Cymbalta

I am just sharing my experience because if I can prevent ANYONE from taking this drug to help with pain I will. I was put on this drug because I do not like narcotics at all. My Ra doc started me on 30 mg then 60 mg and it helped at first but eventually stopped. My liver enzymes have been an issue for awhile now and came to the point last week Ra doc said stop everything which this CYMBALTA I did just cold turkey. I can tell you I have never in my life ever experienced so much withdrawl issues in my life as I have with this drug. I first thought I had the flu but yesterday I was still feeling really bad and had other symptoms that normally are not flu related. When I looked up the side effects of coming off this drug I was shocked and the lawsuits agaisnt the Lily Company for this drug by many people was an eye opener. I am still suffering withdrawl from this drug it has been 5 days and I was only on this drug for 5 months. I am so angry at the RA doc for not warning me before even starting this drug what can happen when stopping this med and let me make the decision if I want to try it. Ra is bad enough never mind having to go through withdrawl like a heroine addict. Please think strongly of trying this medication it is bruttal to get off. If anyone else has experienced bad withdrawl from this drug I would love to hear how long it lasted, and your side effects from it. Thank you so much, lets all hope they find a cure for RA.

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  • I can totally understand why you feel so strongly about Cymbalta (duloxetine) Amanda. I could go into great detail about how pregabalin (Lyrica) negatively affected my h when it was stopped abruptly. In his case it was prescribed for diabetic peripheral neuropathy (as is duloxetine). It took him months to get back to something like normal & if he's honest I think he'd admit it's left its mark emotionally. He had to go back on pregabalin to taper down correctly which went against everything but it had to be done because it was that or admittance to hospital! There are a few commonly prescribed meds that must be carefully tapered, tramadol & gabapentin to name two & when done correctly whilst a struggle it can safely & eventually be achieved.

    Like you I've read very sad accounts of what can happen & also the many law suits.

  • Thanks for replying ...I am just so angry why Canadian Goverment would even allow such a drug on the market and without huge warning before starting the side effects if ever stopped suddenly. I thought prednisone was bad. I am so sorry to hear about your husband and I truly understand the emotional part of this drug on top of the physical side effects. Why would any RA Dr promote this med given all the severe side effects. To think a child possibly could be prescribed it truly scares me. Any proffesional, client, family member who works, lives with RA patients need to know how this medication can effect a individuals life. Thanks nomoreheels I really have empathy for your husband.

  • I agree, it is very poor management, the prescriber should make it clear that it shouldn't just be stopped. I know in this case (& my h's) it was the prescriber that initiated the withdrawal of the med so the systems fails from day one.

    As it is when prescribed long term & tapered as directed such meds can still be very difficult to come off. I know of one that it's recommended the taper is done over a quarter of the time the med's been taken. So say you've taken something for a year tapering would be over 3 months. Doesn't seem long but when you're trying to come off something your body has become reliant upon it must be a very difficult 3 months.

    I truly hope your symptoms ease Amanda but do speak to your doctor (GP) if they persist. I don't know for sure if the same as my h had to do would be recommended for duloxetine but possibly it's an option? As I said it goes against everything but going back on & a lengthy taper spared my h from further psychosis. x

  • Oh dear I didn't know Lyrica ( pregabalin ) was banned. It's been a life saver for me as I have problems with my femoral nerve on my right side. The pain before was awful, I couldn't walk more than a few feet without the vice like grip on my leg. Also had a few falls due to weakness in my leg. Started on a low dose which has slowly been increased. Can't walk too far and if I stand too long the pins and needles and weakness in my leg comes back but life is so much better on it. Scarily I also take Tramadol, my hands and feet ache +++ at times. Reading this has worried me know, any way hope you have a pain free day x

  • I was thinking of the wrong drug & it wouldn't have affected us in the UK where it's still available (FDA is the US equivalent to our MHRA), sorry if I panicked you. I hope it continues to be helpful for you. I think you only need to be concerned when or if you need to stop either of them, ensure you're given a safe tapering plan. ;)

  • Hi NMH / fear-of-nothing

    Not with Cymbalta but like your husband I have had major problems discontinuing Pregabalin.

    I didn't realise what it was at first, I'd only been on it for a few weeks and (with hindsight) forgot a dose. I was so poorly I couldn't get out of bed and didn't even manage to take any of my meds for over 24 hours.

    Over the space of about 2 years I had repeated bouts of this and was investigated for all sorts of maladies, to no avail.

    Eventually I remembered reading something online about the problems someone had when they stopped it suddenly and it was like reading a description of how I felt.

    I realised then that it must have been me forgetting to take it in the evening, when I woke in the morning I can't really describe how bad I felt.

