As I wrote earlier David has had some nasty side effects to Oxycontin and under advice from pain consultant is changing meds.
It was decided to cut down Oxycontin from 70mg twice a day to 20mg twice a day, or even lower, and start on Butrams.
Confirmation letter to us from pain clinic and visit to GP yesterday was alarming as he has to come off Oxyconting before introducing new med with no pain relief to cover this period.
Gp wants to discuss it with me to see how I feel about helping David through what will be basically 'cold turkey'. Knowing how he suffers flair ups, A 'normal' life for him on any pain meds, I can't say this is something I want to put him through.
Yes - always withdraw from meds slowly. But..... in this case he will have no pain relief.So....do it quickly, get withdrawals over and on to Butrans or take longer and prolong his agony?
Unless of course anyone has a cunning plan\? GP hasn't. Comsultant hasn't. And I certainly haben't
Pat x
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This sounds beyond the realms of endurance - for both of you. What will you do with all the other medication in the house?? I'm wondering why he isn't being offered a medically managed detox - I guess they know you will do it.........
Am concerned Pat, this sounds just too too hard for you both.
Sorry, this doesn't sound very supportive as I read it back but it is meant with good intent.
Thanks Shirley I know you are the last person I would call negative. XXX
This really is his only pain med - well with Oxynorm top up but that hasn't been mentioned. ( Box full of other meds for other conditions about 14 in all.)
In the past he has always been able to go straight from one med to another. Oxycontin is one where you can't take anther at the same time. Soooo off one before starting new one.
As far as I know and hope someone will tell me there isn't anything to substitute for pain relief while withdrawing. GP shook his head and said no. So if he did it very slowly as we would recommend for say...Gabapentin he would be OK. Apart from the screaming pain along the way.
As i said GP wants to see me...Monday i think. Timing could be better!!! Oh pooh
x
Hi pat I know what u are both going through my gp wants me off oxycontin I was on 160mgs a day now I'm on 80mgs a day but my pain specialist has told me to stay on that. Pat I know u are a strong person and that u will get David through this.
Hi yes I started and it's he gp and why the GP wants me off that it's because it costs £100 for a box and they want to put me on the cheep one that dose not work for me
Listen to your pain specialist regarding even staying at 80. He is the specialist, not your GP. Does your specialist write the prescriptions for you? If so then you shouldn't have a problem. I'm not sure how it works where you are so just going by U.S. protocol. Maybe a new GP? Have to stand up and loudly voice your concerns if not being treated correctly.
I'm so terribly sorry, the comment re: financial aspect was in response to Yogibe answering my previous comment. I must be posting in wrong place in this situation! Please forgive the confusion. I am terribly concerned about your husband as the same has happened to me and am only trying to help from my experience. I am praying for a safe outcome.
No need for any apology. I have a screen reader and sometimes I miss where the post has come up. Everyone has been so supportive and I am digesting it all. Nothing is going to happen without firt speaking to pain consultant and then GP. He is the messenger.
I does sound horrendous to do it like that. And if he does could he not be admitted to hospital and have some degree of sedation and some of the low level pain meds. Intravenous paracetamol helped me when I was in hospital and just starting on the transition from Tramadol to morphine.
To suggest that you and David ' go it alone ' is not possible. You will end up having to call and ambulance I suspect.
Totally agree with you Dee - very worried. Sedation required to take edge off. Medical supervision for sure. I cut all meds down very fast before the trial and I felt really physically ill
Hi Pat , this does not sound good, how will you both cope?. Are there no external pain relieve options like patches, just temporarily during the swap over I thought paracetamol could be used with most drugs, not a good option but better than nothing. Maybe you might have to let David go into hospital while it happens, what about asking for respite care while it takes place on the grounds it is too much for you to cope with, even though we all know you will cope. Just a few thoughts every best wish that a better option is found no one should have to suffer extreme pain during drug change xx
TThanks Katie will need to find out info before any decision. He really couldn't go without something. Complete body in muscle spasms makes me go cold knowing what it does to him. Would need bucketfuuls of meds to bring him down.
