124 replies to this topic

[jc619]

Hi,

I was prescribed 30mg Duloxetine/Cymbalta about 3 and a half weeks ago for a combination of mild mental health issues and neuropathic pain.

3 weeks in and I'm experiencing what I think may be side-effects that are messing up the quality of my life. Most notably I have developed loud tinnitus that is stopping me sleeping (and so any positive mental health effects are being wiped out). In myself I don't really feel any difference - just the side-effects!

I'm going to talk to the doctor about stopping the meds and need some advice. I'm figuring it's best to do this sooner than later, before a level of dependency is established.

I read that duloxetine needs to be tapered, which makes sense. The doctors/NHS in the UK will recommend halving the dose in week 1, and then halving again in week 2, and then stopping. But I've found some pretty scary stuff online where people recommend a very slow taper, splitting and re-constructing capsules to lower doses by 10% a week, and holding each taper for 2 weeks, even if you've only used them for a short while.

I'm a bit confused, as it seems strange to taper for what will be 20 weeks, after only being on them for 3 weeks. Isn't that more likely to cause dependency? I'm on a fairly low dose, does that make a difference? On top of that, I'm not sure my doctor will support this approach and just tell me to taper for 2 weeks and so I'll run out of tablets.

Any help from anyone who has stopped taking duloxetine/cymbalta is greatly appreciated.

[fishinghat]

Welcome jc619

 

"I'm figuring it's best to do this sooner than later, before a level of dependency is established."

Absolutely!!

 

"I'm a bit confused, as it seems strange to taper for what will be 20 weeks, after only being on them for 3 weeks. Isn't that more likely to cause dependency?"

I agree.

 

While I am not a dr i have been on this site for 10 years and have seen a lot. In general we normally recommend a very slow taper over 1 to 3 years for those who have been on a standard dose of Cymbalta for several months or more. I have noticed though that those who have been on it a short amount of time (like yourself) often wind up with a slow elongated withdrawal when they slowly taper off. At this point my suggestion would be to stop, cold turkey, and keep a few beads around to take if any serious withdrawal occurs. Now mind you this is just an educated guess and no guarantees. Even if it is an issues, you could always go back off it and taper slowly anyway.

 

Although Cymbalta withdrawal can be very severe there are many who never suffer any withdrawal. Maybe you could be one of the lucky ones.

 

I hope this helps.

[jc619]

Thanks Fishinghat,

 

My doctor recommended  taking a tablet every 2 days in week 1, and then every 3 days in week 2. Then stopping. Do you think that's better than a slow taper?

 

Alternatively I could cut down to half a tablet each day (I've bought some empty capsules).

 

I knew I was going to stop taking them, so pre-emptively didn't take one last night. I've actually felt pretty ropey today, which has surprised me. So I'm not sure how I feel about cold-turkey.

 

So if we take slow-taper off the table, which is better? - the 2 week reduction he's suggested, the gradual reduction over 2 weeks which would involve me making new capsules, or cold turkey?

 

By the way, you say keep a few beads handy - do you mean the individal little beads inside the capsules? Does that make a difference? That's crazy!

 

All opinions are invaluable.

[invalidusername]

Hi JC619,

 

Nice to see another fellow Brit in the forums!! I know the NHS very well and most know very little about these drugs, so whilst Hat and myself aren't MD's, we have seen thousands of people coming off this drug which doctors have not. They are programmed to tell you whatever the pharmaceutical reps tell them which is complete rubbish. 

 

30mg is a very mild dose and three weeks is not a long time, but sufficient to have made a few neurological changes. But if all you have is tinnitus, then I would agree with Hat to just let go and stop cold turkey, or at the very least 50% every day for 5 days and stop. None of the rubbish about every other day, and every 3 days - that will make it messed up for you due to the half life of the Cymbalta. It is designed to be taken every day. It would be like stuffing your face with food one day and not eating for 2 more days. It is just not done.

 

IF you cold cold turkey, you might feel a but uncomfortable for 5-10 days at the most, but again, if all you have at the moment is the tinnitus, I cannot see there being a problem. 

 

Just bear in mind for the future that anti-depressants can take up to 10 weeks to have the desired effect. But if the tinnitus has been there for 2-3 weeks, it is unlikely to go away. I had the same with venlafaxine. Drove me mad!!! I had to come off them - so I totally understand.

