Excuse the spelling !! Hi my APS family . I have now been on this drug now since beginning of October . I am pleased to say a lot of my symptoms have improved dramatically, INR dropped a little but clinic sorting that out . I don’t know what is in the tablet but who cares , I still get a little weakness and nausea but compared to how I was I’m great 👍. Is anybody else on it ? 😁

27 Replies

  • Really glad its helping and youre feeling better xx

  • What drug are you on that helped drastically?

    As you are on Warfarin I also would like to know what therapeutic range the Specialist has put you on?

    Best wishes from Kestin in Stockholm

  • Amitriptyline Lure

    My NRI range is 3.5/4

  • Hi Amy,

    I take amitriptyline at night for my pain. I'm not sure if yours if different as mine isn't called Lure but I believe it is officially an antidepressant. It's also has many other medical uses however and is very effective in calming nerve endings down, which is why it is used for chronic pain. I take a much lower dose than would be prescribed for depression at night for my pain and it can also aid sleep. The only down side is that you can build up a tolerance to it and then the dose has to be raised but that is where nerve pain is concerned and may not be the case when used for other reasons.

    I am still trying to get an APS diagnosis however I officially have "chronic thromboembolic disease", which is basically just an umbrella term for having some kind of clotting condition.

  • Lure is the name of the person I was replying to x

  • Duh, right yes of course, Lure!

    Well I am on oxygen at the moment so think I should be allowed multiple brain farts! 🤣

  • Ah! You gave yourself a laugh for the day! Now I don’t have to! 😂

    ( I’m amazed you can even think or type at all, Claire!)

  • You did make me smile yesterday Kelly so thank you😄! Yes I did crack myself up earlier today too, well you know what they say... "don't ever lose your sense of humour!"

    I am struggling to think and type but I'm in soooooo much pain right now and I'm trying anything to distract myself from it 😱

  • That’s why I’m trying to tie in with you so much , sweet Claire. Or at least attempt a tiny smile from you.

    My doctors have told me after surgery that ,” pain begets pain.”

    Our bodies tense with pain, so it’s a bad cycle. If you can get on top of it early, you need less medicine. Less medicine means less side effects like nausea, spacey head, increase fall risk.

    Do you have the “ pain scale rating” thing in England? “ on a scale from 0-10, 0 being no pain, and 10 being the most excruciating pain imaginable, where are you currently?”

    Do nurses keep up with this?

    I’d like to with you. It’s a way to monitor how medicine for pain is working.

  • Your support and advice is so greatly appreciated Kelly, as are the smiles you have given me ☺️

    Most of the time at the moment it is a 9-10, I'm beside myself with pain. I do have short periods where it is a 7 and I'm used to coping with a certain level of pain 24/7 anyway and have learnt to distract myself from it with the Internet or TV, or by rocking or tapping myself. At home I use ibuprofen gel 10% a lot and rub it in wherever it hurts and this can really help me but I'm not allowed to use it at the moment while my body is healing. I also use hot and cold pads at home so I asked the nurses if I could have some ice and they have been putting some in plastic bags for me and this has helped, I move them around from place to place to numb the pain for a while. Unfortunately the bags are not watertight so I've had to change clothes a couple of times when they leaked everywhere 😯.

    We do have a pain scale here and the pain team is probably going to ask me my levels. It sounds like you're under the care of good doctors who understand your condition and explain things to you very clearly. My lovely heart /respiratory doctor is good at explaining things to me and it really helps because you then understand why you're experiencing a certain symptoms or pain and you also know that your doctor is on your side and absolutely knows why you're going thru what you're going thru, so to speak.

  • I was on this a very long time ago. At that time I was told it has a vasodilation side effect. Maybe that’s why you feel better? Why did they say they were giving you this?

  • They think I have damaged nerves due to the amount of TIA’ s I have had

  • Well great that it’s helping👍

  • Hiya. I’ve been on this for a good few years now. It was when I was seeing a neurologist for the possibility of me having MS. I was having a lot of pain at night with burning feet! I was getting up and sticking my feet in a bowl of very cold water 4 or 5 times a night. He told me it was an antidepressant but neurologists had found it helped with a lot of neurological problems too.

  • Try rubbing Aveeno Daily Moisturizing Lotion on your feet, when first going to bed, then when you feel the burning. It really helps and doesn't stain the bed sheets. Oddly enough I experience the burning on certain sheets so find it best to stick with cotton. Watch that because certain synthetic, even polyester might be a trigger.

  • Ha! I originally read this in my mind as “ toilet bowl” made me laugh,

  • I am not on it, and have never been, however it is great to hear that you are feeling good, well done. MaryF

  • Amitriptyline is an older tricyclic antidepressant. However, it is not usually used to treat depression (in much greater doses), but is used in lower doses (eg 25mgs, 50 mgs, 75mgs) as a muscle relaxant and to induce a restful sleep.

    It is very effective and an example of "side effects" of a drug being more useful than the original purpose of the drug!

    With good wishes,


  • Ros you explain things so well, I am learning so much from your responses, I wish doctors would explain things in the same easy to understand way😵

  • Yes, been on 50mg for a few years now and as long as I'm feeling good I don't want to change anything.

  • I was on this for a while.It was so I could sleep through the pain but it never.It only dulled the pain but still groggily woke then when supposed to get up I just kept going back to sleep and more agony.

  • You say you have had many TIAs and I wonder how long time it took to get you on Warfarin with an INR of 3.5 - 4.0?

    I also had a lot of TIAs and that is the INR I have today but earlier I had a too low INR and continued in the beginning to have neurological symptoms.

    For me it is very important to be in range and I selftest rather often as I have Lupus Anticoagulant and have a big difference between the vein-test and the CoaguChek XS-test.

    You say the TIAs has damaged your nerves (told by a Doctor) so I hope you test your INR often enough to see it is always in range. We have sticky blood (very sticky) so anticoagulation is the answer to both pain and neurological issues.

    LMW Heparin(Fragmin) is another drug you can take if the Warfarin does not work well enough.

    Kerstin in Stockholm

  • Hi

    I to have LA , self test every other day to keep in range . It was Prof Bruce who told me I had nerve damage and put me on this medication and thank god he did . I too suffered with bad neurological symptoms but now they seem to of been quashed dramatically x

  • Good that was what I had hoped to hear from you!

    First get your anticoagulation correct and then take care of the remaining pain from APS but also from other autoimmun illnesses as you know we may have.

    I have primary APS (no other autoimmun illnesses known so far) and have not bad pain enough to take drugs for it. Happy for that.

    Keep well!


  • I also take this drug, but not daily. It was suggested by my rheumatologist as an alternative to temazepam for sleep. I try to avoid taking it and therefore sometimes feel compelled to take it (25mg) at, say, 4am if I wake and know I'm not going to go back to sleep. Then, of course, I start out the day groggy.

    It's interested to hear about it for pain relief and general neurological problems. I may have to rethink the way I use it. Will discuss at Guys in January.

  • I also take it at nightto stop the pain and help me sleep and it works for me

  • i was originally prescribed it for a prolapsed disc. But soon noticed that my migraines reduced with it also.

    My back is much better but my rheumatologist and neurologist have said to keep taking it as it has such a positive impact on my headaches.

    I take 20mg daily and have had no adverse affects. Long may it continue :)

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