Hi all. I’ve been on amitriptyline for just over 2 years now. Increased a number of times to take me to 90mg per nocte. It was a godsend initially and although I feel the effect on pain has lessened over time it has helped me a lot with falling and staying sleep up to recently. I am in the midst of a moderate flare having had a stubborn kidney infection which took a lot of out of me. Since the onset of the infection - and the antibiotics - I’ve felt no relief at all at night and I’m back to restless nights full of pain, burning feet and sleep disruption.
I’ve also gained a lot of weight on amitriptyline, albeit very gradually… so if it’s no longer of any benefit I’d happily switch although to what I’m not sure as anti epileptics give me severe emotional side effects.
Does this drop off in effect sound familiar to anyone? Has anyone successfully switched to another tricyclic, SSRI or duloxetine (might not be correct spelling?) I have also heard low dose naltrexone can be good? I have hEDS as well as fibro.
TIA for any thoughts…
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Winter_night
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Hi Winter_night. My dr told me after he increased the dose for a second time that my body becomes accustomed to it. I asked what happens when I reached the maximum dose and he just shrugged!!!
Hi BottomleyPotts50 - I’ve always worried about reaching a ceiling with amitriptyline as my dose has continued to be increased periodically and like you my GP didn’t have a solution in mind for when we reached that point but I didn’t expect it to just stop working like it has. I guess the issue of reaching a ceiling has been taken out of my hands now I want to come off it….
I've been on Amitriptyline for over 10 years. I've never found it helped any pain I have and have developed gut and bladder pain, which it's supposed to treat, while I've been on it. It does, however, still give me a sleep window. If I don't fall asleep in that window I don't sleep at all. My sleep has got steadily worse all my life though, I figure it can only do so much, I still get up several times a night.I've had to come off it twice to have my children so I've had gaps so maybe that has helped. Although I'm on 90 mg, so that's high ish dose, but I've come down from 150mg. The higher dose didn't make any difference. There is it's younger cousin Nortriptyline apparently maybe you could try?
Hi Cat00 - I’m hesitant to take another tricyclic/anticholenergic long term because early onset Alzheimer’s is in my family so I’m probably higher risk for it and these drugs have been linked to a further increase in risk. I only came across a reference to amitriptyline as an anticholenergic recently but it’s yet another reason I want to come off it now it’s less effective. I think you have to take these drugs for years for the risk to increase but all the same, 2 years has gone by so quick…
Yes I had similar worries but my neurologist says because I sleep so badly its the lesser of two evils, what with poor sleep contributing to dementia aswell? Really if we can survive on no medication that's ideal, everything has a down side I think...
Cat00 that’s good to know, what your neuro said, and it makes sense that poor sleep would be as harmful long term. I totally agree, I would be much happier not putting so much medication in my body daily but I can’t function without it - the trade off is difficult to balance isn’t it…
I’ve been on amitryptaline for over a decade, went up to 160mg nocte but after a time found it ineffective. However, I reduced it down and now take 10mg with 5mg melatonin which is enough to give me a sleep window and not gain too much weight. I have, over the years, switched to/from amitryptaline and trimipramine - which might be an option for you.
I came off Amitriptyline and went on to Pregablin as it had stopped working. In turn, I moved on to Duloxetine, for the same reason. Only trouble with all three for me was the miserable side-effects, both starting and withdrawing from them.
I'm not sure about weight as I've been heavier than I want to be, ever since I got Fibro more than 12 years ago. Having limited mobility and energy can't help, so I'm not going to blame it on the meds.
Thank you Dee, I’m nervous about trying pregablin as gabapentin made me feel horribly depressed and I stopped taking it after 5 days as was sobbing the whole time. I keep seeing references to duloxetine so may give that a try if GP agrees - I guess I have nothing to lose as the pain is so debilitating at the moment, what’s another few weeks lost to getting used to it and seeing if it works…
The difference is that Duloxetine is an SSNRI, rather than an SSRI. This means the Seratonin's (S) relaxing/pain relieving effect is balance by the Norepiphrenine (N - old language = Noradrenalin). I felt emotionally more 'stable' on the Duloxetine and definitely less unsure on my feet.
