06.26.2017

An open letter to Eli Lilly and all patients affected by Cymbalta’s withdrawal symptoms

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This article was originally published on NationalPainReport.com. It is being republished here with permission from my editor. 

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.

Did you experience Cymbalta's withdrawal symptoms? If so, you can report your experience to the U.S. Food and Drug Administration. Here's how!

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, telling me, “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” and suicidal 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. (Yes, realistically, I know this will likely never happen.)

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 to the FDA by visiting the 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!

You might also like…Eli Lilly and Company has settled hundreds of lawsuits involving patients who claim the drugmaker was not forthcoming about the severity of Cymbalta's withdrawal symptoms.

Click here to visit my Cymbalta resources page, which includes all of FedUpwithFatigue’s posts about the withdrawal symptoms and subsequent lawsuits, along with links to mainstream news articles, support groups and more!

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Comments

  1. Carla says:

    Has any one tried to commit suicide while discontinuing Cymbalta? My 16 yr old daughter had been taking it for a few months when she stopped taking it cold turkey because she was feeling good. I was out of town on business and she was in a really good place so I felt I had no need to worry when I got a call that she had been rushed to the emergency room because she had attempted suicide at school. We were extremely lucky someone heard her as she was passing out! I am wondering if it could of been the sudden withdrawl of Cymbalta, since she was mentally in a good place and there were no other signs!

    • Donna Gregory/FedUpwithFatigue.com says:

      Yes, the attorneys handling the previous lawsuit indicated to me that at least one person (there could be more – I didn’t ask) had died from suicide after stopping Cymbalta. The withdrawals are very, very serious!

  2. Alysha says:

    I have had the same withdrawal symptoms when taking fluoxetine and currently am experiencing the same again with Escitalopram. The “brain zaps” for me are the most unbearable side effect. I have been suicidal because of them. Something I have never experienced otherwise. Something has to be done. We are trying to rid ourselves of something awful only to be handed a demon.

  3. Trudy says:

    Trying to get off . doing it 30 mg at a time . I don’t know how I will feel when I get off the last 30mgs. scarry

  4. Jan Hussey says:

    There is a protocol that works well. I have stopped Cymbalta twice. The first time was hell. Brainzaps, irritability, etc. Second time. Piece of cake. I found the book (Now website) TheRoadBack.org. Please, please read his guidance and follow the plan exactly. It saved me from the hell of going off Cymbalta.

  5. Sandra King says:

    I thought I was going to die taking that stuff. First doctor gave me 60 mg. I violently vomited every time I took it the doctor got mad at me and said he was nothing he could do. I went to a nurse practitioner she gave me 30 mg . When I took it I only wished I could vomit my guts up. I will under no surcumstance take that drug ever again

  6. Charity Wattenburger says:

    I have been on Duloxetine for about 2 yrs now, with great results. I have severe Fibromyalgia and all of the horrible things associated with it. I also have Hemiplegic Migraines. I am being treated at a pain clinic, and at my regular monthly appt around the 1st of June, my insurance co wouldn’t refill because they needed some sort of yearly approval. I’m on a 60mg dose at bed. The med was abruptly stopped and not refilled for approximately 20 days. I was in agony all last month. I am still in excruciating pain, I think killing myself to kill the pain, would be less painful than waking up 1 more day like this. Medicine is supposed to help us, Not hinder us. I have cried many days and nights in silence. I have had to take a medical leave from college. I can barely breathe through the pain. I am ged up with big pharma. I’m fed up with the way they lie and hide everything important to get their drugs on the market.

  7. Veronica says:

    In 2009, I was taken off of Cymbalta after being on it for a year. I nearly killed my then boyfriend and 8 year old son. My pain was off the charts. The physical effects were all stated above and my mental state was one step away from murder. After nearly 20 days without it, I went back on it and have never tried to quit it due to fear of the withdrawal effects. Each of the effects listed as a result of withdrawal effected me greatly. Within one hour of taking Cymbalta again, I felt much better. I fear never being able to remove myself from this drug. Had I known I would suffer like this, I’d never have taken it in the first place. Live and learn.

  8. Heather says:

    Effexor has very similar withdrawal issues. It is devestating.

