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Amitriptyline

ash5896ash5896 Member Posts: 118 Pioneering
I’ve been on Amitriptyline 50mg for over 11 years for leg pain. The dosage has been reduced from 125mg. Today I received a call from the pharmacy that my Amitriptyline has been stopped. I called my GP and I was told NHS England guidelines now state that Amitriptyline can’t be prescribed alongside Fentanyl durogesic patches, OxyContin and Oxynorm. Last month the Amitriptyline was increased as my SCS isn’t working as well as it is supposed to. Last month my Amitriptyline was increased due to exacerbated leg pain. What can I do now? My GP has just given me a print out from NHS England saying that it shouldn’t be taken alongside opioids yet for the last 11 years no one said anything 
Ash 

Replies

  • woodbinewoodbine Member Posts: 2,308 Disability Gamechanger
    My OH has taken amitrptyline and morpheine patches for over 10 years and has not been told they will be stopped (yet)
  • ash5896ash5896 Member Posts: 118 Pioneering
    Apparently it’s a new thing I’ve been on gabapentin and pregablin and they didn’t work. I am really worried about it 
    Ash 
  • Adrian_ScopeAdrian_Scope Testing Team, Community Team Posts: 7,746 Scope community team
    Hi @ash5896. Has your GP recommended any alternative or something to replace the amitriptyline?
    Senior Community Partner
    Scope

    If you have a few minutes to spare, we'd appreciate your feedback on our online community.
  • ash5896ash5896 Member Posts: 118 Pioneering
    Hi @ash5896. Has your GP recommended any alternative or something to replace the amitriptyline?
    Not yet. I’ve got an appointment on Friday with my GP. Prior to being prescribed amitriptyline I’d already been on Gabapetin and pregablin but they didn’t help. The annoying thing is I’ve been on it since 2006 and now they’ve decided it’s not safe 
    Ash 
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @ash5896   Sorry to hear this, as long term using medications.

    The medical profession are concerned about any side effects or reactions to any medications.

    Some I have used have to be evaluated and with sometimes in conjunction with diet, foods we eat, or other medications.

    Research and testing can prove problematic. Finding medications can be harmful to health.

    For example Fruit juices grapefruit can hinder absorption  of the meds.

    Those of us who take medications know always read the leaflets that come with any medication.

    Beware over counter supplements have and can be a problem. 

    Of certain antidepressants any guide lines on combining meds should be aware.

    Another  is the over counter pain relief we all take can be harmful in large doses can make and also interact with other meds you are taking.

    Understand this something, I do know since taking meds and lots of them since I was a tiny tot literally a baby to know now.

    That some of the symptoms of tiredness and other issues are due to possible residues in the liver and organs.

    The medication you are on, is usually prescribed for a range of ailments, problems.

    More likely used as an antidepressant.  I was on this with my addiction and Thiamine and others.

    Doctor dismissed the one your on. As it was causing some interference.

    That was around twelve years ago because my recent Doctor asked me to consider to what I am on now after. Switching to Mirtazapine. must add on something else now.

    One point this something I need to add not a medical man or a Doctor.

    In our Community Health Units have wellbeing service do courses on Medications, learn a lot.

    College for those who have mental health. Recovery College do a similar one day course.

    Fascinating, stimulating, interesting because I know so many on the wrong medications for years.

    One other bit of interest might be worth doing your own research and guidance.

    My Doctors knows my health history so do consult me as have additional knowledge on my illness.

    Using diet nutrition therapies my spices herbs I know help.

    Chinese medicine we need to be looking at that, lots we do not understand.

    Another reason got interested using qualifications, knowledge to address my issues.

    Which helps the Doctor more you help yourself the needs and more responsive Doctor becomes.

    Best friends helps me a lot as they do for me.

    https://www.awaywithpain.co.uk.

    Organisation deals, advises and lots more on chronic pain or any pain.

    https://www.rls-uk.org.

    Restless legs syndrome might be helpful.

    Please if I can help with anything please ask.

    I am one of the team of community champions on the forum.

    Always consult your Doctor making any changes , I do.

    I hope have helped reassure you.

    Please take care.

    @thespiceman



     



    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
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  • woodbinewoodbine Member Posts: 2,308 Disability Gamechanger
    I take 20 different meds and some are contra indicated, however the advantages often out weigh the cons.
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    If it hasn't already been covered then there are 5 nerve pain killers. Amitryptylene, Nortryptylene, Gebapentin, Pregabalin and Duloxatine. All do roughly the same job but vary in effectiveness from person to person. Personally I do not get on with Amitryptylene at all nor with Gebapentin and Duloxatine but do take a low dosage of both Pregabalin and Nortryptylene. Up until 18 months ago I was on the maximum recomended dosage of Fentanyl patches as well (125 microgrammes / hour) but had issues forcing me to stop their usage. Now that I have found a solution for the nerve pain to get mobile again (at least a little) I will need the Fentanyl again to counter the rise in Chronic Pain that goes with the extra mobility. If there are further restrictions then it will make me go back to being housebound for no reason other than some idiot making decisions about something he / she has never needed to take and cannot cope without.