How awful Pat! Can you insist they do this transition as an in-patient? Perhaps due in part to what happened over Xmas? It could affect him really badly... God! I really feel for you both! Sending bigger hugs xxx
That would seem the sensible simple answer but....under the integration of health and care bil people are now being kept out of hospital even after surrgery. Taking tem as day patients so the care becomes responsibility of district nirses, GPs and yup...family. As there is a huge shortage of GPs and district nurses that leaves one person.
But cerainly little more info needed here for David
It sounds like it might be a big fight to get him admitted and I can imagine that you'd not feel like pursuing this but he did end up in hospital under emergency circumstances at Xmas which is the worst outcome for everyone espesh David. It sounds like you have a good case for reminding them of his Copd (have I got that right?) which may be affected by the med change and finally can you really cope with all this Pat? It's all very well saying family can do their part but a) you already tick that box +++ And b) some people have tons of family to share the load.... You must be worn out! Could you visit your GP alone and say you're under too much strain? Gosh, I'm bossy today ! But if we all accept the government belt tightening in the NHS without pushing back then it's only going to end in one place. No NHS services. David made the ultimate contribution and he has to go through this... Bet the queen would be admitted. more hugs.. Xx
Well said bossy breeches!! Can only say it to friends so that's OK!
I think I needed to hear this from others to confirm what I already know. Yes I cn an pick up the pieces when he has a flair up but to do it with no back up meads is madness
That's just plain cruel - to both of you. What about you going into hospital for surgery on your eyes???? I'm sorry but I have no answers. What everyone else said about insisting he does the transition in hospital, seems your only real option. He does absolutely have to come off that Oxy duo, but, this withdrawal "will be out of your depth" there's no shame in saying that. Please really push the fact of your own compromised health (the looming operation) Oh my god, I'll pray for you both and your dogs... xo Julie
Oh my that's a scary prospect, this is unnecessary, he needs something to assist I would phone the pain clinic and ask to speak to the consultant who has been dealing with David and ask to see him or chat on the phone .
This is a consultant who is taking advantage of a loving wife whom has managed David's care throughout his illness in all aspects and they are expecting you to cope .
They forget carers need to be cared for, you'll know what affects David has an effect on you.
It's extremely unacceptable to leave your husband with no form of analgesic this would cripple anyone who doesn't have chronic pain never mind a sufferer. Take the other meds out of the equation unless they can help in any way which I doubt , what about a small dose fentanyl patch which will give some relief or preferably reducing the dosage appropriately with minimal health risks to both of you .
I can see an unplanned hospital admission if this is allowed.
What about sevredol for pain while on a reducing dosage.
Pat I do hope you can feel all the love and concern that is going on here for you and for David and the absolute message is - this is too much, just something else that is being piled on your shoulders that should be managed elsewhere.
Hello Pat. I understand your worry as I have just had to do the exact same thing. However I was not prepared for the amount of OxyContin still in my system. This gave me a little relief so I was not completely cold turkey. However it also does take a few days for the Butrans to kick in and get to a level in your body. All in all though it was not as bad as I thought. I think if we are prepared, we can handle the pain a little better, its when it flares and we are not expecting it, that it gets us the most. I hope this goes well for David.
Hi Pat, following total knee replacements on both legs I have recently come off my painkillers. I was on a cocktail of drugs that included cocodamol, naproxen, slow release morphine and codeine. While I was in hospital following surgery I was prescribed the standard dose of 20mg morphine instead of my usual 50mg as a matter of course. When I queried the strength I was told I couldn't have my usual dose as it had not been prescribed by a hospital doctor and I was overdosing by topping up with codeine (which is an opiate like morphine). As you can imagine I was experiencing pain from the op plus having withdrawal symptoms from taking less than half my usual dose of morphine. I had to wait until there was a doctor on duty before my meds could be increased. It was not a pleasant experience.
After the usual recovery period from my op's I discussed a plan to come off pain killers with my GP and started by reducing the cocodamol and naproxen by half then stopped them altogether. This was a breeze so I then stopped the codeine. Again no problems. I then reduced the morphine by approximately 10% every couple of weeks without too many problems until I stopped taking the last 10mg. Omg....I swear I didn't sleep for a month as there was 'something crawling underneath my skin!' My doctor described it as restless leg syndrome but it was not just my legs that were affected but my whole body. For medically trained professionals to suggest your partner should go cold turkey with relatively no support is ridiculous and if at all possible you should refuse.
