About to start Duloxetine: Just... - Fibromyalgia Acti...

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About to start Duloxetine

NannyNooNoo profile image
24 Replies

Just wondering the best time of day to take Duloxetine? Prescribed 60mg daily. Any tips/comments will be much appreciated. Previously taken Gabapentin, came off that because it caused anxiety; tried Nortryptiline early in December and that seemed to make me quite ill with faintness/nausea. So I’m a bit wary of trying another one, though I know it needs to be done!

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NannyNooNoo
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24 Replies
Arymretep profile image
Arymretep

Hi, I started on duloxetine last May after trying two other meds which made me ill too, they usually start you on a low dose for your body to get used to it, I started on 20mg and on 40 now, and it’s helped so much with my anxiety

Horner profile image
Horner

Duloxetine makes you sweat lots and lots I was on 90mg have went through years of telling Gp didn’t know why I read the leaflet I am now on 30mg still sweating just not as much

adri_ela2000 profile image
adri_ela2000 in reply toHorner

Same for me.I sweat a lot.Now,I am going to stop it and on 10th January my GP will tell me what to take in the future.I took it around 8 pm.

557755 profile image
557755 in reply toHorner

Definitely lots and lots of sweating but huge improvement in overall pain. I'm on 120 in a single dose that I take at night

denny_the_wench profile image
denny_the_wench

Like the others, having got through the initial side effects in about 3-4 weeks, I still have head sweats (just my head - not the rest of me, bizarrely), and have been taking it now for a year or so. I'm now on 60mg, started at 30mg and with trial and error I take mine at 10.30 am, this means that I normally get a sweat around lunchtime as the pill starts to take effect so I'm not rushing around at the time and therefore it's not so bad. If I take it at night then I found I was waking up soaking so that meant a broken sleep which I was trying to avoid.

IF you like a tipple then have a fan and tissues with you as no matter what time of the day, as the 1st flash of alcohol hits my system I will have a sweat - I call it my "half a glass" sweat LOL it goes off quite quickly though.

Anxiety wise I'm so much better though, and to interfere with the fibro pains it has certainly lessened them to a point that I can live with. My sleep is also now much more settled and I'm having 6.5 to 7 hours good through the night now. I've also been able to cut down the codeine-based pain killers to practically nothing, which has to be a good thing. I'm much clearer-headed in the afternoon as well - the fibro fog and lack of concentration disappear so I've been able to get back to a part-time admin job.

Rather strangely the sweat also helps me to know when I've done too much too quickly - i.e. used up my fibro spoons, so now instead of trying to finish something and ending up collapsed, at the 1st signs of the sweat I try to sit down, breathe and refocus.

Give it a try - I was on gabapentin and amitriptyline and neither of them suited me either, good luck to you x

BaffledKaffy profile image
BaffledKaffy

I am in the third year of tapering off this drug I call poison. I would RUN from any doc who prescribes this. Its horrible side effects can build later and these side effects are far worse than anything you think it will help. Just speaking from many years of personal experience ~ I am NOT medically trained.

in reply toBaffledKaffy

I found the same unfortunately and withdrawal was a nightmare for months. 6 years later and I still suffer from long lasting effects from it. I guess I was one of the unlucky ones. But there are a number of people who have had these issues.

NannyNooNoo profile image
NannyNooNoo in reply toBaffledKaffy

Thankyou - do you mind if I ask how long you took them for? And what your side effects were?

BaffledKaffy profile image
BaffledKaffy in reply toNannyNooNoo

I took them for 8 years ~ I was taking them to help with horrible back pain from 9 inoperable, degenerated spine discs, not depression. I have enough health issues that it took me awhile to realize the effects were from the drug. The worst were horrible ear noises, like an insect was in my ear, wings beating like a drum … (others have reported these). Suicidal thoughts, rage, the effects go on and on. There are web sites that list many effects. And as others have said, please research to be informed. This is best done before starting any new drug.

NannyNooNoo profile image
NannyNooNoo in reply toBaffledKaffy

Thankyou, and yes I’m doing some research hence questions 😂😂

Inthesticks profile image
Inthesticks

I take 60mg twice daily, but I started off on 1x 60mg tab like you. My GP advised to take it in the morning. Now I have another one in the evening. It has been a wonder drug for my Fibromyalgia and no side effects. I hope it helps you as much as it has helped me.

Kittygal profile image
Kittygal

Hi NannyNooNoo, I have being taking Duloxetine for over 12mts now and they are working well, I take 120mg every morning after my breakfast....they have some side effects at the beginning but after 2wks they settled down, the only side effect now is I get sweat flashes...but I am going through menopause, so it's mostly to do with that, however some antidepressants can cause that to....

I am also prescribed Nefopan these work along side my Duloxetine but remember everyone is different....I also have lidocaine patches and I have been using essential oils for arthritis....

Hope this helps...

Take care

Kitty Kat x

Hi, everyone is different and what suits one person won't suit another, but my advice would be to research it before taking it. Ask your doctor the questions and check out the data on side effects and withdrawal. Best of luck.

Lovetoboat profile image
Lovetoboat

I have tried all kinds of meds. I have PTSD and severe anxiety disorder also with my fibromyalgia…I take sertraline for my PTSD…gabapentin for the fibromyalgia. If you don’t have a weighted blanket, I suggest that you get one. It is well worth it. It took me a while to get the amount of gabapentin correct. If I take to much …it will make me sleepy. The best thing that I ca suggest is keep moving. I know it hurts. I use to sell mobility equipment. I started clients with canes to a walker …to a wheel chair…to a power chair.I will not be the person that will not move because I have pain.

