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juliescottie

Need to reduce my 360mg per day of OxyContin help

my consultant has told me that after 25yrs of using prescribed opioids they will not be working for me and are in fact making my pain worse, my comment "you put me on them" so he would like me to reduce them by about half, I don't seem to have any dependent signs but I bet they're there just waiting to pounce. The last time I tried I reduced by 10mg but could feel the difference in the pain so didn't pursue it but I have nowhere to go for my breakthrough pain, I take other drugs to but I have stopped the Ketamine, didn't do much anyway, any help would be much appreciated.

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  • juliescottie

    Hi Julie

    I was prescribed 800mgs per day of Oxycontin by my Dr but towards the end I was on closer to 1500mgs per day!

    I reduced by tapering but once I got to 320mgs per day I hit a brick wall & couldn't drop any further as i was suffering from all kinds of horrible withdrawals. I was put on 115 mils of methadone per day to help which it did. I've now not touched any Oxycontin at all since August 2016 & I'm reducing the methadone, now down to 35mils per day.

    I don't take anything for the pain though so I'm suffering now & my new GP is struggling to give me anything due to the Oxycontin I was on. I took the Oxy for around 8years.

    If you struggle your Dr needs to help you reduce it by offering some advice surely. It's not fair that they leave you to struggle all by yourself!!

    Sorry I can't help anymore

    Please let us know how you get on.

    Take care

    Ritchie xx

    • Guest

      Thank you so much for your reply, I had a long discussion with my GP today and unlike the consultant she was fantastic she wants do do it very slowly just drop 10mg in the morning keep the evening dose the same and after about 1 month drop 10mg in the evening and as she said there's no rush been taking it for a long time so what's a little while longer, thanks again for your reply.

    • me again, I wanted to ask how do you cope with the pain now? That's what frightens me the most, and apart from the massive dose was the OxyContin having any adverse affects on you?

      take care Julie 

    • juliescottie

      Hi

      That's great regarding the GP talk! And she is right, there is no rush & it's the best way to do it very slowly.

      Regarding dealing with the pain now. I just really struggle to be honest. Don't sleep much hence writing at this time, It is a real struggle.

      The Oxycontin was effecting me big time. It effected my mood, I had completely lost my sex drive & the amount I was taking I'm lucky I'm still here. I became very dependent on it & its all i thought about 24/7. It was horrible. I read all the horror stories also & you tube videos about how many thousands of people in the USA had died through overdose which is why I decided I wanted to come off it. I think Drs etc are much more aware of opiates now & how they work on your body than they were even just a couple of years ago & are becoming much stricter prescribing them.

      Good luck

      Ritchie xx

    • Guest

      Hello, ive now had 7 days where I've reduced 10mg on my am dose I can feel a slight increase in pain but nothing I can't handle and GP says that it will even out apart from that it's all good so next week I'll remove the same from the PM dose, I hope it's as smooth. 

      Julie

    • juliescottie

      Well done Julie.

      You're doing really well & remember, there is no rush. The slower the better, it's the only way to do it.

      I think I did mine too quickly looking back & I've even been told off about reducing my methadone too quickly!

      The for reduction I did was 50mils of methadone but that because i forgot to take it 2 days in a row & thought well, if I can forget to take it for 2 days by 50mils then I'll be fine.

      I've now dropped another 5mils starting today so I'll see how that goes.

      Keep it up Julie, you're doing great!!

      Ritchie xx

    • Guest

      Thank you for taking the time to reply to me, it means so much to have your support. This is typical me I want it to happen now, I've always been the same, but I will stick to the plan. Hey you are doing fantastically too as you've just said to me the slower the better so keep it up.

      once again thanks for the support Ritchie.

      Julie x

    • juliescottie

      It's my pleasure Julie.

      I know how hard it is when you're going through something like this. It was a massive thing for me & it helped me realise that after doing & going through everything I went through, I can now do anything.

      I was addicted to the stuff & it was the first thing I thought about when I opened my eyes & the last thing before I closed them at night! Horrible situation!!

      I remember getting really anxious when I'd run out & go into this stupid blind panic worrying about being late to get my monthly prescription, what if the Dr was Ill & the other dr wouldnt do my prescription due to the amount it was for, what if the pharmacy didnt have any in & i couldnt get any for hours, what if it snowed heavy overnight & the pharmacist couldnt get due to bad weather, what would i do!!! Talk about being paranoid! It really was the worst time of my life & its the hardest & best thing I've ever done! But I was addicted for years & on 1500mgs per day at the end so i was always going to struggle!

