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Duloxetine/Cymbalta and ME/CFS

Discussion in 'General Treatment' started by Fluffytrousers, Mar 20, 2013.

  1. Fluffytrousers

    Fluffytrousers

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    I have severe ME and started taking duloxetine when I was very ill and bedridden. I was so scared at the time I started shaking and couldn't stop so was prescribed it for anxiety. It was a lifesaver at the time. That was four years ago and although I'm still ill I thought it was time to at least try to reduce it. I still get the odd anxiety symptoms but only ever physical symptoms, not actual feelings of anxiety. Anyways for the past 2 months I have been trying to reduce it gradually and have had a lot of side effects - sore stomach, headache, insomnia etc but these have passed. The main problem is that my ME has got worse. I am confused whether this is a side effect that will go away or if its because I need the duloxetine. I have heard it helps with POTS which I have so maybe I do need it? I've had to increase the dose again as I am very limited as to what i can do and can't afford to get worse. I don't want to be on this stuff forever and the ME isn't going anywhere fast!! Has anyone else been through this?
  2. SOC

    SOC Moderator and Senior Member

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    If you are having only "physical" anxiety symptoms but are not feeling anxious, what you are likely suffering from is tachycardia, not anxiety. Tremors and tachycardia can be symptoms of some form of OI, so that might be worth looking into.

    Cymbalta can help a lot with ME pain. I'm also told that it can help a bit with POTS, but I wouldn't say it's been a noticeable help to me in that regard.

    I tried cutting back on Cymbalta to see if I still needed it, but the muscle/joint pain came back with a vengeance, so I've decided to stick with my current dosage for a while. I'll probably try cutting back again this summer when I have some freedom to feel worse for a while. ;)

    Which ME symptoms got worse when you cut back on Cymbalta? That might give somebody here a clue about whether it could be due to reducing Cymbalta or not.
    Valentijn likes this.
  3. Fluffytrousers

    Fluffytrousers

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    I only really get the anxiety symptoms (lurching stomach, fight or flight adrenaline surges) just before my period or when my ME gets worse. I don't get tremors any more. That was just the once. I do get a lot of tachycardia though but that's always when I've done too much and made my ME worse.

    Luckily I don't get much ME related pain so there are no benefits for me in that sense. I did get an increase in joint pain though when I first started to reduce the duloxetine (I also have rheumatoid arthritis) but it eased after a few days. Hope yours settles down a bit and doesn't come back with a vengeance when you try to cut down in the summer :-/

    The ME symptoms that got worse are unfortunately the nastiest ones - cognitive dysfunction, debilitating fatigue, weakness, POTS, that horrible out of kilter feeling - basically everything that stops you functioning. I've been back up to 30 mg for the past few days (was on 60, then 30 then 15) but was still struggling so took an extra dose of 30 today and its already helped. Don't know if its due to reducing the pills or if the duloxetine is helping me. Confused!
  4. SOC

    SOC Moderator and Senior Member

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    I'm hoping for the best. :D
    Ooooh, nasty! That's a lot of stuff going wrong from reducing duloxetine dosage. Confusing, indeed. The only correlation that comes to mind with those symptoms is some type of OI/POTS that the duloxetine might be helping with. Maybe treating OI before reducing duloxetine dosage might help...? Hope you figure it out soon. :hug:
  5. Fluffytrousers

    Fluffytrousers

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    Thank you! No way of treating the OI. Doc gave me some compression stockings that are too sore to wear! I'm just going to try and stick with the 30mg for a bit then if I'm still not getting better I'll have to go back up to 60mg again
    SOC likes this.
  6. liquid sky

    liquid sky Senior Member

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    Cymbalta is known to cause severe withdrawal symptoms in some people when trying to reduce the dosage. You might look those up and compare them to your symptoms.

    http://www.drugs.com/pro/cymbalta.html

    That said, I have seen Cymbalta work wonders for some people with CFS/FMS. I have also seen it cause a LOT of side effects. If you benefit from the medication and don't have intolerable side effects, I would not force a change that makes you worse. Good luck to you.
    SOC likes this.
  7. MishMash

    MishMash *****

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    I would rather smoke opium in an old fashioned, chinese opium den with the other hopheads then take Cymbalta. At least everybody *knows* by now that painkillers will get you addicted, make your life a hell getting off them, cause you to increase the dosage. The difference is they don't spend billiions on really annoying ads of pathetic, middle-aged adults standing there with phony wan smiles on their faces. They look like brainlesss zombies. Basically to tell you that it is as safe and harmless as the morning dew.
  8. Fluffytrousers