  9. Without looking it up, I believe Eli Lilly made somewhere around 36 to 46 billion with Cymbalta before its patent was released to generic form. But, you are concerned about this faulty medication, but don’t want to cause any problems with this medications manufacturer,…really, seriously?

    I believe that the only way to get any legal recourse now, is to have an attorney launch a lawsuit over being harmed by this terrible medication. From what I understand, there are no more class action lawsuits available to people in this form of legal recourse. Now, the pharmaceutical companies are lobbying hard to try and have crooked politicians push H.R.985 through, and get it on the books as law. It’s labelled incorrectly, and has already been introduced to the house back in February 2017. What this ridiculous legislation would do, is basically give corporations/doctors ect. immunity if their products or services harm, or even kills someone.

    So, if this concerns any of you reading this, then please take action, and call everyone that you can in voicing your disapproval of this infringement of consumer rights. This would do away with all class action lawsuits of this nature.

    This is nothing more than pure greed, anytime you push a product onto the consumer, and make fraudulent claims about its side effects only to be viewed as a save-all medication that is going to cure all your problems, such as pain, depression, nerve pain, ect., they need to be brought to their knees. But I seriously doubt that anything will be done to these immoral people that run this company.

    I would’ve liked to have known the truth about Cymbalta when my pain management doctor suggested it to me. It would have made a big difference in whether or not I would’ve okay with it. It would’ve also been great if they had also made every doctor, and patient aware that you should NEVER take Cymbalta, and Fentanyl. I found out the hard way. It cost me my life on November 18th, 2015. I am extremely grateful for the emergency crews for their diligence in the ER, and bringing me back to life.

    No one should EVER have to go through such an ordeal, and if they do, then at the very least the manufacturer, Eli Lilly, should be made to pay through the wazoo for harming, and or killing someone. As you’ve stated in this article, the withdrawals is very difficult, and you are correct. Cymbalta was hands down the worst withdrawals of anything that I’ve ever been exposed to. Opiates? Hahaha,…they are minor compared to Cymbaltas hellfest.

    Cymbalta did lower my nerve pain, and chronic pain about 1.5-2 points on a 10 point scale, but this medication isn’t worth the chance of dancing with the devil, and possibly losing your life. Just a FYI, the FDA has a Black Box Warning on Cymbalta. I found this on my own after I survived this ordeal, and realized that I was approaching the 3rd phase of SJS/Tens. You want to know how ugly it can get? Look this up, SJS stands for Steven Johns Syndrome.

  10. Dani Strand says:

    I was given Cymbalta for my pain n depression was so severe. Within 3 weeks I felt good mentaly. Cymbalta continues for me. If I miss a day or two Im weeping. I never tried to come off the drug. I guess if I do I know how it is

  11. Sue S says:

    Pfizer who manufactures Effexor should also be sued for the same reasons. I have had the worst withdrawal symptoms if I miss a day and a half of this drug. My PCP is well aware of this horrible side affect and wanted me to transfer to Cymbalta, but I said NO. It scares me to go into these withdrawal symptoms from Effexor.

    • D. C. says:

      So true! Experienced exactly the same thing. Wish there were specialists who helped people withdrawal safely from these drugs, with the least amount of side effects. If you ever hear of any let me know please.

  12. That’s interesting. I tried duloxetine/cymbalta for clinical depression/anxiety + epilepsy combo. While it didn’t work, it did not give me bad side effects or weaning issues. Do you think it affects fibromyalgia patients more or in different ways? Or perhaps I had overlapping drugs as well. I woll ask my psychiatrist more the next time I see her!

    • Donna Gregory/FedUpwithFatigue.com says:

      According to the research, up to 50% of people experience withdrawal symptoms, so you must have fallen into the group that didn’t have an issue with that.

  13. This just confirms what I have suspected all along about many of these relatively new Fibromyalgia drugs being rushed to market before the proper R&D has been done to ensure their safety. I’m glad that I resisted the pressure to go on these kinds of medications, and kept my pain control regimen as simple as possible.

    One really has to read the raw data of a study to fully know what these researchers really proved or didn’t, not just buy their conclusion. Having worked on a research team I know from what I saw behind the scenes that the drugs most widely publicised are not necessarily the most effective or safe. Alot of studies are skewed and if a drug company has enough money they can basically buy a scientist (or whole team) to draw the conclusion that gives their drug a good rap. The FDA is often in bed with the largest companies and turns a blind eye when it is well aware that there are serious adverse affects, some of them life-threatening.

