Tapentadol - Yikes, scary! Anyone else taking it?

I've been to the pain clinic for the first time today and the Dr I was was excellent. Asks lots of questions, was very understanding and gave me a lot of information. He believes my pain to be Neuropathic in origin and has prescribed me Tapentadol.

It is a controlled drug and I had to show ID and sign a special form, and i've been warned I can't take it outside of the UK without a licence from the Home Office. It IS severely habit forming and means I can't drink alcohol again. Ever.

That might seem like a small price to pay to be pain free, and I whilst I don't drink often, it's the only 'vice' I have left and I DO enjoy a drink every now and again.

He was very confident this would be a big help for me, but i'm terrified. Has anyone else or is anyone else currently taking this and if so, what are your experiences of it?

Thanks.

11 Replies

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  • Hi there ShellyWelly,

    Thank you for positing this as it's not a drug I have heard of but I've just done a bit of furkeling around and it sounds like it may be linked to Tramadol which has recently been made a CD (prior to this doctors had been heading them out like smarties) which is good and has as you say have to be signed for as are any other opiate based drugs.

    I'm so pleased you have got Dr I who sounds like he's got his head screwed on the right way and that will be of great help to you I'm sure.

    You say about not being able to have alcohol, well that applies to any opiate based drug, and yes, again any of these drugs can be habit forming. I will however tell you what my doctor told me when I was taking very high doses of MST and was worried about them being habit forming, he asked me what I wanted, and I said "to be out of pain" then why do you want to reduce it he asked, and I couldn't really answer other than to say "I don't want to be a druggie" His response was, " you come to me wanting pain relief, as your doctor I am duty bound to help you with that, so if you want to stop it that is up to you, if you do so all in one go you may well have a seizure and die, alternatively you can carry on taking my advice which is to continue taking the tablets, which we can reduce gradually to a lower level and find a balance where your pain is managed and you don't feel bad about it - the choice is yours ". So he gave it to me straight and I agreed I was being a bit silly, yes, I probably am addicted to pain killers and probably always will be but I have Fibromyalgia which means I WILL have pain, maybe I can't drink, I was never a great drinker, but I can assure you that three years on, I am very very glad I took his advice and stuck with him.

    You can read up on all the scary side effects and worry, but at the end of the day your doctor is duty bound to do his best for you and if he thinks may help then I would say go with it, if you aren't helped by it I'm sure he can turn to other drugs, but to my mind I really think he is doing the best thing for you at the moment :-)

    Sending lots of positive healing vibes your way, and if you want to PM me for any other info do feel free to do so :-) :-)

    Foggy x

  • Hey Foggy. Thanks for your message.

    I really did want to avoid opioids if at all possible, but I suppose I must also come to terms with the fact that there is no cure and pain will be a part of my life. There is nothing I can do about that, but manage it and take medical advise on the best way to do it.

    I am scared of starting any new drug as I always get side effects no matter what I seem to take. It's a big deal to give something like alcohol up. I don't drink much or often, but when I do, I enjoy it as a social thing. I adore cocktails and like the relaxed, confident feel I get from a couple of drinks. It's just another thing to come to terms with on top of everything else, but it's starting to feel like I have nothing left. All of the things I have formerly done and enjoyed, all of my old hobbies, my social life, everything, gone.

    Feeling a bit sad and finding it hard to cope with the fact that I now have no choice but to turn into a different person and wave goodbye to the old me that I knew and loved.

    Thanks xx

  • So sorry to hear that you must be in so much pain that you need to take this drug. I do think it is worth a try as the reason you are not the "old" person and are now different is because you have this terrible illness and are in so much pain. If this drug works for you and brings the pain down to a tolerable level you might never become the old person but you may become a new person who can do a lot more things because the pain is under control. I also had a look at the information about the drug for you and it seemed to state that you only had to have some kind of letter from your doctor outlining why you are taking the drug if you are going on a short holiday. It appears to be only if you were going abroad for 3 months or over when you would need a license from the Home Office. Everything with this illness is a balancing act and of course only you can decide whether you can tolerate any side effects the drug might give you but sometimes these side effects aren;t as bad as outlined in the leaflets as they always have to give the "worse case" scenario. I have started on Butrans patches in the last couple of months and apart from the first couple of days I don;t seem to be having an adverse reaction but like you when I read the possible side effects i really hesitated about taking it as I have had terrible side effects with some other drugs. it was only because the Pain Clinic nurse had recommended I try it that I did.

