Hi all 👋, sorry to be a long bore but I think the full details of meds is needed to understand my situation, so grab a cuppa 😂and thanks to those who make it to the end.
Wondering if any of you have any hints or tips about discontinuing duloxetine / amatryptaline ?
Long story short .... RA for 20yrs Osteo and depression too. On biologic benepali, arcoxia, Cocodomol, pregablin, now buTrans patch, metaclopromode, and stemetil.
Nearly Two years ago my gp prescribed pregablin, then a year later amatryptaline and duloxetine. I’ve been careful with doses only taking what is needed to dull the pain. Unfortunately since Nov. the pain has been worse than normal, med doses remained the same and my GP refused to give me anything stronger citing the “opioid crisis”. Enter severe diarrhoea ( or should I say quick exit 🤣), which has not stopped yet !
Dec I got an injection into the hip joint of lubricant and pain killer, which has taken the pain down from 10 to 8 which is HUGE in my books as I live in pain and very very rarely know what being pain free means. The diarrhoea however, didn’t stop, I tried everything I knew & what I could find on the internet, I cut out meat, dairy, wheat and so on and still the flood gates opened, causing many embarrassing situations requiring a change of underwear.
I decided )since I got no help from the doctor other than oral hydration) to reduce the dosages of duloxetine and amatryptaline to see if this would help, and although the diarrhoea remained it wasn’t as severe, huge relief, 😊, but having to contend now with bleeding I decided I needed more than just oral hydration, so I booked in to see another gp in my practice who I have knowledge of while being a companion to my daughter and hubs on visits.
What can I say? Other than Thank God?
I told her about the months of severe diarrhoea, that I’d reduced my meds, about the bleeding, pain and lack of sleep. First words out of her mouth ( as God is my witness) omeprazole can keep diarrhoea going....😮. Simple. She then examined my bum and found fissures were causing the bleeding( again indicative of long term diarrhoea and being run down), and she looked through my meds asking me if I’d consider opiates?
I told her again that the other gp issued them once, I became nauseous and best friends with a bowl. She then there are anti sickness tablets and did I want to try them again?
Turn on the water works....... yes !! I will try anything to get the pain to dull down. This is now day 5 and all is well with the anti sickness tablets and BuTrans patch.
So, now to the part I’m looking for help with. The discontinuing effects of duloxetine seem to be playing havoc with me, and I wondered if anyone else has any experience, hints or tips in dealing with the tearfulness, sweats, panic, horrible dreams, and overwhelming emotions? I tried to explain to hubs it’s as if I don’t fit into my skin anymore and I’ve been woken up into this emotional world I don’t understand . The edge has been taken off the pain and I am eternally grateful for that, which is why I don’t want to appear ungrateful.
I’m back to see this very lovely gp next Thursday to report on the effectiveness of the buTrans, and situation on diarrhoea ( slightly better and I seem better able to cope with this just now and I’m assuming it’s because the pain is slightly less than it was?) but this weird emotional wreck I have become is tiring out me and hubs. I don’t want to sleep because the dreams make me wake in pure panic! I’m crying, irritable, freaking out at the stupidest little thing and just a mess right now.
Thank you very much to those who manage to read and hopefully make sense of this garbled post, and huge thanks to anyone with any advise. Sending all those going through a crappy time lots of love and support xx
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Vanwife
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Hi Vanwife I think you did very well at explaining yourself , sorry I can't offer any advice only sending warm wishes to you and hope you can get some much needed relief from your present situation .x
Hiya Vanwife. I have seropositive RD & OA, diagnosed 12 years. Apart from Benepali & duloxetine (& prochlorperazine (Stemetil), which I’ll explain later) I take the same meds as you plus one or two more. A few things occur to me that you could take up with your GP next Thursday. You may be tapering duloxetine & amitriptyline too quickly, you are symptomatic of doing so. It may also help if you continued to taper one or the other, not both together, that way it’s not such a hit on your body (or rather loss of the meds that the system has become used to) plus you may be able to determine if the original reason for tapering them returns. One may still be helpful, or not, only determined by tapering one at a time. Either way, ask if your GP can give you a safer tapering plan. Also, you do realise that you're being prescribed two antiemetics? I used to take prochlorperazine but it was changed recently to metoclopramide, both are antiemetics so are you being prescribed or taking both?
See what your GP thinks, but at least with good help from your GP you’ve started sorting your troubles. I hope you continue going in the right direction. 😊
Thank you 😊 for your reply. And you are correct I am still weaning off amatryptaline at the moment, down to 10mg every other night. We did discuss the duloxetine and amatryp weaning, coming to this conclusion you so rightly state.
And yes again to your comment about the antisickness tablets. I am prescribed both as the nausea with buTrans patch is unbearable, the metaclopromide is the constant one I’m taking 3 times a day and the stemetil is the top up ( to be fair I’ve only needed one of the stemetil every other day with the nausea)
Everything mentioned above is something I will be speaking to her about on Thursday, as you know, it’s better to introduce one change at a time than many, so the plan is to discuss depression tablets once we see how my body reacts to the changes.
The internet can be a great research tool or cause panic. When I was first prescribed duloxetine I did as much research on it as possible, and the one constant is the horrible side effects which can last up to a year after you stop taking them 😣 ( even with gentle weaning off ) seems they are dependent on how long you’ve been taking them.
I’m sure it will get better, there is always the spiral down before the coming back up.
If you ever want to pick my brain ( what’s left of it 🤣) about the meds let me know. I’ve also been on tocilizumab injections in the past, which worked for 18months before constant bleeding 😣
I'm here with another thought, what dose of BuTrans did she start you on? I did have some woozy & wonky effects for a few weeks after first putting that patch on, thought I mightn't get used to it but I did. I noticed it especially when having a hot flush or getting hot for whatever reason, it's the med that releases a little quicker than it should. I started on 5mcg/hr & had monthly reviews with my GP increasing the dose as & when we thought it was needed. I don't notice it so much anymore but I rarely have hot flushes nowadays & guess built up some tolerance. I've been on 20mcg/hr for about 6 years, on Butec now though, same med different branding. Actually I asked a question before I started it, maybe the replies would be helpful for you too healthunlocked.com/nras/pos... If you find that the adhesive stays on your skin when you take it off I've found what works best at getting it off is Sticky Stuff remover, or rather my h has as he sticks them on for me, it's a bit difficult when it comes to putting them on my back! I replace them on Saturdays, just before my morning shower so then it washes off straight away.
Thanks for your kind offer, I’ll be sure to take you up on it when needed. 😙
Thank you again my lovely, yes woozy and wonky do describe some of the affects, and I am going to be observant about the hot flushes should’ve clicked might be the patch 😆 stupid me, and thank you very much for the link, heading over to read it as soon as I’ve replied to you.
Like yourself she started me on the 5mcg/ph and snap with the changing date 😆hubs does it for me too, I will take note about the residue as that is very useful information.
Thank you very much again, Sending much lovies your way x
Hiya, re amitriptyline: I tried to discontinue this about 4 years ago, anything lower than 10mg resulted in full blown migraines, nausea, vertigo which lasted every day for 5 weeks. Went back on amitriptyline and migraines went away immediately. Be careful with this drug, see if you can taper down. I tapered down over a couple of months but when I got to 10mg it was a living nightmare. The gp said the migraines were ‘withdrawal’ but a pharmacist that I knew told me that was not true and to go back to the doctor. After numerous gp visits they eventually accepted I needed to go back on it. Fast forward to now, I’m on 50mg for pain relief and only get migraines if I eat chocolate.
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