 

So summary. Stop now. If you get some odd things going on, come back here and we will let you know what to do, but my bet is that you won't have much to worry about.

 

IUN

[fishinghat]

As usual I fully agree with IUN. The every other day is a bad move and even the FDA recommends against it.

[jc619]

Thanks guys,

 

that all sounds like really good advice. 

 

I think I mentioned that I pre-empted the doctor's advice and didn't take a tablet at all on Sunday night. By Monday I was feeling pretty jittery, and then on Monday evening I was hit my really bad burning/pain in my feet (I was put on duloxetine as I have recently been diagnosed with peripheral neuropathy, but it's early days and this was much worse that I experienced off the tablets, and quite worrying) and lots of skin crawling. 

 

I took a full tablet last night (as advised by the doctor) and much of it has gone away this morning after a pretty uncomfortable night. 

 

So I fully agree the on-off cycle is not a good one! And based on last night, I'm a bit wary of cold-turkey.

 

So with all this in mind do you think now I should head onto a reduced dose? I had figured a week at 50%, and then a week at 25%. But I'm guessing and you guys know more than me (and my doctor!).

 

Invalidusername suggest 50% for 5 days and then stop (thanks for the advice by the way).  Or, I could go 50% for 5 days and see if I get withrawals after that, and if I do drop to 25% for a few days.

 

I also saw this post here https://www.cymbalta...g-after-3-weeks, where the guy's in a similar position to me and a 10% reduction bead-counting approach is recommended.

 

Any thoughts?

[fishinghat]

The answer is not clear here JC. Any of those ideas may be successful but based on your experience with dropping one capsule I would say you will have some repercussions anyway you go. At this point it is just an educated guess as which route to take. We all react a little differently. 

 

"Or, I could go 50% for 5 days and see if I get withrawals after that, and if I do drop to 25% for a few days." Good starting point I guess. I would suggest you keep some loose beads available during this wean. If things get too bad you can always take just a few beads (4 or 50 to help take the edge off. Also in the ebook is a list of things that can possibly help to reduce the withdrawal symptoms during this time. If you have trouble finding it let me know or you can do a search on this site for "Things that can help". It should pop up.

[jc619]

Thanks Fishinghat,

 

I'm hopeful that what happened yesterday was down to 48 hours totally cold turkey, but having read so many horror stories on the forum I'm a bit nervous now. I had no other symptoms, and I was experienceing some foot burning and skin-crawling before I stopped the duloxetine.

 

I was a bit wobbly mentally before starting duloxetine, but was prescribed them also for recently-diagnosed peripheral neuropathy. I wasn't actually in much pain before the doctor put me on them. He's recently qualified and found something that he thought could help both things, and I foolishly just took them as I was told they would help. I think he was just trying to find something to help me with the mental impact of life, the diagnosis and potential symptoms in the future. I'm more than a bit annoyed with him now I have tinnitus, burning feet and now need to navigate coming off the tablets! Coming to terms with peripheral neuropathy and trying to remain positive was enough, and I feel I've spent 2 weeks now concentrating on Tinnitus instead (there is obviously a different forum for that!), and now it's withdrawal.

 

On the flip-side, I think my tinnitus has been lower today than it has for a week or so, and I slept a bit better last night, so that is good at least and could be a positive from cutting my dose. And today my mind has been much clearer, I've been more productive than I have been in about a month!

 

I appreciate that you say this is just a guess, but I'm figuring with yours and Invalidusername's experience, that your guesses are probably much better than mine. I would have just followed the doctor and look where that got me! I suppose another alternative would be to cut even more slowly - 20mg to 10mg to 5mg then I'm out. I guess all I can do is ask in all honesty what you would do in my shoes and then it's up to me if I follow the advice. Is it Ok if we take that approach?

 

I asked a question about beads on a different post yetserday. There are 170 beads in each of my my tablets, can 4 microbeads make that much of a difference? How long do they take to help? And do you put them into a capsule to take them?

 

Thanks in advance, JC619.

[fishinghat]

The loger it takes to taper the more likely you will have worse symptoms given you were only on it 3 1/2 weeks. 