    Fluffytrousers

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    I have seen a lot of stuff on the net about cymbalta withdrawal which is why I'm more confused about what might be side effects and what isn't. Plus everyone is different and if you have a neurological disease like ME it's only going to confuse things even more. If I can stick with 30 for now I'll be happy that at least I've made some progress. I don't want to stop taking it if its helping me but I also don't want to take it for years if I don't have to!
    SOC likes this.
  9. Wednesday's Child

    Wednesday's Child

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    Hi Fluffytrousers,

    I really feel for you. I've been on Cymbalta for almost ten years now. Most of that time I was on 60mg, but I also spent a fair amount of time on 90, 120 and even 180mg! I have horrendous side effects when I try to reduce. After two years of gradually reducing my intake, I am now down to 4mg, and I'm so happy :) If I reduce it by 1mg at a time, stay on that dose for a week to a month and then reduce again, I have no side effects. I'm also feeling more energetic, the more I reduce. My CFS coincided with me taking Cymbalta for depression...I'm not sure if the depression started the CFS, the Cymbalta started it or something else entirely, but it feels very good to be coming off the evil Cymbalta.

    Here in Germany, Cymbalta is available in 60 and 30mg. Yentreve is another brand name for duloxetine when used for urinary incontinence, and is available in 40 and 20mg. I reduced from 60 to 40 to 30 to 20 every six months or so, and had three weeks of horrendous side effects each time. What changed things was opening up the capsules and counting the beads. Some people talk about how they do it here:
    http://www.cymbaltawithdrawal.com/forum/9-weaning-off-cymbalta/

    Best of luck.
    Fluffytrousers likes this.
  10. Fluffytrousers

    Fluffytrousers

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    Thanks Wednesdays child. That's really helpful. What side effects have you had? Did it feel like your ME was worse? I'm going to look into getting 20mg caps. Not sure if you can get them in the uk. Really handy to know about the Yentreve. I have read about counting beads. Nightmare! But seems to be the only way to do it. Well done to you for getting this far with it! You must have the patience of a saint!!
  11. EnduringAngel

    EnduringAngel

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    I know exactly where you are coming from, going though the same myself at the moment, so feel free to DM me about it.

    I am nearly 31 and have been on anti-ds since I was 18.
    I was on venlafaxine at very high doses, until they realised I had ME and not depression. I then reduced the dose but moved onto duloxetine when I was diagnosed with fibro.
    That was around 2007 so have been on these type of meds for a very long time, and I really dont like it.

    Recently I started on LDN which helped a lot, I was able to drop from 60mg to 30mg with no side effects.
    But trying to come off from the 30 has been a nightmare, have been splitting the capsules, and taking 15mg for a few weeks, but on sun night took my last dose off 15mg, its only been two days, and already I feel so ill, although there is lots else going on with my body, I know these symptoms, the brain zap symptoms, I have gotten from before when with drawing from venlafaxine.

    I hope they will stop and I am doing the right thing stopping them, I just dont trust bigpharma but am worried I have been on these meds for so long, coming off them wont be possible.
    I should never have gone on them in the first place.

    Thanks so much for the info about Yentreve I will look into it too.

    A x
  12. Wednesday's Child

    Wednesday's Child

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    EnduringAngel, I feel your pain. It's such an awful feeling. I would never have been able to stop cold turkey at 15mg. When I went from 30 to 20, I got brain zaps, my POTS was far worse, I was nauseous, even more weak than usual. That's all I can remember. You CAN get Yentreve in the UK, I got them when I was there - I hope you have a good doctor who can disregard the NICE guidelines. Many doctors say that you should be able to discontinue at 30mg no problem. Worse, many recommend taking 30mg every second day for a while, when the pharmakinetics indicate that it has a half-life of less than 24 hours, i.e. if you take it every second day, the level in your bloodstream varies substantially.

    Fluffytrousers, rereading your initial post again, it sounds like you're feeling stuck at the moment, with a duloxetine dose and ME symptoms that don't change. I think you're right to try to come off the duloxetine, and if you find you're worse after six weeks of being off it, you can always restart. It's worth a try.
  13. EnduringAngel

    EnduringAngel

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    Thanks so much for replying. I think being on LDN has helped with a lot but with so many conditions and so many meds its hard for me to know what's doing what! and if I'm doing the right thing.

    How long have you been off it now and how do you feel?

