Hi Everybody,

On top of the many other drugs I take, my Rheumatologist has now put me on Amitriptyline. I have seen quite a few people here mention this so can anyone tell me if they have found it helpful or experienced any side effects please.

Such a shame that we Scleroderma-ites seem to live so remotely from each other. It would be really helpful to be able to meet occasionally & chat over things together.

Everybody take care of yourselves xx

29 Replies

  • Amitriptyline is an antidepressant. But I have a very small dose to relieve my pains.

  • Thank you zenabb. Slightly worried now because I'm already on Prozac! My Rheumatologist knows this so I can only assume she knows what she's doing. Thank you so much for responding, it's so difficult talking to other people who only want to tell me how well I look.

  • Hi Toekansaal,

    I have been taking 10/20mg of Amitriptyline in the evening as a muscle relaxant for pain and also a sleep aid. Prof Denton, at The Royal Free Hospital in London, has just prescribed me 20mg a day of Prozac, as well as the Diltiazem I already take. I'm having restricted blood flow to one hand and don't want to risk getting anymore ulcers/infections that take weeks to heal! So I'm the other way round to you and after a week have no noticeable side effects from the Prozac or any interactions with other meds.

    How have you got on with Prozac - has it helped your symptoms at all? Thanks.

    Angela X

  • Hello Angela,

    Thank you very much for your response. Yes I've been a the Prozac for a few weeks now & I'm feeling more comfortable with the combination of Prozac & Amytryptiline and, aside from the obvious drowsiness, I've had no adverse effects.

    I turn I hope you are getting on ok. I used to see Prof Denton at the Royal Free but the journey became too much. I asked my local Rheumatologist to take on my care & she agreed. Lovely as she is, I now regret not going to the Royal Free, so I envy you.

    Take care

    Toekansaal x

  • I was prescribed this for neuralgic pain which was probably nothing to do with my systemic sclerosis. My GP explained to me that he was prescribing it for its painkilling properties but that it is an anti-depressant but I was going on such a low dose it would probably not act as such. Having not been able to sleep for 2 weeks due to the intense pain in my foot, it was absolute bliss as it took the pain away. I only took it for about a week and didn't even finish my prescription as the pain then eased away. No side effects.

  • Hi, I'm on amitripyline and fluoxetine (Prozac), they are used extensively together so don't worry. I take the amitripyline at night to aid sleep and relieve pain. It is a very old fashioned antidepressant that is rarely used for that purpose now. Both medications are advised as first line treatment for fibromyalgia, which I have secondary to scleroderma. Hugs 🤗

  • Hello Midgebite 21

    Can you let me know when you take the fluoxetine (Prozac) as I don't know whether to experiment with taking this (20mg) in the morning rather than at night.

    Thanks a lot

  • Hi, I take the fluoxetine in the morning and amitripyline about an hour before going to bed! Hope it helps you.

  • Thank you Midgebite21, that's very reassuring. It's good to know amitriptyline is helping you, for your sake xx

  • it is being increasingly used as an alternative to codene but at a much lower dose than as an antidepressant. I couldnt take it, within days l was starting to imagine l was in a field of fllowers singing nursery ryhmes.

  • Oh my stars! That sounds really scary for you! I find I'm woozy all the time, with or without the pills, but nothing as severe as your experience xx

  • I must be one of the unlucky ones...I took it once and was zonked out ...dizzy and disoriented and then a headache that beat any migraine I ever had. I gave it another go a few months ago and same thing again. So, not for me.

  • It really is different strokes for different folks when it comes to medication, isn't it? A horrible experience for you xx

  • Yes it would be nice to meet, I have never met anyone else with this strange disease

  • It used to be prescribed for depression years back but you would need to be on 150mg per day, it is thought to now treat pain/nerve damage if taken in lower dosage. I was put on this starting at 10mg and finally 30mg. I was taking it for lower back pain due to a prolapsed disc. I came off it after 8 months as it was doing nothing for my back pain. I've not heard anything about it helping with scleroderma. Hope it works for you Hun, you will probably need to take it for 3 months before it helps with anything, but I have read that it can help with pain as soon as a couple of days

  • Thank you mrsquerty11, that's very interesting. I've been started at 10mg so I'll see how it goes & now I know I mustn't judge too soon. Mine is for the pain in my feet that keeps me awake at night although I'm already taking 30/500 co-codamol. Take care xx

  • Hi, I'm on this in conjunction with Morphine for Sacroiliac Joint Dysfunction - not related to my Raynaud's. I was told that it helps the body deal with a side effect of morphine which makes your nerves over react to pain. I've been on it since 2006. It gives me a terribly dry mouth for about 12hrs (I take 20mg per night). When I first went on it, I got vivid night terrors. My GP was keen that I persevered with it. I found that I have much less problems with the night terrors if I (a) don't have morphine within 1hr of the amitryptyline and (b) take the amitryptyline and then go straight to bed. I still sometimes find it hard to shake off a bad dream (I wake up and then it starts again as soon as I close my eyes) - I get round this by getting a warm drink and distracting my brain with the TV or a book for about 15mins before going back to sleep). I make sure I've got some water close to hand throughout the night in case I wake up because I am so thirsty. Hope these tablets make things better for you.

