Oxycontin

[Bananas5]

David was put on Oxycontin 70mgs about 9 months ago with a 'spare' 10 extra if he needed. Oxynorm for breakthrough.

Initially he felt awful and didn't think they were right for him. Turned out it was withdrawal from stopping Fentanyl. Consultant had said no withdrawal likely but...

Monday this week I put in a script for the 40 mg tabs which always have to be ordered. Someone in Pharmacy forgot and suddenly their was a language barrier.

Meantime he took 30mg x 2 and what a difference in 3 short days.

His tiredness and listlessness had lifted. Still pots of pain but he felt well.

Going to try on this dose for a while and see if he lasts. Maybe drop another 10mg.

Maybe this climate is starting to do what we moved here for.

Pat x

[Titanaboa]

Hi pat

You probably don't know me well but you replied to a post of mine that I have accidentally deleted like an idiot lol

I'm so glad to hear of David's improvement

Always the way when someone makes a mistake isn't it ? They suddenly don't understand

But blessings in disguise and all that...

I hope you both see improvements in the Heath department in your new sunny home.

All the best

Ann-Marie x

[Bananas5 in reply to Titanaboa]

I am fascinated how you get your name!!

Think time has ccome for review of meds. That will be a challenge in foreign language!

x

[Titanaboa in reply to Bananas5]

I got my username from my pet Boa constrictors name

His full name is titanaboaconstrictor and he was the first thing I saw when I joined as he lives in his vivarium in my bedroom for something to make me smile when I wake up.

Not for everyone I understand but it works for me because he always seems so happy to see me even when I'm miserable and cranky in pain (smiley face)

And my human name was the midwife's. my mother didn't get a scan and hoped I was a boy!! Bit of a disappointment I guess. Smiley face . She didn't have a name ready so asked the midwife for hers and I got that. Better than Patrick I guess . Smiley face

Oh goodness I can imagine what it will be like with a language barrier. A lot of ¿qué? I can expect. Something tells me you'll be on the hunt for a translator lol.

All I can say is good luck with that and I hope the challenges you've faced with the rubber stamp people and the pharmaceutical side of things pay off

P.s I wrote smiley face in words as I don't know if Jane the computer can read emoticons

Ann-Marie xx

[Bananas5 in reply to Titanaboa]

Oh what a lovely story! Yes thank you - jane only reads written text so great help. Any pet whether a snake or goldfish is excellent therapy. No matter how you are feeling they still need to be looked after, fed and cleaned. We have 2 young Border Collies- 12 and 17 months. Fortunately they play together. No toys around? They make up theor on games with a twig or anything they can find!

Many surgeries here insist on you taking an interprter. Ours has 2 English speaking Doctors. Most meds and parts of the body have same name or use Latin. Or point! Until we get our final rubber stamp for permanent residencia we have to physically go to the surgery to book an appointment. As David is no longer driving that means a taxi. He went twice on Tuesday. But the sun still shines!

x

[Titanaboa in reply to Bananas5]

Hi pat

Glad you have some English speaking doctors that is a real benefit. That would be one thing that would concern me amongst many about moving countries.

I totally agree with you. Being a carer for two people (one with epilepsy and another with mental health challenges) plus my pets keep me going through my bad days . It's because they all need to be cared for that I'm able to put my own pain aside and look after them.I've found this to be a great distraction technique. It keeps me going knowing I can't give up because of those that rely on me.

I'll bet David and the puppies keep you busy too . Collies are great dogs and so playful.

Yeah I've used the old monkey point. This bit hurts! Smiley face

Ann-Marie x

[deejames]

I am no t surprised he was listless even given that his body has quite a tolerance. I was on about 50mg per day post op and I couldn't stay awake for more than an hour or two.

Dee

[Bananas5 in reply to deejames]

That explains the ;ast 9 months. And they don't really work too well either. Time to regroup.

Jane is very poorly and lost her voice so typung blind. Think she is beyond repair.

Not ignoring your emails

x

[earthwitch]

Interesting. I've often felt that sometimes rather than increasing pain meds, dropping a wee bit would be more beneficial, if only to give you more leeway to increase further. There definitely is a fairly fine balance between knocking pain, and being alert enough to enjoy life. Glad you have begun to find that balance, and are prepared to keep playing with it. I wish more doctors would allow their patients to experiment and tinker with doses (within boundary guidelines) more. I know I was much better off when I got liquid codeine and could manage the doses more accurately than trying to break tablets.