    I would suggest contacting your local MP and will hopefully get a better response than I have had from the idiot MP we have in this area.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • chiariedschiarieds Community champion Posts: 6,375 Disability Gamechanger
    Hi @ash5896 - Pleased to read you have an appointment with your GP, & I hope they are able to manage your pain with other options.
    Knowledge about medicine, as with our understanding of many sciences, is constantly evolving. It has been found that there have been rare incidences of serotonin syndrome when amitriptyline is taken with the meds you describe; in some cases this has been fatal. You can read about serotonin syndrome here:  https://www.nhs.uk/conditions/antidepressants/side-effects/
    I would urge everyone to be advised by their Drs where there may be side effects from taking different medications. I have read on other forums about people taking medications incorrectly, & saying they're fine, but no-one wants to be one of perhaps a few that has unwanted complications, or dies, because they don't heed warnings which are either already in place, or comparatively newly discovered as here.
    As @thespiceman describes, caution needs to be taken with some over the counter meds, & always heed if there's a grapefruit warning that should be on the label, or information leaflet with prescribed meds. With grapefruit/juice this is because it inhibits a complex of liver enzymes where many meds are also broken down, thus leading to potential side effects due to the build up of the med in your body.
    Please everyone, keep safe.

  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @chiarieds   Thank you my friend for mentioning the side effects and the post have you have written.

    I get the WHICH magazine big piece on supplements the contents the side effects interaction with drugs we all take.

    Many concerns and problems with many of us who take any meds .

    One I am on so many side effects, Sertraline .

    Asked Doctor as eat a lot of pulses beans, contain serotonin .  Amino Acids in the pulses OK.  With that.

    Herbal medicines St. Johns Wort and other Herbal Medicines.

    Check Leaflet, or website Medication, speak to GP.

    GP does and should do reviews of all medication, if not ask for it.

    Helps them Doctors to see how you are coping.

    Any issues, any problems.

    One final point know do get asked advice on herbal medicine, spices.

    Certain Spices take all the time small dosages.

    Turmeric, Cinnamon common uses digestion stomach problems.

    Can be harmful in large amounts.  Any herb or spice is.  

    Consultation of GP at all times.

    @thespiceman



     


    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • ash5896ash5896 Member Posts: 118 Pioneering
    chiarieds said:
    Hi @ash5896 - Pleased to read you have an appointment with your GP, & I hope they are able to manage your pain with other options.
    Knowledge about medicine, as with our understanding of many sciences, is constantly evolving. It has been found that there have been rare incidences of serotonin syndrome when amitriptyline is taken with the meds you describe; in some cases this has been fatal. You can read about serotonin syndrome here:  https://www.nhs.uk/conditions/antidepressants/side-effects/
    I would urge everyone to be advised by their Drs where there may be side effects from taking different medications. I have read on other forums about people taking medications incorrectly, & saying they're fine, but no-one wants to be one of perhaps a few that has unwanted complications, or dies, because they don't heed warnings which are either already in place, or comparatively newly discovered as here.
    As @thespiceman describes, caution needs to be taken with some over the counter meds, & always heed if there's a grapefruit warning that should be on the label, or information leaflet with prescribed meds. With grapefruit/juice this is because it inhibits a complex of liver enzymes where many meds are also broken down, thus leading to potential side effects due to the build up of the med in your body.
    Please everyone, keep safe.

    Thanks for your post I wasn’t aware of serotonin syndrome first I’ve heard about it. Will be seeing my GP in the morning hopefully getting this resolved.
    Ash 
  • ash5896ash5896 Member Posts: 118 Pioneering
    Saw my GP and due to a new ruling and recommendation by a Coroner Oxycodene and amitriptyline should t be prescribed together. 
    My GP had decreased my amitriptyline for a month and then a lower dose the following month to take it to nil. I will then be prescribed pregablin or gabapentin and see how it goes from there. Not looking forward to coming off amitriptyline but I think it’s better to safe than to put myself at risk. I found a copy of the coroners advice if anyone wants to read it and maybe worth passing it on to people who are taking amitriptyline and oxycodene together.