  • Thank you frillyhilly, I too have the very dry mouth. Sometimes it's as if my tongue has been velcroed to the roof of my mouth. I'm afraid I know nothing about your Sacroiliac condition but we just have to find a way to cope with our own difficulties, don't we? Since being on this site it's made me realise how difficult it must be for doctors because we really are all different. Look after yourself xx

  • Hello Toekansaal

    I was given 30mg Amitriptylene for what I can only describe as a diagnosis of "peripheral neurology" not having the classic symptons of Sceleroderma with the hard skin etc. My feet were frozen flat, numb for all the day & night. It made a little difference but I found I was like a zombie in the day. My GP changed me over to Noritriptylene 30mg which I tolerate much better. I take all my drugs at night, but the last one added and to have the most effect is Fluoexetine (Prozac) 20mg which has taken the flat frozen feel away and my toes now feel like they stiff rather than numb.

    My feet are cold when I go to bed but about 1am or 2am I wake with burning hot feet, which I can hang out the bed. I can only put this down to the Prozac which I am wondering whether I would be better off taking it in the day as it feels more of a booster.

    My GP says these "depression" drugs interfere with the signals to and from the brain. I am also on Lyrica Pregabablin 75mg (I could not tolerate any more as this too makes me feel zombie-like in day) and as I have high blood pressure (but very low chollesteral, I am on Amlopodine 5mg and Candersartan 16mg for High B P. I wonder if now the Prozac has been added to the cocktail, maybe I do not need so much of the other "anti-depressents" as maybe it is these that make me so tired during the day.

    Taken at night all these don't give me 6 or 8 hours sleep and I do feel the need for a nap in the day, but it is much better than being awake every night. That's why I am thinking,maybe I would be better off taking the Prozac in the morning if it is meant to give you a 'lift'.

    I have had the fingernail capillorary test at Royal Free but my nail capillories were normal although my hands took longer to warm from cold than patients with diagnosed Raynauds & Scleroderma, so I sitting on the wall on this - especially as it is my feet that were frozen, not my hands, except in very cold weather but I can manage these. I do not know why they do not test your feet when this is the main issue.

    I hope this may help and perhaps you could change to Noritiptylene. I think GPs start you on the cheapest drug in the range first but sometimes this does not suit everyone. I had Ramipril prescribed for high blood pressure first of all and I lost my voice. My GP said it was the cheapest pill in its genre and thats when he changed me to Candesartan.

    All the best

  • Hi pinkdorf, when my doctor started me on Prozac he warned me to take it early in the day because if taken later it can cause vivid nightmares. I too have the burning feet, sometimes it's almost unbearable and this is why I've been started on Amiltriptyline. It's too soon yet to tell if it will make a difference. Thank you for your suggestions of other medications, I shall make a note & look into it. Take care xx

  • Yes, I have often wished we could "hang out" more together. It is such a rare disorder that numbers are low to begin with, plus there are not the kind of "hook up" services I have helped my patients use over my 30 years in oncology nursing! Many cancers are much more common and therefore much easier to find info and friends with. It has been eye-opening and frustrating for me to see how little is out there for "us"!

    Back to your question on amitriptyline. In addition to the larger doses for treating depression, it can be very helpful in smaller doses for a variety of symptoms, such as pain in nerve endings. It can make people a little sleepy after they take it, so I tell my patients to take it at bedtime. It can take 2-3 weeks to show an effect so I have my patients give it a month before we try increasing the dose or trying something else.

    Happy to connect anytime from here in Boise Idaho, USA

  • Great to hear from you pallinurse & first of all I must say what a wonderful job you do 🏆🏆🏆.

    Secondly, thank you for your knowledge about amitriptyline. I wasn't told by the doctor that it may take a while to kick in but now I'll wait & see what happens.

    I was first diagnosed 20 years ago & I've been lucky in that it's progressed very slowly until fairly recent times. Now I'm in shock at the speed things are deteriorating now. I find the 2 most important 'treatments' I have are my wonderful family & my sense of humour!!

    I'd be very happy to hear more of your news if you'd like to share. I live in Buckinghamshire UK.

    Meanwhile, look after yourself 🤗 xx

  • They are very effective as a painkiller, but they make me feel very lethargic the following day.

  • Thanks Alanjones, I'm finding that as well so it's very good to know I'm not alone in that.

  • Hi there, I was prescribed amitriptyline to help me sleep, I then also found out they were an old fashioned antidepressants . I have to say I feel a lot better taking them as get a good sleep and can cope better in the day. I've tried not taking them but soon wasn't sleeping which then led to me being down.

  • I live in Skegness in Lincolnshire and never meet anyone with our conditions. If there anybody near me .

  • Hi

    I take nortriptyline for nerve pain. They gave me amitriptyline first but I couldn't take the side effects. nortriptyline is the same sort of thing with less side effects. The reason the doctors don't give it straight off is its more expensive I'm told ! I've been on it for about 6 year.


  • Thank you for that Sami13,

    I'll keep a note of that name for future reference.

  • Hi I have been taking Amitriptyline for about just over 4 months combined with Naproxen for neck pain I started on 10mg at night but it didn't touch me and now I've been on 50mg for about a month now. Initially the pain began to decrease and it wasn't taking all my headspace I could actually enjoy my days. However I'm now slipping back to pain days and I've had an achey right leg for 2 wks. The ache is in my lower leg then it moves further up, keeps me awake at night. I keep worrying if I've developed DVT or is it a side effect of the medication?? Need to see my doc asap. Has anyone experienced a hey legs, arms etc whilst on Amitriptyline?

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