I wish you both good luck and send hugs for both of you
That sounds like an anormous pain when hospital staff wont give you what you need. Sadly David can not come off all his pain meds such is his many conditions. upper spine now riddled with arthritis and basically falling apart. I just glue him back together like Humpty when he falls.
Hi Paton, I'm sort of new here, but I have a similar experience, I was on 150 patch of fentanyl, with 1200mcg of fentora fentanyl for breakthrough pain, methadone, and dilaudid, can't even remember what I took of the last two daily, anyways pain clinic and I had a disagreement, so they kicked me out...no more drugs, so after a month or so I ran out....then the fun started, well not really, I went 3 weeks with no drugs, till I got a new pain doctor,
Anyways my family doctor gave me clonidine to help, he also kept me on the methadone, and said nicotine patches might also help...
Anyways I wish you and David the best and hopefully they don't do this to him
Rule one - pain clinic is your bestest friend ever ever ever!!! That aside some meds you can change straight from one to the other. David did his with Fentanyl. When the patch ran ts time he went over to the Oxys. Unfortnately it doesn't work the other way.
Glad you got sorted in the end. Not nice to go through
Oh gosh! Withdrawing from OxyContin was the worst I'd ever experienced. Did it over 3 days that were the worst days I'd had. Had to send my kids to gramma and grandpa's. But rand is a great drug and I highly recommend it. Don't know how to answer your question but I hope this helps in some way. I'll never take OxyContin again. Using the Butrans patch also keeps you on track.
Here is a great article to help you decide. And there ARE other mess he can take to help him such as Methadone for pain as well as assorted drugs to address the symptoms of withdrawal.
Hi Pat, I just wanted you to know about my very recent experience of a similar situation. I have been taking opiates for years as I have had many surgeries, which has now left me with adhesions inside almost the whole of my abdomen up as far as my gallbladder. I was on MST for years 240mg per day. As I had become so tolerant to it, the pain team decided a change was needed as it was no longer effective enough. I also suffer from a bowel condition, where I can go from going to the loo between 15-20 times per day, to not going for up to 14 days. The consultant I was under just wanted to do colonoscopies all the time, but he could never get round to the affected area of my bowel due to the adhesions. I had been changed over this period of time from the MST to Oxycontin and was on 80mg per day. I asked for a change in consultant, and the first thing he wanted to do was change the Oxycontin to Targinact which still contains Oxycontin but also contains Naxolone. He hoped that the Naxolone would omit the constipation side effect of the Oxycontin. I got the new prescription after visiting my GP and discussing it with him. I took 1 tablet on the Thursday night, 2 on the Friday and 1 on the Saturday morning. I was feeling "offside" all day on the Saturday, cramping in my legs, I had really bad diarrhoea (nothing new for me), muzzy head feeling, and a bit "fluey". I took the tablet around 7.30pm and went to bed as I felt so dreadful. Within 30 minutes, I was suffering severe spasms and attempted to bang on the bedroom floor to get my husbands attention. It was actually the noises I was making screaming in agony that made him come upstairs in the end as he said he had never heard anything like it in his life before. My son who was in his bedroom, which is actually above mine in the loft, had his headphones on, and at first thought I had my tele on loud, but then realised that it wasn't the tele he could hear, but then couldn't make out whether i was laughing or crying. He opened his door a little, (as one of his mates were round on Xbox with him) and then he came flying down the stairs. My husband was just standing there in shock at the sight of my body contorting with spasms, and he said the noise that I was making didn't sound human at all. He said I was sort of growling "help me", in a demonic sounding voice. My son was just telling my husband to ring an ambulance straight away. Anyhow, the first response paramedic arrived and after they asked my husband about my medication and was informed of the recent change of medication, he gave me morphine IV as he said I had gone into full withdrawal. He was also administering gas and air as I was unable to suck on the mouth piece for it to work myself. I have very little memory of the whole event, but am aware that it was terrifying for my husband and son to witness my adverse reaction that occurred. I was taken to A & E once the ambulance arrived and was given 4 lots of morphine IV before I reached there and also given more on arrival.