Even my pharmacist says how well I am doing compared to others diagnosed after me. Yes, everyone is different…but…this is what works for me.

If Ondamed is available in your area… try it… it helped med. Look it up.

With the pandemic I haven’t been able to get me bi-weekly treatments. But, it sure helped.

Keep your chin up…there are sunny days ahead.

NannyNooNoo profile image
NannyNooNoo in reply toLovetoboat

Thankyou, I have got a weighted blanket, and I make sure to get plenty of exercise - just considering my next options 🙂🙂

Lovetoboat profile image
Lovetoboat in reply toNannyNooNoo

Then, you are on the right track. Take it from someone that has worked in the medical industry(I say industry as I am not a doctor or nurse-equipment Was my specialty) exercise , looking after yourself , not… everyone else first, is a huge key to being the best … healthiest that you can be. All the best,

Sandy247 profile image
Sandy247

Hi NannyNooNoi

I've found the best time to take my Duloxetine is just before I go to bed. This means if it causes any headaches, whilst your body is getting used to your new medication (Duloxetine) you will sleep through them.

Hope this helps.

Take care

NannyNooNoo profile image
NannyNooNoo in reply toSandy247

Thankyou

wallflower_fairy profile image
wallflower_fairy

Hi NannyNooNoo,

I take a Duloxetine (40mg) and personally find it really helpful.

I have other issues aside from Fibro mainly related to mental health. Because of this, I'm vulnerable to getting overwhelmed emotionally and even going into meltdown. This will then impact my Fibro.

Since being on it, I've had far fewer meltdowns, virtually none, and the few I've had have been more manageable. I'm much more able to stay on an even keel. I take it as a dual purpose for both Fibro and mental health, and find it helpful to both. Started taking it in May 2019.

Based on what I've read, and heard, as well as my own experience: Some people it doesn't seem to suit at all and, the people it doesn't suit really don't get on with it. On the other hand, the people who do do well on it seem to do really well on it.

Yes, some people have terrible side effects. But I've read other accounts of people who think it's saved their life and I think I might just be one of these people. I can't say for certain because I've had a lot that's helped me to improve but I'd certainly say it was the factor.

This is just what I've come across. I guess we're all different, so different medication will work for different people.

I'm not a doctor, but the one thing I'm concerned about is that they started you on such a high dose. I started on 20mg, then increased to 30mg before increasing me to 40mg.

Even on only 20mg, I had a few side effects to adjust to and it took me some time to get to know how it affected my body, and when to take it, etc.

For me, the main side effect was just feeling a bit sick and having less of an appetite, even on the lowest dose. I found taking it at night helpful for this.

I also heard you can have initial side effects when you first go on them anyway as you get used to being on them. For example, my GP told me in the first few weeks they may make me feel a bit jittery before I adjust to being on them and then I'd feel better. I don't remember having this but some people might do in the beginning.

That's why the initial dose they're putting you on is something I'm concerned about. Obviously, your doctor knows you best. It might just be worth having a chat with them about it.

Although please don't delay treatment because of something you've read on HU.

I read about people's bad experiences on Duloxetine in this community and they scared me off somewhat. So I didn't actually start taking it straight away and put it off.

If I hadn't let these stories get to me, then they would've helped me a lot sooner.

Just be cautiously optimistic, trust your gut feeling (although don't confuse this with normal anxiety). Listen to what your doctor has to say but, if you feel you need one, ask for a second opinion.

As the patient, you know yourself best.

In my opinion, a good GP-patient relationship will encourage the patient to have ownership and agency over managing their condition(s), with the GP guiding overseeing, advising and guiding, as well as prescribing appropriate medication based on getting to know their patient and their history.

A good relationship with your GP shouldn't be underestimated and can make all the difference. 😊

Xx

NannyNooNoo profile image
NannyNooNoo in reply towallflower_fairy

Thankyou - that’s very helpful. I do think the dose is too high to start - in fact, I’ve not taken any since my first dose! I’m sure I shouldn’t have felt as bad as I did, so wanted to check other peoples experiences and consider what I think/want to do next.

Your first dose is 60 mg?

NannyNooNoo profile image
NannyNooNoo in reply to

It is - I only took the first dose & haven’t taken it since! I think it’s too high as a starting dose🤷‍♀️🤷‍♀️.

Ask your Dr to start you on 30 mg and work up from there. It won't make you feel as woozy ..

When I started taking it, I started on 30 mg in the morning for a week then 30 mg in the morning and 30 mg at night for a week then depending on how I felt.. I'd go up to 30 mg in the morning and 60 mg at night.. and so on.

A Pharmacist can advise how to take if you can't get to speak to a GP .

Hope this helps

Usandthem profile image
Usandthem

Hi I take mine in the morning about 7am, 120mg with 300mg of pregablin. Rheumatologist recommended this and it seems to work for me. We are all different though remember so you will work out what's best for your body. Talk to your GP again or the pharmacist they will be a good help if you ask. It's hard really finding the best for you but it will happen. It's the old 'trial and error' saying again. Never thought I could really begin to dislike a saying but it's true. Hope you find your way and remember everyone is here to support and help. Peace and love ✌💕

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