    A x
  14. Wednesday's Child

    Wednesday's Child

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    I'm not off it yet...I'm currently on 3mg per day, just three weeks to go until I'm finished! LDN sounds really interesting...I'm torn between wanting to try something new as it might help me, and my wish to minimise the number of drugs I'm on. I'm feeling better, more alert, on less duloxetine, without a doubt.
  15. EnduringAngel

    EnduringAngel

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    Well LDN isn't a miracle, however it has helped me in so many ways.
    Since taking it Ive been able to come off duloxetine (just 1 week so far) I was on 60mg, reduce my melatonin from 9-3mg. Stop taking my dihydracodiene (sp) and just take the occasional paracetamol for pain.
    I think because it can help with so many different things, eg pain, energy and depression it's well worth trying.As long as you start low and go slow! that my motto!!

    http://www.ldnresearchtrust.org/ has lots of info about it.

    A x
    Sushi likes this.
  16. EnduringAngel

    EnduringAngel

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    Yes I agree with you now, since I posted that message I took an overdose trying to come off it.
    Am fine now I've been without it for months.
    I looked into it and several people committed suicide during duloxetine trials, am shocked it made it to the market.
  17. EnduringAngel

    EnduringAngel

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    I think LDN may be a good alternative.
    Thanks so much for comments. X
  18. SOC

    SOC Moderator and Senior Member

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    I can't agree with you on that.

    I took up to 90mg of Cymbalta for 7 or 8 years for ME/CFS pain. It worked well for me without any noticeable side effects. Now that I'm feeling better, I'm tapering off to see if I no longer need it for pain. I'm reducing by 15mg every 2 weeks. I'm down to 30 mg (15 mg starting tomorrow) and haven't had any adverse side effects during this tapering off period.

    Cymbalta is also used for depression, so it is not unexpected that there will be some suicides/attempts while people are taking it. That's the sad reality of depression -- not everyone gets adequate treatment in time. That does not mean it causes suicide. Correlation is not causation.

    Cymbalta is not a good medication for everyone. Cymbalta, like all antidepressants, many pain meds, and other psychoactive drugs, affect neurochemistry. That's their whole purpose. If your neurochemistry does not need, or worse, already has too much of the neurochemical the med is increasing, you can have a bad reaction to it.

    Just because is wasn't a good med for you, doesn't make it EVIL. It is a serious med that needs to be used with care by both patients and docs, that's all.
    Sushi and heapsreal like this.
  19. meandthecat

    meandthecat

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    I used Duloxetine for pain, it was amazing, in less than a week the mind numbing aches and stabbing had reduced by 80% and I was able to work more. I was angling for milnacipran but the GP wouldn't hear of it. After 2 yrs the side effects were taking their toll and I was getting worse and worse. If not evil this drug definately leans toward the dark side.

    Reading the other posts is like reliving those dark days which cullminated in ascites and swelling up like a balloon. I gained over a stone and an umbillical hernia. I was on 30mg and split capsules to wean myself off; I bottled out of the first 2 attempts because I became so sick and the first week clear was Hell!

    I used a Tens machine to cope with the pain that welled up and it sort of worked. I now live with pain but I feel alive, which I did not when using Duloxetine.

    We are all different but don't take this drug lightly.

    onward and upward
  20. SOC

    SOC Moderator and Senior Member

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    I was not lucky, you were unlucky. The majority of patients taking Cymbalta do fine. A minority have serious side effects. You are one of the unfortunate minority. That's a bummer for you, but it doesn't make the med evil.

    Cymbalta didn't work for you, we get it. That happens. That doesn't make it evil or wrong for the majority of people, just a minority of which you are one. I had a horrible reaction to a particular generic brand of another med -- far worse than you've described for Cymbalta. That doesn't make it evil. It means that that particular generic is bad for me and possibly a minority of other people trying the med. It is beneficial for a majority of the people who take it, I'm just not one of them.

    Don't try pulling "I'm sicker than you" rank on me. For your information, I have been severely affected with ME/CFS. I was bedbound for some time and was unable to care for myself for years. I sought out aggressive treatment, tried every treatment my ME/CFS specialists recommended -- without whining about the difficulties -- worked hard at following all treatments to the letter, and spent a lot of money getting where I am today in terms of health. That doesn't work for everybody, but it doesn't make me a lesser patient because it did work for me.

    I know some people with ME never return to work. I am not ignorant of the realities of this illness. I also know that some people who have been severely affected but managed to get appropriate treatment for the way their body is affected have been able to improve their functionality significantly.

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