All my blood results came back negative for infection etc and once I was ready to be discharged home, I was advised not to take any more Targinact and recommence the Oxycontin immediately. I also went to discuss it with my GP, who agreed for me not to take the Targinact again. I am now absolutely terrified of anything like that happening again. One of the other meds i take is Pregabalin, which I understand is also horrendous to come off. I hate taking so much medication that makes me feel so dopey a lot of the time, although I have lots of trouble sleeping and also suffer from sleep apnoea.
I really hope that they can give David some other medication to substitute the Oxycontin whilst he is doing his withdrawal, and would be grateful if you could let me/us know how he gets on. TIA xx Lorraine
What a terrifying experience for you all and so painful for you. I can well understand how scared you are now.
David has had similar episodes over the years whikst in flair up but nothing to compare with this. NHS 24 doc's used to carry othadine which unknotted him but not any more. DDangerous drug and might get mugged.
I have spoken with the pain clinic where consultant was in theatre but they will get back to me this week and discuss. I felt all along this is very strange not giving Dabid anything to cover the pains from coming off the Oxys. He struggles when he is taking pain relief so to have none and possible withdrawals scares me let alone him.
Will be thinking of you & David in my prayers tonight I feel you have been shamefully treated & hope doctor will review his decision real quick I know you are an amazing lady from your responses to other people don't accept this without a proper programme to ease him into other meds.
With something like this, I'd be tempted to call a drug and alcohol addiction centre and ask for their advice on withdrawal - they are the people who know exactly how withdrawal affects folk, and how to manage it properly.
I think your doctors are being rather unrealistic about expecting to come completely off one med before another is started, though I appreciate the risks of basically having two pain meds at the same time. I would have thought though that there was a way of slowly replacing the oxycontin with a shorter acting pain med that was a bit easier to come off.
I personally wouldn't do a cold turkey or sudden withdrawal of the oxycontin (even the drop from 70 mg twice a day to 20 mg twice a day is a huge drop)- withdrawal effects aren't just pain and psychological stuff - they can cause serious physical consequences too (eg affecting the heart, triggering fitting, etc) and it is the physical stuff that is the most worrying and potentially most dangerous. You could suggest to your doctor that you would only want a fast withdrawal if you knew he was being closely monitored in hospital (which probably won't be an option). Otherwise, you want a sensible bridging plan that doesn't leave him in a bad way. Definitely put your doctor on the spot by asking exactly what the potential consequences of a fast withdrawal are and whether it really is sensible to be doing this at home with no medical monitoring.
I have spoken with pain consultant and told him NO. Now wait to see what he comes back with. Tird up in theatre so couldn't say much. Knowa how I Pat xfeel and totally unacceptable for David.
David have Fibro ? Docs taking him from Oxicotin to a Butran's pain patch, am I reading this correct ? I am on a 5mg Butran's patch but I also take Cymbalta and Hydrocodone. Everything I have read about patch says going to a higher dosage will not necessarily give you more relief, in fact may be counter productive.
I guess, because of side effects of oxi there is no weaning off but surly they can do
Something better than cold turkey.
Does he go to pain clinic, they are suppose to know this stuff.
I would question this being a good way to change drugs and I really don' t think just Butran's is going to work.
Google Butran's and be informed when you go see doc.
I am so sorry, I am in a flare right now and cannot imagine going thru more pain just to change drugs.
Hi Paton, I was on 400 mg of morphine( 200 mg twice a day) and I decided to go cold turkey, I'm quite a strong guy , thirty years in gym, ex doorman etc and ive been through the mill a few times, I've been stabbed and gassed and ended up in hospital through this so I thought I could handle it for a few days, the first day or so wasn't too bad I didn't notice too much but the 3rd day was hell, not only did the pain in my elbows come charging back but the agitation was hell, I was thrashing about on the bed and eventually my partner called an ambulance , before the ambulance came I had to give in and take 100 mg of zomorph( morphine sulfate) the hospital didn't ro or recommend much and after about 5 hours sent me home.im also under the pain clinic and I don't find them particularly great, this pain- painkiller game I have found is pretty much your on your own. To the point now, oxycodon or contin is about twice the strength of morphine sulfate, if I was now going to withdraw cold turkey again( and I'm now down to 120 mg of my meds I would go by the Thomas recipe, I would try and eat well for a couple of weeks and build up my strength and also get some 10mg valiums, enough for 5 or 6 days, sedate yourself through the worst times and there will be a few, that's basically what I would do, butrans patches are fairly mild , I've used them myself, has he been offered fentanyl patches? They seem to be more of a match to the strength of meds he's on.