    https://www.judiciary.uk/wp-content/uploads/2019/11/Graham-Saffery-2019-0301_Redacted.pdf
    Ash 
  • Adrian_ScopeAdrian_Scope Testing Team, Community Team Posts: 7,746 Scope community team
    Hi @ash5896. Thank you for sharing this! I'm glad to read your doctor is supporting you and has put a plan in place to help manage your pain while taking into account these new recommendations.
    I hope the transition isn't too difficult. Please keep us updated. 
    Senior Community Partner
    Scope

    If you have a few minutes to spare, we'd appreciate your feedback on our online community.
  • ash5896ash5896 Member Posts: 118 Pioneering
    Thanks Adrian it’s going to be difficult as I’ve been on gabapentin and pregablin before I was prescribed amitriptyline. I think it may be a good idea if more people were made aware of this on here. Is there a way of doing that? 
    Ash 
  • chiariedschiarieds Community champion Posts: 6,375 Disability Gamechanger
    Pleased to see your GP immediately took safe action for you in reducing your amitriptyline gradually. Thank you for the link, which however makes very sad reading indeed.
    I must admit I had initially looked at a UK site that my pharmacist said she also used (in addition to Stockley's Drug interactions, which I can't access). I couldn't find any interactions listed in the former, so used a USA drug database, where the contraindications were listed. 
    I've looked at these sites before, as I found people on another forum were taking cannabidiol (CBD) at the same time as prescribed medications, thinking erroneously that there wouldn't be any problem, as it's sold in the UK as a food supplement. That's why I always say anyone wanting to try CBD should always speak to their pharmacist, or GP first.
    I do hope you get on better with pregabalin/ gabapentin in the near future.
  • ash5896ash5896 Member Posts: 118 Pioneering
    I’m glad too as I was worried that they were going to take me off it immediately. My GP is helpful and has always supported me and there’s no way I would change.
    people have mentioned taking CBD but I’ve never tried it. 
    Ash 
  • Stevo74Stevo74 Member Posts: 2 Listener
    Hi @ash5896, Adrian_Scope , I am on 25 tablets a day: 25 mg Oxycontin twice daily, 10mg Oxycodne a day, 250mg Pregablin twice daily, 30mg Amiitriptyline in the evening, Paracetamol 1000mg 4x daily, Diazepam 5mg 3x daily if needed, Natecal D3 600mg/400I.U twice daily, and 2x Senna pods plus macrogol.
    I live with chronic pain in my spine due to 5 different and rare diagnoses, but have not been advised by my Dr to stop taking those specific meds together? I don't have any problems with the above cocktail, and know they are working, only because I occasionally forget to take them in the morning and the pain is unbearable and excruciating. I am awaiting surgery for 2 1/2yrs(which may help or not) but because of the Osteoporosis they are unable to do it until my bones are stronger which will be at least another 1 1/2yrs maybe more.
    Anyway I suppose I just carry on with my regime until I am told otherwise???




  • poppy123456poppy123456 Community champion Posts: 22,214 Disability Gamechanger
    Stevo74 said:
    Hi @ash5896, Adrian_Scope , I am on 25 tablets a day: 25 mg Oxycontin twice daily, 10mg Oxycodne a day, 250mg Pregablin twice daily, 30mg Amiitriptyline in the evening, Paracetamol 1000mg 4x daily, Diazepam 5mg 3x daily if needed, Natecal D3 600mg/400I.U twice daily, and 2x Senna pods plus macrogol.
    I live with chronic pain in my spine due to 5 different and rare diagnoses, but have not been advised by my Dr to stop taking those specific meds together? I don't have any problems with the above cocktail, and know they are working, only because I occasionally forget to take them in the morning and the pain is unbearable and excruciating. I am awaiting surgery for 2 1/2yrs(which may help or not) but because of the Osteoporosis they are unable to do it until my bones are stronger which will be at least another 1 1/2yrs maybe more.
    Anyway I suppose I just carry on with my regime until I am told otherwise???





    HI,

    Never stop taking any medication that's prescribed to you unless you're told to stop by your GP.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • Adrian_ScopeAdrian_Scope Testing Team, Community Team Posts: 7,746 Scope community team
    Hi @Stevo74. It might be worth getting in touch with your GP to address any concerns you have about your medication, but definitely only make adjustments with the recommendation of your doctor.
    Senior Community Partner
    Scope

    If you have a few minutes to spare, we'd appreciate your feedback on our online community.
  • ash5896ash5896 Member Posts: 118 Pioneering
    I agree with Steve and poppy so always address concerns with GP. My GP said all GP’s and hospitals are aware of this and are contacting patients they believe need to be seen.
    I’m now being weaned off the amitriptyline over a period of 6 weeks and hopefully will be taking Gabapentin to see how that helps.
    please don’t stop taking any meds without speaking to your GP. My intention was only to let people know of what the changes have been made. With medication things change and for obvious reasons sometimes changes have to be made. 
    Ash 
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