 

I still like "Or, I could go 50% for 5 days and see if I get withdrawals after that, and if I do drop to 25% for a few days.". It is a shorter time span. And yes a few beads can make a very big difference. Besides if you had issues and took say 25 beads that would be just that much more to come off of later. If you take 4 beads and don't feel any better in 2 or 3 hours you can always take a few more BUT once you take 25 beads you are stuck with what could be an unnecessarily high dose.

[jc619]

Thanks Fishinghat, that's really useful and some very good points. I'll try a 50% dose tonight and see how it goes. 

 

Fully take your points about the beads as well. It just amazes me that 4 beads can make a difference. I guess it goes to show just how potent duloxetine/cymbalta is. As a newbie here, it's mind-blowing.

 

How do you take 4 beads? I think they're too small to know if I'd swallowed them. Do you put them in a capsule? I was wondering if I should get some prepared in advance.

[invalidusername]

Having read through today's additions, I would still hold with my 50% for 5 days and then see how you feel. You could always go 25% for another 5 days, but as Hat said, the longer your string it out, the longer the Cymbalta has to make changes to your neurochemistry. 

 

So you stopped for 2 days... and went through a bit of a nightmare by the sounds. No surprise.

 

Hopefully you have taken a 50% dose today - do another 5 and see how you feel. My guess is that you will feel a little uncomfortable initially, but if you feel fine by Saturday, then just stop. If there is still a lingering sign of skin crawling and feet problems, then got 25% for a MAX 5 more days, but then STOP. Logically, it will only be a few days. Don't let these members who have been down to the last bead get in your head. 

 

Being a research for the last 7 years, I can tell you how strong the placebo effect can be. Three weeks on this God-awful stuff is not long. You will be fine.

 

Don't forget we are here for you whenever you need us...

 

IUN

[fishinghat]

Most people do bead counting over a long period of time so they just go to their pharmacy or Amazon and just order some empty acid resistant capsules. You don't want to take them without capsules as they can really do a job on your digestive tract. The ebook has some details on that chemistry. 

 

iUN may be right on his approach the only way is to just jump in and try and adjust as you go. Once you reduce the dosage it takes usually around 3 or 4 days for most to really get hit with a withdrawal. After 5 days and no issues then you should be OK.

[jc619]

Thanks again guys, great advice. 

 

I have just one more question. My duloxetine are labeled as 'Gastro-resistant capsules, hard'. Inside are micro-beads. 

 

The capsules I've bought from Amazon are made from Hydroxypropyl Methyl Cellulose (HPMC). I bought these because it says on the Cymbaltahurtsworse website:

 

Enteric capsules should not be used. The beads already have an enteric coating.

 

But in your reply earlier you said to some empty acid resistant capsules.

 

Have I bought the wrong capsules? For now I'll be OK as I can use the original ones. But do I need to get some different ones?

[invalidusername]

I am going to post this to the additional post by our friend here JC619;

 

https://www.cymbalta...ere/#entry99066

 

Please refer here for an ongoing discussion of the above.

[jc619]

Hi IUN, 

 

Out of interest, you said you had tinnitus before from a different med? I appreciate it may be totally different, or indeed that my tinnitus may be caused by something else entirely unrelated. But how long did your tinnitus last?

 

Thanks,

 

JC619.

[invalidusername]

HI JC,

 

I was on them for 10 days and the tinnitus started on day 3, so much like you, I gave it some time, but really couldn't put up with it so immediately swapped back to my previous med, and from memory I noticed an improvement within 3 days, and quite sure after another 48 hours, it had all gone.

 

Might take a little bit longer for you as I cold turkeyed rather than tapered, but don't worry...

 

We have serotonin receptors all over our brain including our EARS. So what has happened is the Cymbalta, in making the adjustments to these receptors, have interfered with some part of the inner ear - be that the canal, membrane etc. This won't be the case for all such drugs, but in this case, it has.

 

Hold in there, it will soon be gone.

[jc619]

Hey guys,

 

Thanks for that IUN. Fingers crossed!

 

So here's my update. Because I started my taper a bit strangely with 48 hours cold-turkey advised by the doctor, here are my doses so far:

 

Up until Saturday - 30mg a day

Sunday - no capsule

Monday  - 30mg

Tuesday - 15mg

Wednesday - 15mg

Thursday - 15mg

 

Do you think that puts me on day 3 of the wean, or day 5? I realised today that you could look at it either way if you say that Monday's capsule was 15g/day split over Sunday and Monday.