He was on Fentanyl pre the Oxys and consultant thought 13 yrs was long enough. He has gotten used to the Oxy way in the few months he has been on but side effects somewimes worse than the pain. Consultant thought he would try a new cocktail - lower Oxycontin and the Butrans. But if it is as low strength as you say there doesn't seem a lot of point.
He was on 100 Fentanyl patches. I did wonder if he could go back on them. They worked with cocdramol for breakthrough.
Can you answer a question.
Transition from Fent to Oxyc was as patch ran out straight on to tablets. Why doesn't this work with slow release Oxy? It stops working around 10 hrs so couldn't he stick a patch on then?
Anyway I have rung consultant yesterday who was in theatre and he will get back tody or tomorrow.
It is a responsibility to put on me and an unfair one too.
Hospital unlikely option due to bed spaces.
Thanks my friend.
x
I am so sorry to hear about the situation you and David are facing Pat.
I have just a been reading through this thread and I am really astonished that a Doctor would suggest no pain relief, just go through it.
Perhaps they may like to supply a bit of leather or wood to chew on like the old days.
If it were me I would be very tempted to say, no I cannot do that. That then leaves the ball in their court to come up with another option.
I do not know much about how all the different meds work but I do know about pain and how it effects me. The thought of just suffering for 3 days is unbearable and I cannot believe that the Doctor is fulfilling their duty of care.
If they are not listening, is their a patient's advocacy service that could become involved in order to add some support for you?
There are two of you facing this situation and you will both be badly affected in the same way.
I guess that if the worse came to the worse and you had to go ahead with the suggested option maybe take David to A&E as soon as he experienced difficulties?
I really do hope that you get the answers that you need and that you both do not have any more stress.
Thanks Dave. All changes to pain meds come from pain consultant only. GP just writes the script and I pick up the pieces.
As David has an allergic reaction to the Oxys consultant thought maybe time to try a med not used on David before.
You could say GP only following orders but intend to speak with him on Monday. In his words David has 2 choices...suffer side effects of Oxys or go cold turkey. I feel this is comsultants fault as not given any more guidance as to what may help David through this. So....need to speak with him too.
They have looked after David since we moved her 7 yrs ago and very well too. But somehow this time something has gone wrong.
Lots of excellent advice from griends on this forum has helped enormously and I shall be armed with that when I speal with them both.
Hi! I think I saw Tapentadol is available there? That is a GREAT pain medication. I take 1- 75mg tab every 6 hours and wear a Butrans patch 20 mg. the Butrans is a nice addition but will never cover all his pain. They can give him methadone as its a drug designed to help you get off strong drugs and does a fair job of treating pain. Ask about the Tapentadol with the Butrans or he will be in pain.
I wish you all the luck! Be strong and tell them what you need!
Hi Pat only just reading your post as I have been struggling the last few weeks, with a post Naproxen stomach ulcer.
I really feel for you and David what a horrible, frightening position to be put in. It is really scary now what is happening to what was a really excellent health service, I can't add anything to what has already been said only my thoughts are with you both and wish you all the very best.
Sounds nasty Cheryl hope you're gtting over it now?
We all want to be in charge of our own lives but not always possible when you have painful conditions. GP Monday but as he is only the grinder not the monkey qe shall have to see what he has from consultant.
Thanks for that Pat, I don't know how long it takes for an ulcer to heal to be honest, my daughter has also got a stomach ulcer after taking Naproxen for a badly sprained ankle, she has suffered two years up to now so don't know.
I do feel though it is minor in comparison to what some of the other people are going through, I don't know how I would cope with what David is facing its bad enough missing 1 dose of Tramadol.
As I said before good luck to you both hopefully it will be worth all you will have to go through.
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more hugs.. Xx
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