[grace111 in reply to earthwitch]

this is what i do and works well for me. i often change from oxycontin to dyhydroceidene. this works for me.

[1881ellie in reply to grace111]

Hi grace I'm going through posts as iam on dihydrocodeine and oxycodene was given fentanyl 50 patch but can't seem to drop dihydrocodeine without getting bad withdrawls. Got doctors Friday as another doctor has stopped the patch because I didn't just switch,can you tell anything as saw you take dihydrocodeine. Thanks Ellie x

[grace111 in reply to 1881ellie]

what strength are your dihydrocodiene? maybe get a pill cutter and take half the amount for a while until your body gets used to that. once your body gets used to half the amount. cut if futher until your not taking any and when you go back on them you will feel the difference. they come in many strenghts. 30mg 60mg 120mg so i dont know what your on. obviously if its a lot you cant just stop as your body will scream for them if your on a high amount. im on 60mg that last all day. i cut it with a pill cutter. then just take 1 oxycontin.i feel that the oxycontin are the worst for not lasting. so i take one with 30mg dhc.for me this is what works. im on slow release oxycontin i dont always take two. i miss it out at times. everyone pain level is different and maybe yours is worse than mine. i'v never been on fentanyl.the bad withdrawels are because your body has become addicted to the dhc. many people argue that its not addiction and say its tolerance. to me tolerance means that your body needs more of the same to get the same effect as when first started on the medicince and bodlily addiction is when terrible pain of withdrawls are experienced.thats got nothing to do with a peson trying to get a " high" .as is my experience. good luck.

[1881ellie in reply to grace111]

Hi grace sorry I didn't reply how did I not see this until just now.

I was on 20mg oxycontin slow release but theye were coming through ileostomy bad full pill so I wasn't getting them.so I've stopped.60mg oxycodene daily.240mg dhydrocodeine daily.8 paracetamol daily.other meds are for thyroid and bowel ect.I have built up tolerance. I was to change to fentanyl I didn't ask how to and they didn't say.the withdrawls are awful.I sweat.anxiety 10 times worse.and in pain. I started on oxycodene and contin after operationsome in 2008 and 2013 and I wish I had got off them.they just help with the fibromyalgia and I did get we lift in mood.it was short lived in wish I had never touched them I really do.forgot I'm on gabapentin.low dose.I thought patch the answer but to switch I've had difficulty. I see doctor Friday as last week he was on holiday and I saw another doctor who said who gave you a 50fentanly. He said I wasn't to take it but my pain so much worse I don't know what to do.i know I've became tolerant to what tablets iam on and if they increase what happens when I become tolerant again,and my legs ache and restless I can't get relief and tinitus in my ears,falling to bits.xxx

[RAYJAYC]

Hi Paton

I felt exactly the same when I swapped Fentanyl patches for Oxycodone prolonged release. For the first eight weeks I felt like I'd been hit over the head with a sledgehammer so was thinking that the Oxy' wasn't for me despite the slight reduction in pain compared to the Fentanyl. I was all set to ask to be swapped back again!

I was told that strength for strength, the drugs were the same so I wouldn't get any withdrawal from the patches..........yeah right, not!! My symptoms were all about withdrawal from the Fentanyl apparently; "we don't know why you'd get withdrawal" they said!

Anyway, as the ghastly feelings subsided and I began to feel human again, the pain started to increase unfortunately so the Consultant & I have agreed on a plan of;

three months Oxycodone, three months Fentanyl, three months Oxycodone and so on.

I always used to 'have a break' from Fentanyl every 16/18 months to stop tolerance building but now we're taking a drastic approach and swapping over every three months! It could be a disaster and confuse & fry my poor little brain or it could be just the tonic it needs!!

The idea obviously, is to stop any tolerance & reliance on them and although I think it's a good idea I also think it's a risky idea!!

Interesting that David feels better now he's the other side of withdrawal and on a lower dose (albeit a forced lower dose) of Oxy'; I shall be watching this space to see if he manages on it!!

I still think a holiday in the sun should be on prescription! Probably the best therapy there is!!

RJC x

[Bananas5 in reply to RAYJAYC]

Now this is an interesting experiment. Shall be listening to hear how you get on.

I still maintain Fentanyl patches were the best for David but at 100 he couldn't go any higher and have any functions.