 

I'm actually feeling surprisingly jittery/anxious this evening, which has surprised me a bit. A bit of CBD oil has calmed me though. 

 

Thanks in advance,

 

JC619.

[fishinghat]

Doing great so far but it is early. hang in there at 15 mg for 2 or 3 days and then if no serious issues do another drop. What do you think IUN?

[jc619]

Thanks Fishinghat, and thanks of the encouragement.

 

I think we were saying before that I'd go for 5 days and then try to stop, then maybe a final drop of 7.5mg only if I needed to?

 

My jitteriness/anxiety was actually pretty short lived tonight, I fell asleep and woke up in a bit of a state. Maybe it was a blip after a stressful day at work. I'm feeling pretty good now.

 

JC619.

[invalidusername]

Up until Saturday - 30mg a day

Sunday - no capsule

Monday  - 30mg

Tuesday - 15mg

Wednesday - 15mg

Thursday - 15mg

 

If you were on 30 mg to start with and you missed a few, then yes, give it a few more days, but I would start 15mg on Monday as your system will be depleted after Sunday already and you will get a spike that you don't want. 

 

Then just see how you go next week and you should find things don't get too bad and you can quit on the Friday.

 

But as Hat said before, keep some beads aside in case you have an aftershock which a short dose will cure...

 

IUN

[jc619]

Thanks guys,

 

IUN, I think maybe I didn't explain myself very well. The list I put up is what I've done so far:

 

Up until Saturday - 3.5 weeks @30mg a day

Sunday - no capsule (doctors recommendation, that caused what I think were some symptoms and for me to change tactics)

Monday  - 30mg

Tuesday - 15mg

Wednesday - 15mg

Thursday - 15mg

Friday = today, will be 15mg.

 

Today will be day 4 @15mg. So by tomorrow (Saturday) I will have done 15mg for 5 days.

 

Before, we said maybe I should try and stop dead after I'd done 15mg for 5 days. Now it looks as though we're saying that I drop down to 7.5 mg from Sunday? Is that change because I've had a few withdrawal symptoms?

 

And can I check, I assume you're not saying I should miss a dose on Sunday, before I start on 7.5mg on Monday? I go straight from 15mg to 7.5mg?

 

Can you guys also give me a bit of guidance on the spare beads please? Apologies for my all the questions, this is all new to me. I feel the bead thing is something I could mess up, and accidentally find myself drawing this out for longer and making things more complicated.

 

I assume I need to make them up into capsules?

How may should I have in each capsule (my 7.5mg capsules will have around 41 beads in each)?

When would I take them? What do you class as an 'after-shock'?

Are these for after I've stopped entirely?

And if after I've stopped, how long would I have them as a backup?

[invalidusername]

Ok - that makes sense - my apologies!

 

So it has been now closer to a month on the 30mg, so there might be a few more symptoms flying around. 

 

Whatever you do, do NOT miss a dose, regardless of what the doctor tells you. If he somehow finds out, just tell him to read the PIL (Patient Information Leaflet) - its all in there.

 

Given the length of time, I would go to 7.5mg for a few days. Unless you are feeling really unsure with symptoms, I would start the 7.5mg tomorrow. So yes, direct from 15 to 7.5mg is fine.

 

You will need to make up the capsules. 

 

It is quite a simple, if bloody annoying, process. 

 

First empty the contents of one of the capsules onto some black fabric on a flat surface. When separating the two halves of the capsules, do so by twisting each half in opposite directions. If this proves difficult, try pinching one half very slightly and it should pop open.

 

Then work out how many beads you need to make up the 7.5mg dose. So... 7.5mg is 25% of 30mg. So if you are averaging 41 beads per capsules, you simple divide this by 25%... so 10 beads (rounding to the nearest whole number from 10.25).

 

Count out 10 beads. Try to pick out 10 that are uniform in size. There make be shards of coating from some of the cheaper pharma's - you will know if you see this. 

 

Put those 10 beads back into the capsule from which they came (or one of you new ones), and push the two halfs of the capsule back together.

 

Job done! 

 

Make 5 of these up and make sure you don't get them confused with those with 30mg inside. Easily done.