    Patients are often a captive audience because we want so much to find something that will make the pain stop and neither they nor their doctors often have the time nor the energy to read the raw data and look deeply into such events as how many studies had to be ended early and for which adverse effects, the number of participants per study site, methods used, and pay close attention to anything that was NOT documented or considered in the study, etc…all things that make a huge difference in the validity or statistical significance of the team’s findings. Although the investigators are “supposed” to divulge any competing interests that could bias them, they often do not. We and our doctors are left to guess at that, and it takes alot of digging to find out who these researchers are and what preconceived ideas they come in with, etc.

    No longer can we really afford to blindly trust people involved in the process of bringing these medications to us. We have to know how these studies are done, and the details surrounding them if we are to have a real picture of whether this or that drug is genuinely safe and helpful to a majority of the population or whether this is mainly hype created by the manufacturer that has a financial interest in the billions to make sure that doctors have a favorable view of their medication and in turn promote it to their patients.

    We also have to weigh the severity of an adverse or side-effect. If a drug causes itching and dry mouth well then maybe the benefit outweighs the risk, but if the risk is organ failure, stroke, or death, for instance that is a whole other kettle of fish.

    As much as I hate to be in pain, I do not want to risk death or becoming further disabled by a drug that is increasingly turning up strong evidence not in fact to be safe.

    An alternative to an out and out ban would be for regulatory agencies or a judge to suspend it and meanwhile insist that the drug company go back to the drawing board to work these very serious bugs out of it before continuing to have doctors recommend it to their patients. Also, there should be a big warning sent out to all physicians stating that the risk is severe and that they should NOT gloss over it when speaking with their patients.

    We should not have to beg this company to do this of their own accord. It’s ludicrous that it has taken lawsuits for any official recognition of this problem to come to light.

    Some other system needs to be put in place other than the FDA (which has shown time and time again not to be trustworthy nor approving drugs wisely).

    In a nut shell; we AND our doctors are having the wool pulled over our eyes, and it is the patients whom have the most to lose in all of this. When they say that this is only happening to a small segment of the population you have to question whether that is really true or whether it’s just a form of damage control. That’s where digging deep into the data is vital, and keeping track of all reports that pop up in the chronic illness community.

    Often there are additional people reporting these adverse affects but they either aren’t reporting them in a way that they’ll be statistically counted, or they might just discontinue it and never officially report it at all. More often than not the number of cases counted is underrepresentative, (not exaggerated) of the actual prevalence.

    • I have been using Cymbalta for years to help with my fibromyalgia. I am not sure if it is helping or not, but I cannot handle the horrible feelings I get if I am even a few hours late taking my pill. If I miss one day, I am so dizzy and feel my heart skip beats. I gave up going off this medication because the side effects I get when I don’t take it are intolerable.

      • Donna Gregory/FedUpwithFatigue.com says:

        You might want to join the Cymbalta Hurts Worse Facebook group. They have a protocol that people are using to successfully quit Cymbalta.

  14. Maureen says:

    I was put on Cymbalta when it first came out and had a horrific effect from it. I became psychotic and went into major panic attacks to where my daughter wanted to take me to the hospital ER. I was petrified to go so I just rode it out but the withdrawal was something I will never forget. I became very depressed after that for quite awhile.
    I had also had bad effects from Lyrica before then so that began my journey of learning that I am very sensitive to those brain drugs, as well as many drugs. The same happened when I was put on amitryptilline and Nortriptylline. It took years to figure what pain meds (opioids) had the least amt. of side effects for me.
    From what I’ve learned, many FM folks are like me.

  15. Melissa says:

    I’m thankful beyond thankful to have a GP I trust. I don’t want to think where I’d be without his knowledge, his interest in continuing to learn, his kindness – people think GPs don’t know as much as specialists. Now, I’m not saying if God forbid I needed heart surgery that id use any one other than a cardiac surgeon but, GPs are the gatekeepers. They see so much, they put 2 and 2 together. When I’ve needed to discontinue medications, my doctor spelled it out for me…that I’d very slowly step down. Not over days or even a few weeks. This is because he continues to read updated information, because he understands how medications affect the body, the brain’s chemistry.