      I always said once I got off all that Oxycontin I would always support others as i found there was very little support out there & even though I didn't believe him at the time, the addiction Psychiatrist I went too to get put onto methadone to help me come off the last 320mgs per day, said out of the many he treats in Derbyshire with methadone, I was the only one being treated to come off Oxycontin, the rest were all heroin addicts! Can you actually believe that at first he refused to treat me saying, if you go get addicted to heroin then I will treat you, but i can't unless you are! It wasn't till I got a fantastic drug charity involved to help me that he gave in & agreed to treat me!

      The charities argument with him was that Oxycontin IS Heroin, only stronger as its manufactured.

      Sorry ive waffled on for ages, good luck you're doing great & keep in touch

      Ritchie xx

    • Guest

      Hi Ritchie, it was good to hear more of your story, I've a couple of questions just me being nosy tell me to mind it. Why did you start on the opioids in the first place and do you have other mess and has coming off made any difference to them.

      just so it's not all from you I'll tell you my story,  are you sitting comfortably?

      25 yrs ago I was 32 and had three small children aged 4, 5 & 6 whitest leaving work I missed the bottom 2" step and broke my ankle, I heard it snap owwww! Was taken to A&E put in a half cast three days later a full cast, it was ok I was hobbling around towards the end of the 6 wks, went to get the plaster removed and when the guy took it off he called for a dr, I've never seen anything like it it was mottled black, green and red it looked like a movie prop, any way a few hours and tests later they said I had 

      reflex 

      sympathetic dystrophy (RSD) next followed a year of physio and hydro every day except Sunday but it just got worse and more painful by the end of that yr I was on 5mg  mst. Next came some sympathetic nerve blocks but they didn't work so they decided to remove my sympathetic nerves from the spinal cord but in doing so the damaged the nerves to right hip and groin and I got an abscess on my cord causing mor damage and pain, I then ended up in a wheelchair although I still managed to use my elbow crutches indoors. The next 13mths was spent in hospital they let me home for some weekends my husband was and is an absolute saint.  They then told me of this new invention called a dorsal column stimulator I was to be the second person in the U.K. To be fitted with this and they said it would solve all my pain issues, can you guess what comes next? Yep it didn't work, so they'd now taken 2 discs to be able to get this thing in, when some healing time had passed they switched it on it was the strangest feeling but it did help with the pain for three days when it stopped working on the right leg and started on the left leg! So the did it again and again and again, each time ment 6wks flat on my back and the MST is going up after 13 attempts they sent me to see the top neurosurgeon in the U.K. At the Royal London. He said I can fix this no problem after 5 more try's I said that enough was enough and I wasn't playing any more, they weren't very happy but as you can imagine I couldn't take it any more, so they took all of the stuff out from inside me all except 2 small pieces of tattainum which have embed right in the spinal cord, that was the end of 98 and I have refused to play their game since so from that point there's nothing they can do for me other than pain management I'm under Chester and I also see 

      Andras Gobal at the Walton pain center, I take other meds, Tegrotol they like to use it for pain, Gabbapentin would be better but I'm allergic, propranolol For the headaches the OxyContin gives me and zopiclone to help me sleep. They also changed the name of the condition a few years ago to Cronic Complex Regional PIn Syndrome ( CCRPS) I've recently been offered som deep brain stimulation I'm sure you can imagine my reply, lol. 

      For me the first thing I think of in the morning is Pain and the last thing is Pain, to be honest it's always pain, I have learnt over the years how to help myself and that's distraction if you give both your hands and you brain something else to focus on it definitely makes a difference

      well I hoped I've not bored you to death and thank you for reading.

      incidentily I asked my consultant many, many times over the years if I would be addicted to the opioids and the consensus was that your body useses it in a different way for Pain I never really believed him but I do think that they should hold up there hands and offer as much supper as they can.

      if there's any thing else you want to know please ask.

      best wishes

      Julie xx

    • juliescottie

      Hi Julie & wow girl, you've had some crap!!!!

      And you thought yours was a long post!!!!! 😉😆

      I don't mind you asking at all!