    When it 'clicked' and I realised I felt so stupid for not realising sooner and for forgetting to take it so often. No other drug has made me feel that bad so quickly.

    I am now fastidious in my medication compliance. I have not forgotten to take anything since.

    I have been very, very slowly reducing it (say 25mg every fortnight or so) and am now on 200mg a day (100 X 2) from a peak of 600mg. It's taking a long time but the alternative is not good. If I reduce it too quickly I feel constantly ill and it causes some very, very strange mental issues.

    So I know how your husband (and I think you FON) feel, it's horrible.

    They should warn you that it is possible to feel that bad upon abrupt discontinuation. I would never have taken it had I known.

    Ade

  • I am not so much having psychosis issues....it is the visual, vomiting, toilet frequency, sweats, chills, headaches, tired, sloshing brian kind of feel, weak, sleep distrubance, and the zapping in the brain/head and seem to cry easier......ggrrrr...just want it all to stop so I can feel human again.....I am not going to take any medication at this point this has scared me to much....joys of RA

  • I 100% agree with you having had exactly the same experience a year ago as you are having now. I blame the subsequent flu, pneumonia and UTI sepsis on the way withdrawing too fast off Duloxetine/ Cymbalta affected me. In the end I went back on it at the lowest dose and then emptied a little more of each capsule down the sink everyday.

    I had a terrible year health-wise last year but not even the pancreatitis from Azathioprine or the lumbar puncture that took 8 attempts or the post op wound infection were as bad as the week I had when I came off Cymbalta.

    I did tell me GPs afterwards because I wanted them to know so other patients weren't encouraged to come off it cold turkey. I did also tell a former psychiatric nurse I was working with about this and she was horrified that my GP had said I could just stop. I ended up with petuchiae all over my forehead and around my eyes from retching. My husband drove me to A&E one night with the worst headache I've ever had. I was violently sick half way and by the time we arrived I was fast asleep so he drove me home again.

    The thing is that some people absolutely swear by it - we are all so different. But you and I share this horrific reaction and I always warn people to taper off very slowly just same as steroids - emptying capsules as I did. It was far harder and scarier to come off than Prednisolone so why don't doctors treat it with the same caution? My GP was cross with me for coming off it and when my husband phoned to ask him what to do he just said "she's too impatient and doesn't give these drugs a proper chance". I took it five months but never even got up beyond 40mg!

    Tx

  • Twitchytoes how long did your withdrawl side effects last for. Thank you in advance this one roller coaster ride I want to stop....only one word I can describe for myself BRUTAL

  • Absolutely dreadful for you I know. As I said I couldn't hack it so I went back on at 20mg (I think this was lowest dose) and emptied a bit more out of each capsule daily over about ten days. This worked well but then I got really sick with flu which led to pneumonia. I blame the Cymbalta withdrawal for this and other subsequent infections although I could never prove it. I think it weakened my immune system severely - all that retching and terrible headaches. Ugh.

    Coincidentally tomorrow I have an optometrist appointment. I had one six months ago and was found to have a flame hemorrhage in one eye by my optic nerve. He couldn't understand it as usually only sees these in diabetics. I blame all that retching - bet it's gone tomorrow.

    If your horrible symptoms haven't passed or improved by tomorrow you may want to try my method of going back on one capsule for a week and then emptying it out a little more each day? Tx

  • Ps my rheumy and GP were exasperated that I keep refusing Pregabalin or Norotryptyline - but absolutely never again will I try any of this family of drugs!!

  • I sure hope what has been shared about this drug helps others to think about even trying this drug and hope pray we all have cure one day.

  • To be fair, a lot of drugs have powerful withdrawal effects. People need to be warned about them, and helped to minimise and manage them, and 'cold turkey'/stopping suddenly is not recommended unless the drug is making you dangerously ill... But even the drugs with awful side effects still have useful functions - surgery would be torturous without morphine, for instance.

    By the way (lightheartedly), the worst withdrawal effect I have ever experienced has been from 24 hours without tea! Seriously! I was sick, dizzy, and had a migraine headache like someone had stuck a spike through my skull... I thought I had sunstroke or was becoming seriously ill. If I hadn't managed to get a caffeine 'fix', I don't know what I'd've done...!

  • The point is, Flow, that unlike tea, this is quite a serious prescription only drug. Yet many people who are put on it aren't warned about how hard it can be to come off. So we aren't making educated decisions about whether to try it in the first place.

    I learned how to get off it by googling and there are whole sites dedicated to those who have suffered terrible consequences or sued Ely Lilly over Cymbalta withdrawal effects. I cannot understand how GPs can insist and support a person to taper slowly off cortosteroids yet not do exactly the same with these SSRIs and SNRIs. I just think it's appalling!