 

Take every day starting tomorrow 'til next Weds and see how you feel.

 

Any new symptoms - let us know, but you should just find things are ok. 

 

An after shock is just as it sounds. When you have stopped taking the cymbalta totally, you might find after 3-5 days that you get one of the symptoms come and should it be that bad, then take a few beads which will help you. But after 5 days of not taking any, you will be in the clear. After that, you won't need to keep anything. 

 

But empty caps are always useful. I use a lot of nootropic powders which I use the capsules for. The last forever, so hang on to them.

 

Hope that covers you for now and please keep us updated!! 

 

Hope you are doing well....

 

IUN

[jc619]

Thanks IUN,

 

I've been trying to work out my days in case folks find it confusing. Does this make sense?

 

Days 1-25:    I was on 30mg for 3 and a half weeks when I first tried to start the wean

Day 26:         I skipped a dose on my doctor's advice - day on, day off

Day 27:         I then took a full 30mg dose after missing the day, on doctor's advice

Days 28-31:  Since then I've been on a half-dose of 15mg for the last 4 days on you guy's advice (thanks!)

 

From tomorrow the plan is:

Day 32:          Another 15mg tomorrow. This will be the end of my 5 days on half-dose of 15mg

Day 33-37:    Dropping to 7.5mg on Sunday for the next 5 days. So my last day will hopefully be next Thursday.

 

Do you agree with that schedule?

 

I understand the ins and outs of splitting the capsules - I've painstakingly learned last week when making my 15mg capsules! Thanks for the guide though - black fabric - good tip which I wish I'd had last week.

 

What I don't understand is the backup/emergency capsules:

 

How may beads/what dose should I have in each backup capsule (my 7.5mg capsules will have around 41 beads in each)?

If I do need to take a backup capsule, when am I in the all-clear? Is it 5 days without symptoms?

 

One of my problems is that the symptoms mimic the peripheral neuropathy that I was first put onto duloxetine for. ie. crawling skin & burning feet. So it's hard to tell if it's a withdrawal symptom or the neuropathy, or a bit of both.

[invalidusername]

Your withdrawal plan make perfect sense - 100%. 

 

Regrading the backup, from each 7.5mg capsule you will make up will leave you 30 beads, right?

 

Put those spare beads somewhere else dry and free from moisture. When you make your 5 capsules of 10 beads each, this should leave you with plenty of beads left over.

 

If for any reason your symptoms get worse when you stop next weds, then you can pop a few beads in a spare capsule to ease your discomfort. It is as simple as that.

 

Regarding the symptoms that occurred before you started taking the Cymbalta, you will need to write these off because this will mean you are back to your status quo - your pint before you started taking the cymbalta.

 

Horrible to think you are back to square one, but at least you can write off Cymbalta as a med of choice to help you.

 

Regarding a med that would be better suited to curing your symptoms, I could ask Hat to weigh in..

 

I am a neuro-based researcher, whereas Hat is more of a "mad-chemist" (LOL) and has far more expertise in the available drugs than I do. I am a researcher whose work is based on non-guarantee results, whereas Hat works on tried and tested results. 

 

We make a good team - I hope that make sense - but please PLEASE keep asking for help as and when you need it.

[jc619]

Hi IUN,

 

Each 30mg capsule I have has 170 micro-beads. So 85 beads for the 15mg capsules I made. And then it will be 42 beads for the 7.5mg tablets.

 

So each full 30mg capsule I have will make 4 x 7.5mg capsules of 42 beads each. I'll then have to crack open a new 30mg just make up the 5th 7.5mg capsule, which will  leave a spare 128 beads.

 

I also have quite a few capsules left over, so I am OK for spare beads. My question is how many beads should be in my backup/emergency capsules? You say a few, but how many is that? 

 

If my 7.5mg capsules have 42 beads, are we talking half of that, 21 beads? Or is it 10 beads? Or 5 beads?

 

Sorry about all these questions. I just find this part quite confusing.

[fishinghat]

The "return" of your neuropathy is common. This is called a rebound symptom. It is often worse than before you started the medication but will return to baseline after you have been off a few months. 

[jc619]

Thanks Fishinghat, it is at least good to know things will hopefully settle back to as before. 