      I tried co-codamol, my dad suffers with a back problem & he's on 800mg of that per day, he has for years & is still on it. My mum also suffers from back problems but she doesn't take anything for her pain now. So I guess it runs in the family!!

      I was also told that my spine curves the opposite way to what it should do!

      My partner got some free tickets last weekend to see Leicester tigers play. I love football but don't care for rugby but, because my partners son wanted to go I said we would take him.

      We braved the drive from Derby to Leicester in the snow & parked at Walkers stadium that was. LCFC Football ground, caught a shuttle bus, I didn't take my walking stick as i thought I'd end up on my back due to the snow!!

      Anyway, we came out after the game & the shuttle was a 25minute wait, my back was starting to ache due to being cold so I said we would walk the 15min walk back to the car.

      I honestly thought I'd never make it. By the time we got to the car, I could barely put one foot in front of the other & could've easily have cried due to the pain I was in!

      It's like the whole lower part of my back just cramps up from one hip to the other, tingling in both legs. My partner kept saying wait here & I'll go get the car but, I'm my own worst enemy as i often say no, it won't beat me. But im probably doing more harm than good!!

      It's Degenerative Disc Desease & I don't think I should be In the amount of pain that I'm in.

      My partner loves walking & I want to go with her but i can't as i know the outcome so we just don't go but i feel so guilty for that!!

      I've thought of asking for a 2nd opinion but, that will cost money I just don't have. The last MRI scan I had was 5yrs ago that showed, according to the consultant at Derby pain clinic that I "had a back like a 70yr old"

      It's due to where i used to work doing very manual labour from the age of 18. And since the last MRI scan if been in 2 bad car accidents through no fault of mine, one that I had to be cut free from.

      I tried even morphine after refusing it as the name frightened me, but it didn't help the pain.

      So my GP put me on Oxycodone to start with. Then after going up in dosage, switched me to Oxycontin which really did help at first, then it didn't, so she upped the dose & kept on upping the dose & the rest Is history. I later found out that Oxycontin was in fact Heroin & was 2.5 x the strength of morphine!

      I've tried Gabapentin, Pregablin, amatryptaliñ etc etc etc, plus loads of others I can't remember the names of but nothing else helped.

      Coming off the Oxycontin, yes my pain in my back is now so very much worse than it ever was but, I don't know if that's because it's "degenerative" & will get worse in time Anyway!

      The very last thing I want to do is worry you Julie but, I really was in a mess towards the end when I was on 1500mgs of the stuff per day. I can't even remember half the stuff my partner tells me I did back then!! I just wanted my life back to normal which Is why I, not my GP made the decision to come off it.

      It's taken me since August 2016 to the current day where I'm only now just starting to feel some kinda normal coming back into my life.

      It messed with my head big time!

      I lost my memory, I can remember things from years ago but i forget things I wad told today!! And I've just turned 50 this month!!

      My sex drive was lost for 4yrs & my partner thought I'd gone off her! It was due to, "Opiate induced hypergonad Hypergonadism" according to my Endochrinologist consultant due to all the Oxy I took over all those years as my testosterone level was near enough zero!!

      So now I have hormone Injections, it's brought the urge back but i need the help of those little blue pills if you know what I mean! At least my partner knows I love & still want her now! And I'm very happy to inform you that she is happy again if you know what I mean! ;-) hahahaha!!!

      But, it really did destroy my life, but please I'm not trying to say this will happen to you as everyone is different & I was taking enough of the stuff to kill a herd of elephants lol!!

      Today I suffer with pain all the time but i dont know if your body gets used to it, but i deal with it. It's because i have too & don't have a choice really.

      I can be walking along & it's like a knife in your back & I think my legs will just give way on me & I'll be on a heap on the floor. Or, I don't live more than a 2 minute walk from the shops, I can just manage the walk there but, walking back with one or two bags of shopping I have to keep stopping due to this cramp in my lower back, the amount of people that have stopped to ask if I'm ok has put my faith back to know there are decent humans left in this horrible cruel world we live in!!

      I've waffled enough so please take care Julie! If you need to ask me anything else at all you know where I am!!

      Ritchie xx

    • Guest

      Hey Ritchie, are we going to play who's is the longest?

       Thank your for all that info I find it extremely interesting getting someone's take on how they deal withe all this .... that we have to deal with, I know what you mean about the loss of sex drive, I found that the Amitriptyline did that to me in fact it made me like a zombie, memory loss etc I was taking 125 mg each night my girls used to say we told you last night but I had no clue, I've not taken that for about 6yrs now and every time it's suggested I shoot it down when I stopped it felt like someone had cleared the fog.