    I had to discontinue Savella several years ago. It broke my heart to do so because it provided incredible Fibromyalgia relief and nerve pain relief. I slept through the night, restorative sleep. But then it drove up my blood pressure. And so I was weaned off the drug.

    Savella and Cymbalta are chemically similar drugs with the difference being impact on the ratio of serotonin to norepinephrine. Weaning was very slow. Step down, wait a week, step down again and so on until it was done. I did it right and for the first time in my life, experienced suicidal ideation. I knew it was possible while either on or discontinuing Savella that it could happen. It still scared the hell out of me. Were it not for my doctor, I would’ve potentially experienced some other awful symptoms too.

    Please, please – speak to your pharmacist, use Google, speak to your doctor, to other patients… studies before a drug comes to market involve a relatively small number of people. It’s not until a drug reaches the market that we are likely to see the actual full range of side effects. I learned [the hard way via Ultram] to continue checking information on my meds from time to time because more details come out as the medication is prescribed for off label use.

    Also, please do not think of OTC meds, supplements and herbs as benign. They can interact with prescription meds, amplifying or nullifying a drug’s efficacy. They can do things like thin the blood, impact brain chemistry and a host of other things. It’s vital that you inform any and all of your doctors and your pharmacist of anything you’re taking.

    As I write this, I’m withdrawing from a migraine preventative. I’m doing it correctly and I’m feeling intense nausea plus lightning across my back. Thankfully it’s not affecting my ability to think. There are certain meds that require slow titration both up and down – that includes anti depressants, anti seizure meds, steroids and other classes of medication. If you are ever unsure of a side effect or interaction, please do call a pharmacist. And please make sure someone you trust has an updated list of meds you take including dosage and purpose. That information could be crucial.

    I’m sorry for anyone who has had a terrible experience with a medication. Withdrawal can be awful and even dangerous. So please do it very very slowly and please also inform a loved one of what’s happening. They may very well notice something that would require immediate medical attention.

  16. I recently went from lyrica to cymbalta as lyrica made me so snappy at my family and depressed badly …cymbalta worked great and also works as a depressant which many drs do not tell patients about so when you do o off it quickly you have major problems!! I had to suddenly go off mine when I lost my dr and after my 30 day supply ran out and still had no new dr..i was in trouble and it was hell!! Even my lips were fuzzy feeling y head dizzy very suicidal crying sick pking diarrhea, everything like the flu and pharmacy said could last weeks.

  17. Sandy says:

    I am sorry that the people who were taking Cymbalta weren’t warned about how to tampered off the medication. It is something most people who take medications for depression, bipolar or anxiety know how bad it can be tampering down on these types of meds. It makes me anergy and sad most “family or rehumie” docs don’t understand how nasty these withdrawals are.

    I have been on these type of drugs before and have a couple tips. Always titrate down slowly. Go by how you feel. Sometimes you will need to go up a little on some bad days. Some people get “brain zaps”. The best way to deal with brain zaps is taking sudafed. Some reason it eases the effect. You can also try reading what people have done to minimized the effects in Mental Disorder chat rooms.

  18. Rhonda D. says:

    Hi all. First off, I’d like to thank Donna for giving us a place to speak out in a web community that understands each other. Many thanks Donna!

    I am currently on Cymbalta for fibro. My pain management doc started me out on 120mg which I’m still taking. I’ve been on Cymbalta for about a year now. While it does nothing, zip, zero for my pain, it does help my mood. Some days I’m still pretty depressed but most days my mood is at least bearable. I’ve read lots of stories of side effects with this medication. I am, in fact, scared to come off of it. How many others are on such a high dosage of this medication?

    • Jackie says:

      Hi Rhonda,
      I’ve always been on antidepressants for 30 years (I’m 55). My rheumatologist started me on 60mg of Cymbalta. I increased to 120mg of Cymbalta over a couple of years time in 30mg increments.

      About a year ago I discussed with him that the Cymbalta helped the pain, but not the depression. (Strangely the opposite of the effects you get). What worked for me was adding 10mg of Prozac and cutting back to 60mg of Cymbalta. I didn’t have any withdrawal symptoms at all, like many others. I will note that I’ve never had problems switching antidepressants though. I feel so much better taking Cymbalta + Prozac.