  • I don't think it's fair to generalise, I think much depends on the GP, their inbuilt conscienctiousness & full understanding of what they're prescribing. The only med I've needs to taper was gabapentin & my GP gave me a safe tapering plan without needing to check.

  • No one here is generalising. But many of us aren't as lucky with our GPs as you are NMH. From what I've gathered most people in the UK aren't given monitoring or advice about tapering off drugs like Duloxetine from their GPs. A tapering plan isn't standard protocol with these drugs and I believe it really should be.

  • I just don't think I can be the only one is all.

  • Totally agree nmh. I had a terrible time on Gabapentine,so GP. In his wisdom put me on Pregabalin and I ended up worse, I was put on them for terrific burning on both feet and legs,I ended up not really being able to communicating with my family or anyone else, I couldn't put a few words together and memory was so bad,also coming off them was horrendous.

    Jean

  • I have Bipolar and get a lot of chest infections,after trying different Antibiotics with no joy GP said that she could only give me stronger ones if I stopped taking Lithium for my Bipolar which I had been on for many years,I told her surely I would have to come off them slowly but she said because I had been stable for many years she said I would be fine.The chest infection wasn't getting any better I ended being rushed to hospita,l a week after my hubby had to call the Mental Health Crisis team,I Have never been so terrified I Had a really bad Psycotic episode and ended up in Psychiatric Hospital on Bonfire night,as all fireworks were going off as they took me there it sent my mind working overtime,when I arrived a man sat with me asking questions,whether I had been in trouble with the police at all,which I hadn't but made me think I must have done something really bad.They put me in a tiny room after trying to get up two flights of stairs and left me there,I'm rambling on a bit so won't go into many details but just to say I had thoughts in my head that I must be a terrorist, I went in there with two bags of clothes and medication for all my other health problems, I climbed in the bed fully clothed with covers over my head so that I could hardly breathe, I had in my head that I had bombs in the bags,going to stop there but would just like to say that I am quite ok now but the GP.was not she got fired from the Surgery when it was found out what she had done. I'm really sorry if I have gone on too much but it is the first time I have spoken about it after 4 years and it has certainly helped me to get some of what happened off my chest. I hope I haven't upset anyone at all.xx

  • What a truly awful experience Jean. The trauma you went though unnecessarily because of a medical professional not erring on the side of caution or understanding the effects of sudden withdrawal. It's an experience quite obviously deeply imprinted, thank you for sharing. Mental health is a difficult condition to talk about or admit to to others, I'm pleased you did with us & that it's helped to divulge some of it now. xx

  • Flow4 I totally agree with what you say but it all comes down to being informed so that we each can make our own personally choice if that is the risk we want to take. I just wanted to share my experience and to see if anyone else had this experience. I have learnt so much from this site and received support from other RA suffers I just felt maybe my experience could help someone.

  • Absolutely!

  • I totally agree that there should be major warnings about particularly the SSRIs and SNRI classes of antidepressants, that now seem to be handed out like sweeties for pain control. These are drugs that dramatically muck around with your body chemistry and therefore produce severe withdrawal effects - even after a relatively short time on them. I firmly believe they should be a last resort and then only given if it is expected it will be a lifelong medication and the patient has been fully warned, and the simpler (and more effective proven by research) pain meds like amitryptylline tried first. I had two days of nasty mental and physical withdrawals after only a couple of days on effexor and wouldn't wish that on anyone. I also had some nasty psychological effects on cymbalta, that had my state of mind not been so good and grounded, could have easily led me to the suicidal point (impulsive thoughts). Also once off cymbalta, I couldn't believe how much more alive and happier I felt - really hadn't realised that an antidepressant could actually make you depressed.

    To be fair though, most of the doctors who are prescribing these meds haven't got a clue about the physical addiction potential, or the severity of the withdrawal effects. Please make sure you describe in full detail the severity of what happened to you to your doctor so they at least are aware the next time they decide to prescribe.