      Do you attend pain clinic? I'm sure that this is a bit like teaching my grandmother (if I had one) to suck eggs but these work for me when there's no more pain relief, DISTRACTION! If you have an Xbox or PlayStation etc find a game and when the pains really bad play, I know you don't want to cause of the pain but give it a go, also Lern some quick relaxation techniques and use them often (as holding yourself tight, and we do it without realizing makes more pain and makes you even more tired) the more you practice the easier they are to do when it's killing you.  If you're in company be honest and get them to ask you lots of questions which you have to force yourself to answer, even though you want to tell them to get lost. When it's during the night (why is it always 3am) I put an audio book in my ears and play a stupid addictively game e.g. Candy crush,  this last one is a bit strange, like me lol, I imagine my pain as a piece of paper and I screw this pain up tight I kick it and stamp it into to corner at the back of my head ( I know heads don't have corners)I won't allow that pain out, it's taken me a long time to be able to do this one and there are times when it wins but not often. I'm sure you probably do all this but it can't hurt to share eh.

      You say about the guilt because you can't go walking with your partner I know how that feels I feel devastated that my girls and my husband have had to put up with me and my problems but if we are being realistic our partners don't have to stay they stay because they love us and don't want a life that doesn't involve us, not easy to remember when feeling guilty or is that sorry for ourselves?just putting it out there lol. 

      My eldest daughter is 32 and about 5 yrs ago her and her husband were sat in the back of my car, me driving they were talking about their childhoods she said "we had the best childhood ever, mum was always there we had no childminders and even when she was not to good she always played games and read to us" so I guess it's all about perspective. So don't be to hard on yourself, look at all the things you can do and all that you give.

      i do some volunteering as a life coach for people with health problems, and everyone of them is carrying guilt but it's not doing them or their loved ones any favors, LET IT GO!

      You poor thing being in 2 car accidents it must have been terrifying to have to be cut out, thank goodness you survived.

      You say that you use a stick to help you walk, would you be deter with a trolley that has a seat, I know you don't want one old people have them but it would be more secure and when you have an attack you can sit and catch your breath, just think about it, I'd have one if it ment I could get out of my wheelchair but I can't walk so that's out, anyway who cares what others think it's you and yours that matter.

      well that's enough from me for now, my husband William has asked me to pass on his thanks for your support, I told you he is a saint.

      take care of yourself and of each other.

      hugs Julie xx

    • juliescottie

      Hi Julie.

      I'll let you win the longest post lol!!

      I do go to the pain clinic yes.

      I've had 3 lots of injections but none worked. When I went to them 2yrs ago they said to get off all that Oxycontin then come back & see them, they'd give me an open appointment. Which I did, then they refused to see me after I was Oxy free! So i rang the NHS & reported them for refusing to see me. They saw me again in December & I'm now waiting again for injections. If it doesn't work again they want me to go on a course on how to deal with pain. Which will probably be all about what you were saying!which i will do but im thinking of asking for a second opinion on my options. Not sure what to do really.

      It is funny why it's always 3.a.m why is that!? It's 3.a.m now & i normally look at my phone to see it's exactly 3.a.m!

      I was on my way back from work on the M1 for the first one when this bloke in a van swerved from the outside lane all the way over to try to make the exit & rear ended me.

      The last one I had to be cut out of, funnily enough the same week i had the last set of injections in my back! I heard a bang, the car sat down on rear end, puntured the back tyre & I clipped a car coming the other way & the wing mirror came through the window & hit me just above my eye & knocked me out. Luckily I could've been blinded a cm lower & having all the bits of tiny pieces of glass taken out of my eye brow wasn't nice. Thank God the other person was ok, it was a work colleague!!

      I'm waffling again, tell William I said it's a pleasure & thank you!

      Take care & catch you later

      Ritchie xx

    • Guest

      Hey, me again, what a nightmare with the accidents you were so lucky it could have been a very different story.