    • Kerry-Ann says:

      I am on 120mg as well how ever my rheomotoligst has asked me to come off them as I am in such a high dose and it does put a lot of weight. I have dropt to 69mg for the last week and I’m crying over nothing don’t wanna do anything

  19. KathyJo says:

    My rheumatologist put me on a low dose of Cymbalta and when that didn’t work, she kept increasing the dosage until the pharmacist refused to fill such a high dose prescription.

    So where did that leave me; completely out of Cymbalta (cold turkey). I really have no idea how long my husband took care of me, I was vaguely aware there was someone there, but really didn’t know who they were or what they were saying. The brain zaps and memory lapse continued until eventually I was no longer able to work. (Stopped seeing the rheumatologist)

    For the next 3 years my P.C.P. prescribed, pain meds, antidepressants, and just kept adding medications until I was finally able to manage the pain. Unfortunately, the doctor prescribed the generic of Cymbalta as part of the medicinal cocktail. I only realized this one VERY LONG MONTH AGO; when my husband took my prescriptions to get them filled and the pharmacy and they would not fill my pain meds (that I had been on for over a year); they said the FDA is cracking down. Seriously!!!!

    So here I am again.
    More intense brain zaps, most days I can’t remember the words to complete a sentence, I keep falling down all the time, I’m living in total Hades, to the point I told my husband to take the gun and anything else out of the house that I could use to put myself out of this misery.

    The pain is quite simply unbearable.

    The only ONLY thing that has kept me from doing something stupid is my faith in God.

    Doctor’s no longer care about their patients, I called my doctor every day for a week…all they had to do was call the insurance company with a quantity over-ride. Their response….it’s the same thing you’ve been taking, I shouldn’t have to.

    So, no pain meds either.
    I live in Alabama, does anyone know of anything I can take for relief? I have tried CBD syrup and tincture from legalmeds.com but I can’t get the pain under control.

    • Maureen says:

      KathyJo, re: getting your pain meds filled…have you tried another pharmacy, if possible in your area?
      I’m assuming that your pharmacy just chose, for some odd reason, to stop filling them??
      Hang in there. I feel so bad for you. I’ve been without meds and it truly is like hell to hurt so badly.
      I will pray for you.

  20. Jeanne Coddington says:

    I am one of the lucky ones. I was on Cymbalta for several months, read about possible problems getting off it but followed doctor’s advise and had no problem with it. I wanted off as I kept falling asleep everywhere! As long as I was moving I was ok but sit down-even driving-and it was lights out for me! I’m on Savella now and it is helping with the nerve pain. I have chronic pain also and take medication for it. I’ve seriously modified my lifestyle or no pain med helps.

    • Melissa says:

      Savella was a God send for me. I watched as it went through trials and my rheumatologist prescribed it as soon as it was available. It worked wonders. I eventually had 2 fairly common side effects that necessitated I stop taking Savella – increased blood pressure (was 150/85 when I was resting) and chronic hypoglycemia. Because I tend to be hypoglycemia and because I have chronic intractable migraines, I had no choice but to discontinue the medication. It’s the only one I had to discontinue that I tried hard to stay on. I felt like a normal person before the side effects started. I felt the way I did before Fibromyalgia – I slept through the night and woke feeling rested. I had energy. I had great pain control. Make sure your doctor keeps track of your blood pressure at each visit so you can see if there’s an upward trend. I’m really happy it’s helping you. And also a little jealous. 😊

  21. Jean Price says:

    This is kind of scary!! I’ve been on the lowest dose of cymbalta for many years, through my pain management doctor…and yet this is the first I’ve heard of this! I also know Cymbalta is the choice of many endocrinologists for patients with diabetic neuropathy…so this would be important to have highlighted!

    I do know the literature talks about not stopping it abruptly, yet I had no idea there were people having such major issues when they did withdraw from using it without tapering. I was prescribed Cymbalta for nerve pain from complications resulting from a nerve block injection for foot surgery. (The anesthetic acted like a potent toxin, and left a half dollar size hole in my ankle, right at one injection site…AND right on top of a major nerve. It took six months to finally heal the wound, yet the pain had remained.

