. This helped ease my pain very well. After being on this medication for quite some time I could no longer afford it. I tried to wean off but the Dr only said to go every other day and then every two days.
    When I no longer had the medication to take I began to experience terrible withdrawal. I became VERY depressed and had suicidal thoughts which I had never experienced before. It was very frightening for myself and my family. I was in bed nearly all the time due to increased pain and suicidal thoughts. My family tried to find a way to get me this medication but were not successful. The suicidal thoughts didn’t end for months. While the medication is great, the side effects are horrible!

    • admin says:

      I’m sorry to hear this. I keep hearing stories like this over and over. I’m glad you’ve finally been able to get off of it and are feeling better.

  14. I was on I think 150mg cymbalta (bear with me i now suffer poor memory)but deffo highest dose for many years I stopped taking them no weaning mine was given for depression .. for 2 weeks I have no recollection of days or nights I scarily remember such severe pain in my head .. I am told I was screaming in pain could not physically get out of bed hot sweats shivers nausea sick wanted to end my life ! the list is endless .. it was likened to being a heroin addict doing cold turkey !!! For months after I was often dizzy disorientated n sudden pain zapping in my brain n still get them zaps even now 5 yrs later !! .. I’ve now been diagnosed with ME/CFS & awaiting confirmation of fibro …. I would never of my life depended on it take that vile poison again because at some point it stops working and u have to stop taking them … let alone what the chemicals in there do to your liver kidneys n body full stop ..

    • admin says:

      I’m sorry that you went through that. Unfortunately, I keep hearing more and more stories like yours. The analogy to being a “heroin addict” is very, very common. I hope you’re doing better. Sending positive thoughts your way.

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