I've been off all meds but Codeine 30mg for several years. Recently, I got into a bit of a negative spiral and stopped taking the supplements I'd found to replace the mood-boosting / pain-relieving hormones in Duloxetine. I have since been put back on Duloxetine by my new GP and am only waiting for a few days free of activity before starting them again - as I know I find the side-effects debilitating at first.
I wish us both a gentle re/introduction to Duloxetine and a safe return to wellness.
How are you getting on Dee? I still haven’t made any moves with my pains meds as my last GP appointment was taken up with urology and gastro stuff.. I’ve been diagnosed with a condition called MCAS very recently and as I’m on a new mast cell drug (which is working really well - thankfully!) I parked making any changes to my pain relief until now. But again I’m thinking about needing to get off or reduce amitriptyline as I’m ballooning weight wise and not getting any deep sleep, as well as pain in hands and feet ramping back up again. I wondered how you’re doing and if you’ve settled back onto the duloxetine? X
The quick answer is yes..in time you always need to up the dosage until it is no longer effective.Most then go onto norotriptolene which is deemed not as affective but while on this drug for several months will let you rest from anatriptolene and you can then go back onto it at a much lower dosage.(like a big circle)
Thanks Muddybear - I hadn’t thought of a temporary break/switch but that makes sense. I dread the tapering down - do you know if I can go straight onto an alternative or I need to fully wean off the amitriptyline first?
Hi I get you. I'm taking Amitriptyline as a pain killer for hip impingement. I started them last August I thought they worked wonders for me. I started on 10mg then upped to 20mg. I have IBS C so get a lot of cramp. These wonder meds helped with ibs no more constipation no cramps sleeping great. Then I noticed this year the effects seemed to of worn off. My pain came back the ibs symptoms all returned. Then I noticed I had gained weight. Not unusual I do tend to gain half stone now and again. So I went onto healthy eating but this weight would not drop off as it would usually. So I googled Amitriptyline and guess what some people gain weight and find it very difficult to lose it again. I'm now weaned of them and my excess weight is slowly dropping off. I hadn't been on them that long or a high dose. I got some awful side effects. So anyone on these meds please do wean off them slowly.
Thanks Gizmo6 - I haven’t started tapering yet as have a trip away coming up but having weighed myself yesterday I need to get going as soon as I get back! I’ve gained almost 2 stone in the last 6 months and im definitely not eating or moving any more/less than usual. Im only 5ft 2 and it’s making me miserable - it seems like it’s a pound a week, just creeping up and up. I know it’ll be a rough few weeks/months coming off it but I can’t keep going with it when I’m not getting any benefit whatsoever… do you mind me asking what you switched to (if you did switch)? x
My husband is on them for cervical spondylitis he gets shocking headaches. These have helped him but his dose has climbed and climbed. I'm dreading it if he has to come them when they stop helping. He's been on them close to 4 years. No I didn't switch I found exercise has been a big help. I only take paracetamol if needed and a topical gel. I'm so much better pain wise. I have finally lost a pound and half in almost a month been off amitriptyline for roughly 3 weeks now. I too am only 5 ft 2 so half a stone gain is a lot at my height. My hip pain is great until the evening when I'm been sat down a couple of hours. I was only taking them for pain. I hope you find something else to help you. These meds are great until your body gets use to them ,then it seems they stop working. A good chat with your gp is needed. Good luck but do let us know how you go on.
Gizmo6 Thank you, I certainly will. My GP is empathetic and supportive but she tends to defer to consultants for any 'off label' prescriptions but I reckon if I bring her some options it might help. Well done on losing the weight - it isn't easy!! I have been using CBD here and there too and it takes the edge off but I find I build a tolerance quickly and it's super expensive. Thanks again for the advice and the moral support!
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