    I will say the pain relief results from Cymbalya for me were close to miraculous…for my foot pain only…since I had no changes in the pain from my other areas of neuropathy from multiple failed back surgeries. (I do have less relief with a couple of the generics, and I’ve learned which ones to avoid.). My dose was to be bedtime, the doctor did say to,help avoid any sleepiness and other side effects.. and that has worked for me. I,still am amazed my foot pain improved those ifrst doses, by easily 50%…up to 75% with longer use, and it was the type of pain oioiods wouldn’t touch! I wonder if the severe effects of abruptly stopping are dose related, or if this occurs at the minimum dose also. And also if these effects are seen more often with those taking it for depression alone.

    As for the percentages of occurrences of these major side effects, as listed by the manufacturer….when I worked in a pharmaceutical research facility years ago, our informed concent was handled very thoroughly. When it came to the the POSSIBILITY of ANY side effects, including a severe allergic reaction…we WERE NOT TO in ANY WAY MINIMIZE IT AS A RARE happening or a SMALL PERCENTAGE! The idea being… it really doesn’t matter if there’s ONLY a one percent risk IF YOU ARE THE ONE AFFECTED! So our patients were instructed to always make their decisions to take the study medicine based on the fact that they COULD POSSIBLY BE THAT ONE PERSON TO have the more serious reactions!! (And we also stressed this same philosophy for deciding…whenever they took any type of medication from their doctors too!).

    Sometimes trying to qualify a risk matters little…when it’s YOUR life that affected! We can always be aware of potential side effects and weigh those against the possible benefit. Although that’s a lot easier said than actually done…in real life! And EVERY ONE OF US IS UNIQUE, too! So it’s difficult to predict who might have problems!

    I think we do tend to use medications as if they don’t really warrant our closest observation for any ill effects or reporting of any odd effects, too. Since we know they have already been researched! Yet that research is a fairly narrow band of patients…and limited to using other medications usually AND without other medical conditions. I found most doctors weren’t even aware of how medications are studied and then how they make it to the pharmacy shelves! So there’s lots to consider with anY medication…and lots to be on guard about, too!

  22. Denise says:

    First off, I am so happy to have found your blog! I had been looking for factual information on Fibromyalgia and I wanted to hear from others who are going through similar trials with it. Instead, I found a lot of whining and complaining. Now, I’m all for complaining about the horrible stuff we must endure, but at some point, we have to pick ourselves up (if we’re physically able to that day!) and start looking for resources to help make our lives somewhat manageable. That’s exactly what you provide, so thank you!

    I started with Lyrica and thought I was going to die! So, when I switched to Cymbalta, I was ready to push through the side effects because they weren’t as severe as those from Lyrica. I have a wonderful doctor who knows how much I dislike taking meds, and I know that she would never have prescribed Cymbalta if she’d been aware of Cymbalta Discontinuation Syndrome.

    Two years ago, I went on vacation to the beach and was involved in a car accident on the way. I was injured and was prescribed pain meds, muscle relaxers, and steroids. I was able to continue with our vacation but when I arrived, I realized that I’d left my meds, including Cymbalta, at home. As I said, I can’t stand taking meds so I decided to try to go off of them. I felt okay and spent lots of time on the beach and in the pool and hot tub. When I got home, I decided not to take Cymbalta anymore. A day later, I ended up in the hospital with severe cellulitis, the result of picking up bacteria from the hot tub after stepping on a seashell and getting the tiniest cut on my foot. I spent a week there, on IV antibiotics.

    My hospital discharge coincided with the discontinuation of my pain meds, steroids, and muscle relaxer. That’s when my world fell apart. I hadn’t had Cymbalta for three weeks, but apparently the other meds I was taking masked or postponed the withdrawal symptoms. Suddenly, I was unable to think straight, I lost my balance while walking, I felt queasy, my hands shook, and then the horrendous brain zaps began! I felt like I was going to lose my mind and I didn’t know if I should attempt to push through since it had already been three weeks or if I should start taking 20 mg of Cymbalta. I decided to stick it out…and I lasted one day! I grabbed my vial of meds, opened a capsule and, with shaky hands, took out a few little beads and put them in my mouth. I felt like a drug addict who needed a fix!

    Fast forward two years, and I’m still taking Cymbalta. I couldn’t get off of it! I’ve gotten off of Morphine and Fentanyl – powerful narcotics – but I was no match for Cymbalta! I want to try again but I’m terrified. I live with chronic pain (Fibro is just one of my issues), I have a very high tolerance for pain, I’m a strong person…and I’m just not sure that I can kick this!