    I wish you good luck with whatever you decide. Let us know how you get on. Soft hugs.x

  • Thanks for being so kind and understanding rosewine.

    I need to accept this now and move forwards. I also need to accept that my life is now different and will never been the same again. I can't pretend I don't feel vast amounts of sorrow, just typing that.

    I am capable of changing, growing and reinventing myself. I've done it before, but I'm scared I won't be able to like the new me. It took me such a long time to grow to love the old me, and i'm scared that i'll never have the same love or respect for the new, crap version of me.

    Thanks again for your understanding xx

  • Hi rosewine, I had taken with me when I went to Kos on the 4th a letter from my GP outlining exactly how many of each tablet I was taking and how many in total for the number of days I would be away. I even decanted the Oramorph into a 100ml bottle given to me by the dispensary to be in line with what liquids you are aloud to take through with you, the remainder was in my suitcase and actually I only used about 5 -10mls in the whole time there because my back didn't spasm and my pain levels decreased amazingly. Anyway, there I was with everything in plastic bags with all meds on show, with a repeat prescription too just for good measure, and did they want to look at it, no, not one little peek, I even said, there are controlled drugs there and still I went through without any problem except when it came to the scanner and I was wearing my back brace which I thought had either plastic or synthetic boning in it and * ping* off went the bell! I immediately took the belt off and let them examine it and me thoroughly, which they did and I was glad they did because it showed me they were taking security seriously and then off we went to priority boarding. At no point either going out or coming back were any problems about my drugs, with MST, Tramadol and Oramorph plus diazepam I thought at some point someone would need to check, but no.

    Wisely though, anyone taking any opiates or benzodiazepines should get a letter from your doctor to cover you just in case. far better to take the trouble and get it done than to get to the airport and have the whole lot conviscated, which they are perfectly entitled to do.

    Happy travelling everyone :-)

    Foggy x

  • I think every one has given great advice, I had quite a long course of CBT because the hard part is accepting you are ill, sometimes help is needed with this. Lou xxx

  • Thanks lou60. I feel a bit like a petulant child throwing a strop. I don't WANT to be ill....though of course I understand that no one that is ill wants to be that way and that I must learn to adjust my understanding of self and accept my limitations and craft myself a new life. I'm not one for looking backwards or having regrets, but damn, am I sorry I let my sister badger me into going over a jump on my snowboard. The nerve damage happened as a direct result of that accident and i'm cross with myself, thinking what if i'd NOT done that and hadn't injured myself? Silly I know and I need to get out of that thought spiral and move forwards now.

    You are all being so very helpful, thank you xxx

  • Hi ShellyWelly

    I sincerely hope that you are feeling well today? I must admit that I had not heard of this medication, but I have looked on the NICE website, and pasted you a link to the information that they have on this, in case you wise to read a bit more about it.

    Link To NICE pages on Tapentadol

    evidence.nhs.uk/formulary/b...

    It really does sound like a very, very strong pain killer! I want to wish you all the best of luck with this and I genuinely hope that it helps with your pain.

    All my hopes and dreams for you

    Ken x

  • Thanks so much for the information Ken.

    It's a pretty new drug (think it only started getting widely used in 2012) and i'm on the slow release version at the lowest dose.

    I took my first dose last night and tried to keep busy and distracted so I wouldn't worry about all the scary warnings about stopping breathing and extreme allergic reactions! I felt a little bit manic/restless after about an hour, got suddenly very dry tired eyes and had trouble getting to sleep. I really hope the sleep thing improves as that is vital for me to manage my pain. I'd rather have high pain levels and have had a decent amount of sleep than lower pain and little sleep...

    Fingers crossed though i'm still not convinced there isn't an underlying arthritis that is causing many of my problems, but with negative bloods they are reluctant to diagnose anything more than reactive arthritis at the moment. I see a new rheumy for a second opinion in 2 weeks.

    Thank you Ken, hope you have a nice weekend :) x

  • I will keep my fingers crossed for you! x

  • I'm on Tapentadol and feel like I should have security guards with me when I collect it from the chemist. I went onto it as Tramadol had stopped working and despite other meds I was in a lot of pain!

    I was on short term release but have just been changed to long term as that is recommended above the other apparently! The only side effect I've had is extra tiredness. But I'm just so relieved that pain under control and the tiredness does reduce I think when you've been taking it for a while.

    Hope this helps a bit!!

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