 

Unusually, I wasn't actually in much pain before starting duloxetine. It's a bit of a complicated story, but the neuropathy is still being investigated. The diagnosis doesn't really make sense to me - my diabetes is well controlled, I'm quite young and this is about 6 weeks old and totally out of the blue. But that's a different story I won't go into.

 

The doctor figured this might all be quite anxious for me and so gave me a drug that could deal with both anxiety and pain. I was a bit shellshocked so went along with him.

 

That's why when I experienced side effects (tinnitus & trouble urinating), I figured coming off for now was the best course of action, as I'm not sure I'm at the point of needing pain relief.

 

I haven't really been in much pain until the day I went cold turkey. It feels like I may be getting the 'burning feet' withdrawal symptom, and that's making the little bit of pain I've had worse.

 

One question. You say it will settle down in a few months. In your experience is that the amount of time is related to how long someone has been taking duloxetine? Normally for peripheral neuropathy the dose is 60mg and they say it takes about 4 weeks to feel a difference. But I was only on 30mg (the idea being it would be increased after a review), and I started to wean off after 3.5 weeks when it didn't suit me. So I'm not sure I was on it long enough or a high enough dose to make much of a difference to any pain. Would that make the rebound a bit shorter?

 

Also, what do you reckon is the correct  number of backup/emergency beads (in the post above)?

 

JC619.

[invalidusername]

So your math is perfect still, and the beads that are left over from making the beads will be sufficient in an "emergency". One you have stopped, you will undoubtedly be fine for a good 2-3 days, by which time, you only need to go back up to a maximum of the half the previous dose. Don't go back to the last stable dose after 3 days or more as it will only result in more complications. So for now, tr not to worry and just put your spare beads in a dish or jar somewhere and leave in nightstand or cupboard.

 

Deal with it as and when it comes to it. 

 

At worst, your symptoms of the feet, skin and urinating will return mildly, but should be gone fairly quickly. But you will need to give it a few days. You need to let your system stabalise. If you took more beads each time there was a flutter, you would never come off the damn stuff.

 

Usually, the rebound will correlate to the length of time you have been on the meds, but everyone is different, but as I said earlier, you should find that you go back to homeostasis fairly quickly. Just expect a little bit of discomfort as you come off and then you will need to approach the medication route again knowing that Cymbalta is not working for you.

 

It is not the only drug out there for this sort of thing. Cymbalta was never meant to be a combination drug of depression/anxiety AND pain. It happened by coincidence. That tells you how much we know about the neurological impact of these drugs on the brain.

 

Unfortunately, it is a game of roulette. I went through 4 different meds until I found the right one for me. 

 

The brain is a very complex organ, and the big pharmas will have you believe that they know a lot more than they actually know. As I said before, a lot of my research involves the brain, albeit in the field of neurolinguistics, but I can see just how little we know. 

 

It is a case of being patient to find the right drug. There was a case in France not so long ago where a very influential Doctor was given a new Mercedes by the pharma company if he would only prescribe a particular drug to all his patients.... you get the idea?! Not trying to scare you, but these things can take time and this is why people like at and myself do as much research as possible for ourselves and not rely on the Doctor's opinion.

 

IUN  

[fishinghat]

IUN is correct, your math is fine on the emergency beads.

 

He is also correct that there is other meds out there for neuropathic pain. 

 

When IUN said that everyone is different that is soooo true. If your pain just started 6 weeks ago then it should settle down in probably 4 to 8 weeks after the last dose. Don't panic. just remember that the best medicine for this is patience. Something I am not famous for.  lol

[invalidusername]

#Don't panic. just remember that the best medicine for this is patience. Something I am not famous for.  lol

 

LOL - Don't I know that is true!!!

 

To be honest, you would do well to continue your discussion with Hat relation to your neuropathic path. We have seen people prescribed Cymbalta for pain only to end up being depressed and/or anxious. You do not want to be one of thee statistics.

 

To put our roles in clear definition;

 

HAT - best knowledge of right meds for specific disorders and symptoms

 

IUN - best knowledge for understanding why things are happening the way they do as a result of specific med.

 

We make quite quite a good team and have done for a many number of years, so please take faith in what we can tell you... We only want to help you. Unlike an MD/GP, if we do not know something, we will research it, rather than guess as it!!

 

IUN