      Asking for a second opinion could be good, would you travel to Liverpool? I only ask because Walton pain center are leading the worlds research in pain they also have a pain management center it's residential but what's a little in time if it could make a difference, you could ask your GP for a referral, I asked my consultant about 8 yrs ago and he sent me as well as staying on his books not that they could do much for me I was already doing everything from the management side and there's nothing for the 

      CCRPS but I still go once a year there's new things all the time and I see my consultant every 3 maths it's just a tick the box exercise.

      Well that's it for now, see you at 3am lol.

      Take care

      Julie x

    • juliescottie

      Julie, so very very sorry for the following weirdly strange, very long, waffling on post so take this as a warning as i won't blame you if you don't read on any further! 😊 (and its the middle of the day & not even 3.a.m!!!)

      Hahahaha I like the "see you at 3.a.m" bit lol!!

      Sorry Julie, I've only just seen this as i always stay at my partners at weekends.

      She asked me to move in with her & her 2 teenage kids a few years ago which I did but, after a while things went pear shaped yet again! Not with our relationship, that was as great as ever but my ex had kicked my eldest daughter out & she had nowhere to go, she was only 15 at the time!!

      My partners mum had just buried her husband & found out she had breast cancer only 2weeks after so I had to find somewhere to live close to my daughter's school for my daughter & me as she was doing her exams & there was no room at my partners with her mum moving in for my daughter to move in with us, my partners 2 kids aswell so it was my decision so my daughter had somewhere to call home! Even though it was what my partner or i wanted as it was so hard for us both to not live together etc, it was for my daughter & we didnt really have any other options at the time!

      What a mum to kick her daughter out at that time & all down to, 1, because her new boyfriend was an idiot & didnt have or like kids (And I know you'll find this very hard as you're a "Normal" person) to believe! lol due to my daughter studying in her spare time instead of doing house work for her mum!! It's 100% true!!! My ex was a total house proud freak.

      When we were married, I worked shifts. On lates I'd get in at 2.a.m & get up at 7 so I could take my girls to school as i wouldn't see them all week if I didnt!

      I'd get home & there would be a long list of housework to do before I started work at 14.45. Clean, dust & Hoover top to bottom. EVERY..... SINGLE..... DAY!!!!

      Please, don't think I'm joking lol. There are people like that in this sick world we live in & my ex was & still is one of those bloody fruitcakes!! To top it all off after finding somewhere to rent for the 2 of us, after 3 months my daughter felt so guilty due to her mum begging her to go back daily, that she did!!!

      Because of all this & the house my partner lives in, it's a big old house so she spent £3k on splitting the front massive bedroom into 2 bedrooms so my girls will always have somewhere to go!! Just like your William, she is also an absolute Bloody Angel!!!!

      Anyway I digress!

      I would travel to Liverpool but i know my GP surgery would never fund it.

      When I first approached my new GP surgery (as the ones that put me on all that Oxycontin didn't wanna help me come off it!!) There was a Dr at a hospital in Liverpool that specialised in getting people prescribed opiates off them but i can't remember her name now! She was a specialist in this field after seeing a documentry all about it. When I asked my GP to refer me to her, as there was so little help around here, he applied but, said their budget would not fund it so I know that wouldn't happen as its only a small town in the Peak district where i live.

      But I would go anywhere, and as you know when you're in pain you'd do anything but, I'm afraid at the moment it isn't an option!!

      Weird question Julie but, at my spring chicken young age of 50 😆 not worked for nearly 2yrs due to all my health & especially back issues etc. All I've ever wanted to do is get back into work but, I know the issues I currently have I would really struggle. But having worked every single weekend since 14, then worked solidly for 34 years, my parents brought me up to work so I just hate what's happening to me being unable to do anything at the moment & would do anything to work again.

      I had a hobby of repairing designer watches from a real auction house at the jewellery quarter in Birmingham, polishing every scratch out & bringing them back to better than brand new condition before all this messed my head up! I have every polishing compound, polisher, ultrasonic cleaning tank, repair tools, everything! I could've made a great living out of it which is my aim once I'm able, people were calling me the very best watch seller on the internet etc, I've got my very own website & everything before all this just messed me up.

      But, I also told myself, due to the lack of support out there when i was trying to come off the Oxy that I would change career once I sorted myself out & commit the rest of my life in getting a job to help others in a similar situation to what I was in! But I just don't know where I would start! Do you know what i should do in order to get a career to help addicts etc?

      Sorry, but i did warn you it was weird, long & waffled on!!!!! 🤣🤣😉👍

      Take care

      Ritchie xx

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