  • I took Amitriptilline for a few years for back pain ( long before diagnosis of spondyloarthritis) and when it started to give me palpitations, decided to stop taking it. I felt like death warmed up for about a month and couldn't u der stand why until much later. I think I was suffering from withdrawal symptoms. I have recently started taking it again at a lower dose because I am in so much pain and can't/won't take anything else. When the time comes to stop taking it, I will do so much more slowly. Clemmie

  • Good Morning Clemmie. I am happy to hear it is working for you which is why we take medications. The main point I was trying to alert people about is that this medication is not a drug to stop cold turkey and wish Doctors who prescribe the med stress this and go through the good and bad of this med. I wish you all the best and success in not having pain. Thank you for sharing your experience

  • It isn't working for the pain but at least it's helping me to sleep! Clemmie

  • Cimbalta never even heard of it I was put on Tramadole when I came of I was cold turkey for two weeks Then they siad morphem patches same thing dreadfull cold turkey On both times I was not war bed about any after effects at all👹

  • All I can say is "WOW.." I read your post this morning and because I had no valuable advice or knowlege of the drug Cymbalta, I didn't respond to your post...I then went to work and a co worker (who is also a friend) wanted my opinion on whether or not I noticed if she was depressed. I hadn't and asked her "why?". She then showed me a prescription that her doctor gave her. Guess what?...It was for Cymbalta!! I couldn't believe it! I showed her your post and she was shocked....To make a long story short, my co worker Barb is very thankful of your post. She looked up the drug and we both were quite disgusted that our Canadian government still allows this drug to be perscribed.

    Again thank you

    take care

    Sue

  • That's what I worry about, Sue. Your co-worker REALLY needs to discuss this with her doctor, and not ignore his advice because of an internet discussion. Cymbalta clearly does have awful side effects and withdrawal effects for some people, but not all, and it's a useful drug for many others.

  • I do agree with Flow about this. Depression is a pretty serious affliction and doctors have to weigh up the pros and cons. But online discussions are as good as any for helping with decisions.

    It's not just online discussions that can influence us. A friend who is a medical lawyer advised me never to try Gaberpentin. I took her advice to my GP who was recommending it for my nerve pain but he pointed out that my friend's cousin might more probably have taken his life because of the terrible pain of his sciatica. Okay so I tried it - it made me terribly angry and extra dizzy so I couldn't drive. I stopped it after two weeks and was immediately fine again. There is almost no medication that doesn't give me side effects or severe allergies so I'm highly sensitive and wary now. However I know people who wouldn't stop taking Gaberpentin or Pregabalin for all the tea in China. Again we are al very different and no one rule fits all with medications,

    However all these SSRI/ SNRI drugs need to be closely monitored by doctors for side effects and this is not happening yet - unlike with DMARDs and steroids. So these online discussions are very important too.

    And by the way it's not just an issue in Canada!

  • I think everyone on this site has learned something, got support, and made more aware of something. I know I have and I am thankful for everyone who takes the time to write and respond. We never stop learning including our Dr's I am sure no matter what country we live in. Like you say twitchytoes all drugs should be monitored hopefully more awarness of such subjects will get to the Dr's for they are the one who prescribes or suggest treatment plans. Have a wonderful day and thank you for your positive imput on serious subject.

  • So true. Reading the internet discussions on a drug and ignorring the advice of her doctor isn't the smartest thing to do. I neglected to write that she went to her doctor about headaches she was having. He dismissed her complaints of headaches and told her she was depressed and then gave her the presription.

    In Canada, going to a doctor is paid by the government medical plan. This means the average time spent with a doctor is less than 10minutes. She was given no exams to rule out why she has been suffering with headaches. She was just given a perscription for depression eventhough she doesn't suffer with depression.

    There are many good doctors in Canada. My friend Barb just happened to meet a not so great one.

    Take care

    Sue

  • Well said Flow.

  • Thank you Sue for sharing it with her. I was only on this 5 months and it has been now 7 days cold turkey of stopping it and I am still having withdrawl. I hope your friends depression eventually subsides. Thank you for responding, Amanda

  • That's the crazy thing, she isn't depressed. She had a complant about headaches and her doctor said she must be depressed!!

  • Nothing worse then being missed diagnosed. Hopefully she gets to the bottom of her headaches and why they are happening.

  • I have climaxed today after being on huge doses of antibiotics and managing them for Sepsis in Temporal Arteritis Biopsy scar.....forgot about a lot of my peripherAl Pain Meds including Duloxetine!!!!!! I thought I had gone mad......collapsed in hospital consulting room....crying..... ticks in hands unable to make sensible sentences vomiting...loud noise in head and zaps all over body.....thought I was dying....and turns out it was just withdrawal from That nasty medication we are speaking about....have had a dose late this afternoon....and am absolutely certain I never want to go thru this again....I will stay on it for the rest of my life.....know I'm probably raving on here but all the symptoms returning and not sure wether to take more Amitriptyline to settle,me down or a second dose of the Duloxetine.....have never felt this bad in my life and I have had 6hr Anterior/Posterior spinal fusion with impaired Bone graft harvest site....but this takes the cake ....have been searching everywhere for someone who know wat I'm talking about. And voila......holy hell Also feel like all the tendons in my body are too short???

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