Now he has bad RSL and keeps him awake most nights

Let me know how you do

x

[RAYJAYC in reply to Bananas5]

I will do; day one of the Fentanyl restart tomorrow (Thursday); I'm also very interested to see how it works although, I too am a fan of Fentanyl so may well use them for six months before I swapped back to Oxy. I've pretty much been given free rein to manage it but must be a good patient and trial the quarterly changes first!!

RJC

[1881ellie in reply to Bananas5]

I know this is old post.but iam on 60mg a day oxycodene and 240mg dihydrocodeine. Was also on 20mg oxycontin slow release but it's been stop as passing through ileostomy bag.the fentanyl patch they gave me was 37 I took it with pills and I was just in same pain.doctor raised it to 50 fentanyl and it was brilliant. But I was to stop pills I did and had withdraws it was terrible.so I have been taken off patch and put back to pills. Could you help me as to what was strongest pills or patch and how would I make the switch. I see my own doctor Friday. But saw you had knowledge of fentanyl and oxycodene and you could advise me,

I also suffer restless legs they are so tight and pain anything you know would help.thankyou.

[Bananas5 in reply to 1881ellie]

Doesn't matter how long ago post was put up. Will help if I can.

The Oxys are a real buggar to come off. Takes a very long time and I mean long.

I still maintain the Fentanyl patch was the best help David ever had. Now he is in bad pain even with strong doses of Oxycontin and Oxynorm for top up. Sometimes I wish he could come off everything and start again. But like you he has so many other conditions it just couldn't happen.

Certainly when he went on to Fentanyl 12 years ago he came off everything ( pain relief? Sure he had duhydracodeine for break through

Now he too has a GP apt on Wednesday to see if new Doc has any fresh idea.Let me know how you get on Friday and we can chat more.

Message me

x

[RAYJAYC in reply to 1881ellie]

I have to admit that I'm probably one of the luckier ones in that I swapped from Oxy to Fentanyl easily. No real withdrawal apart from wanting to sleep a lot! There were others but I'vejust put up with them and told myself that they're nothing compared to not having any background cover at all.

I suppose it's frame of mind, acceptance that this has to happen and a willingness to push through; the same attitude as living with pain!

RJC x

[1881ellie in reply to RAYJAYC]

Just a quick update,back on tablets let my body settle and to try fentanyl when I'm ready,I think it's the dihydrocodeine 240mgs a day iam finding hard to drop.doctor said he will give me something for withdrawls.he said like you I need to be in mind set to change.just scared xx

[RAYJAYC in reply to 1881ellie]

Sometimes, we just have to set ourselves a task and then go for it, no matter what hurdles, what problems or what behaviours we're used to!

Generally Fentanyl and Oxycodone can be converted to match each other sothere's no wwithdrawal symptoms. Ask your pain doctor to ensure that the strengths match up.

The dihydrocodeine may just need to be tapered off slowly; again, you'd need to request advice on how much to reduce by & when. Do you take the maximum amount every day or does it vary depending on your pain levels? Is it prescribed for regular use or as an 'as & when needed' med?

Maybe you can use something else for breakthrough pain that's compatible with your iliostemy? Hopefully getting your Fentanyl patch on and working will result in needing less & less pain meds anyway!

Good luck with it; get that patch on and 'go with da flow'!!

RJC

[1881ellie in reply to RAYJAYC]

I'm going to follow post as I've become oxycodene and dihydrocodeine tolerant and they want to switch me to fentanyl. I thought I was just to stop pills and put patch on.oh fear I couldn't stop.and my pain is awful I don't know answer.so you are brave to try this and I really hope it works for you.pain is horrible and withdrawls are as bad,hugs xx

[1881ellie]

Hi that sounds good as when I put fentanyl 50 on I didn't take, ease much oxycodene but still needed dihydrocodeine. Maybe they would let me stay on them.I'll know Friday. The 50 fentanyl did numb pain but so did the oxycodene for a while. Seems the body gets tolerant and you need more.let you know Friday what he says.thanks. xx

[Bananas5 in reply to 1881ellie]

Just a quicky.

If you reach tolerence level more doesn't usually work. Time ti change to an alternativ.

x

[1881ellie]

Thankyou I thought that so probably patch might be best for me xx

[Bananas5]

Update for anyone following.

David saw GP with interpreter and went off on completely different topic. However they got back on track eventually.

As we don't have full registration yet - 11th November will be due date- Doctor's hands are bit tied. However after then he will refer David to the pain clinic in the north and do a complete review of all his drugs but the Oxycontins in particular.

So muddle on a bit longer.

x