    I understand that Cymbalta isn’t a controlled substance but it absolutely has to have the same warnings with it that would be found with any narcotic! What Eli Lilly has done with this drug is inexcusable.

    Denise

  23. Bernadine Grooms says:

    I only lasted 3 days on this drug. The side effects were awful, and after reading others experiences with trying to come off the drug, I’m glad I chose to quit. It’s only one of two drugs I’ve ever stopped shortly after starting it.

  24. So what happens if you want to get off cymbalta but are terrified to try?

    • Donna Gregory/FedUpwithFatigue.com says:

      First, you definitely need to speak w/ your doctor about this. Then, I would also suggest joining the Cymbalta Hurts Worse group on Facebook where others are using a protocol to get off of Cymbalta successfully.

  25. Gail Dudlicek says:

    I am a “Cymbalta Survivor”, although I use that term loosely as 10 years after having been off the drug, I STILL have brain zaps and unexplained dizziness. I actually experienced the withdrawl symptoms while I was ON the drug, not weaning off of it. I was suicidal and I couldn’t drive or work or do much of anything. These symptoms actually made my depression worse. I will never be able to be off an antidepressant, as the brain zaps return to a point that I am not functional. It’s a shame that this drug can be so good and so bad all at the same time.

    • Mandy says:

      I am 4 off Cymbalta. I had to quit cold turkey after being in it almost 4 years and I too still have “withdrawal” symptoms. The brain zaps, major fatigue, depression, restless leg syndrome, twitches everywhere, memory issues and can’t find my words, cannot focus, anger issues and started doing street drugs and drinking to cope with withdrawal.
      I’ve lost everything. My kids, my family, friends because nobody believes me.
      My self worth is zero and Ive become a recluse.
      I am so anxiety ridden and lash out when my stress is bad that I can’t even work anymore.
      Not sure what will happen to me when my Father passes away. I had to move in with him after Cymbalta withdrawal and drug addiction made me lose my mind.
      Go back to the streets I guess.
      I was a full functioning person before Cymbalta.
      I didnt even ask my dr for it.
      I just wanted a few Xanax during my divorce.
      7 years later…. I am a shell of what I was.

  26. I’m one of those people for whom Cymbalta has been a life saver. It hasn’t fixed my fibro pain by any means, but it has made it more bearable. I have had to wean off of it before (I became pregnant and it is contraindicated during nursing/pregnancy) and yes, the withdrawal is horrifying. I fear the day that I may have to wean off of it. I can only hope that by then, there is a better/standard protocol in place.

    • Olivia says:

      Cymbalta is the o my thing that has helped me as well. I couldn’t function without it!

  27. Laura says:

    Coming off of cymbalta was a truly horrific experience that left me in a&e because not only did I have no idea what was happening, I was actually tachycardic from it! (This was on top of nausea so bad I couldn’t eat, dizziness, fainting, migraine, inability to focus!) The worst part for me, though, was how it affected my anxiety: it was so bad that any single noise set me off and I felt like my skin was made of sandpaper. I was so oversensitive that I felt like I was having mini seizures which then lead to panic attacks.

    I’m in the UK and suffice it to say that the NHS did sweet FA about it. Only one person took me seriously, a lovely woman from the ambulance. She told me to make sure they checked me out properly but I was so anxious and the wait time was so long that all I ended up doing was getting some more anti-anxiety medication.

    In the end, that turned out to be a life saver because it took the edge off so that things were more bearable, but I was bed bound for a week and a half and still suffering after nearly a month of being off it.

    If I’d known, of course I’d have done things differently and that’s what’s so frustrating! Cymbalta worked for me for a good while and I don’t want it taken off the market. I just want people to be warned first!! (I want docs to take you seriously about it :/)

    Anyway, I know this has all been said before and I’m sure it will be said again haha! Just wanted to share my experience. Maybe those who are being weaned off of it can get a prescription for anti-anxiety to help? Mine was upped at the time. It definitely made a difference.

  28. StevefromMA says:

    Helped me maybe 10% less pain, then had sudden shortness of breath after a week, very scary. Yes, I then weighed out the beads to try to take only 10 mg but ineffective so I got off. No problems discontinuing, though.

  29. Emily says:

    Moral of the story: never expect anything but lies from drug companies.

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