G’day all. I’m an Aussie living in the UK. Not terribly bright if you have RA. Rust has replaced the tan I once had. 😉Diagnosed about 11 years ago whilst in France where I lived for 14 years. We’ll looked after there but took 6 months to get into the system here. I am on 25mg MTX injection. Was on prednisolone in France - low dosage. Told to stop it here where MTX was increased from 12.5 to 25 gradually .Compared to a lot of you posting on here, I’m lucky. I’m a writer one finger. Had lots of novels published and cope okay most of the time. No idea about the drugs mentioned here many of which you’re on. Consultant says not to change meds. I have osteo too. . Struggle some days. I take about 1.5 g of para a day max and have been on 15 to 30 mg codeine. I’ve been reluctant to post because it seems so many are worse off than me. My question is about codeine. It works for me. Maybe it’s the other issues I have rather than RA. The pain blurs together and is all over in waves. Recently some health professionals helping with my balance issues caused by a recent tia have told me I’m stupid to be taking it as it only works for a few days not years. It’s dangerous and you get the gist. My doctor and RA consultant have no issues and my RA nurse says I’m the best judge. I know my limits with it. I realise I’m going to get loads of different answers from you guys. Nurse said morphine but I’m not ready for that yet. I have a high pain threshold and feel disingenuous much of the time as I can get around quite well. Stairs are an issue but I can climb them most of the time. Thanks for reading my rabbiting on. I shall try to comment more but my experience is limited on advice about other drugs. I am amazed by how well you are all coping with such a debilitating disease.
Question about codeine.: G’day all. I’m an Aussie... - NRAS
Question about codeine.
I have been on co-codamol for 5 years as the only pain mgmt I could tolerate. My GP and I have been discussing coming off it as he believes long term it is not going to help as it has shown to be addictive as well. I only take 2 a day 3 on very bad days as I have made it a huge thing not to take too many as the only other thing would be morphine which I really don’t want.
So once I come off another drug I am weaning off this is my next one to slowly reduce and try to get off.
So my point of view is , does it feel like it’s working or is it a habit unintentionally as such? The only way to know like me is to ask the GP for a weaning system and maybe you can see how much it actually does for you once you get past the “ addictive “ part of weaning off them.
Hope that makes sense my brain bit foggy today
Thanks for your input. I did come off them for 2 weeks without withdrawal issues which surprised my GP. I don’t think I went back on them because I was addicted but simply to ease the pain after a particularly arduous day. I do a lot of heavy DIY on ladders etc and only know if I’ve overdone it a couple of days later. I can’t stop doing what I enjoy. Kind of you to comment Deeb1764. Good luck with your issues.
I used codeine for several years when diagnosed with Stills disease aged 17. From my mid 20s onwards I’ve used OTC codeine based meds for relief. Recent health investigations found diverticulitis possibly caused by codeine so I have stopped and waiting for contact from my surgery we both some help.
Thanks for your reply Stills. I have had diverticulitis for as long as I can remember but take note of your advice. It’s a complex problem. I wish you well in your consultation and hope you get answers.
Thanks and wishing g you better days too
I take codine also it depends on the day. Last week I felt better on the 15mg ones than the 30mg but it could be in my head.
Years ago my boss said
"Dr's differ, patients die".
He was one of life's optimistists and Scottish.
Still this is the issue no medical person has all the answers and we need to do what works for us. I know some will have developed issues on codine and hate it .
So far I'm ok with it so I'm taking it.
Very useful advice wilbertjellyfish (great name). Opinions differ and in the end it’s up to us. It’s a fine line between what we think cod is doing and what it actually does. After all if a placebo works then who are we to argue. The mind is a wonderful thing and it’s our greatest weapon against pain. As you say depends on the day. Thanks for commenting.
Hi Tassie
I have been taking zapain (paracetamol/codeine) for many years now and have reduced the amount I take a little. I’ve never asked for more or felt I needed to so I’m happy they help me at the current dosage. As with many of us on here, we have multiple health issues, some very serious, so have to take the meds that help us get through the day. It is very individual as to what works for pain, I find heat pads seem to soothe my pain somehow. Hope you are able to find the right level of meds that help you function.
I used to live in Brisbane and travelled to various parts of Australia but never got to Tasmania. I’m assuming that’s where you are from? Love the Tasmanian devils though, they are so funny. Very sad they are dealing with those awful facial tumours though 😔😔
Lovely to hear from you Kati66. As you say Tassie Devils look funny but I wouldn’t try to pet one. Like you I find heat help if pain is localised. Otherwise I’d look like Michelin Man with them all over. I agree with you. We manage our own pain. Interesting that you take a combo drug. I prefer the control of separate ones. Some days I don’t have codeine at all. Glad it’s helping you. I’ve been using hot water bottle but that has own issues with heat rash. Might look into pads . Thanks for taking time to comment. Good luck with your issues.
Hi Been on codiene
Long term
Not addicted
Does help
Constipation issues
Get meds for that for when it arises
Thanks Osteoarthritisra. Good to know I’m not alone is my use of codeine long term. Apparently it might affect balance too. Take care.
I have been described codeine 15mg since 2009 and to take it at night only, and only when everything else had failed. To date, I'm still following this advice and I have never needed to get a stronger prescription because the codeine still works.I take codeine only 1x15mg or 2x 15mg once or twice a week but only after trying to calm my pain down first with piroxicam gel and paracetamol. I take daily 30mg etoricoxib, but if my pain is too bad, then I take 60mg.
Pain is a major issue but I refuse to take anything else, such as morphine because I don't want to add addiction to my health problems.
Good to hear your story pineapple_head. Must admit I don’t know other drugs you mentioned but I’m encouraged by your history and assessment. Like you morphine is no go for the present. I do use diclofenac gel but mainly on my hands when and if. That has issues with aspirin so it’s a balancing act. Thanks for your valued input.
Hi TassieTiger, Thank you for your kind words. Just to clarify, Piroxicam gel is very similar to diclofenac gel. It is an anti inflammatory that you apply to the skin. Etoricoxib is a cox2 anti inflammatory and this is stronger than Naproxen or Diclofenac and appears to be safer on the stomach. I would love to be able to be well enough to stop the etoricoxib, but it is not possible at present. I also inject with Cosentyx and will start Methrotrexate in October. I suffer with Axial Spondyloarthropathy. It is another auto immune type of arthritis that affects mainly the spine. Good luck with your battle and I hope that you can find relief soon.
Thanks for clarifying . So many words I don’t know medically. The MTX takes about 12 weeks to kick in . I was put on it immediately but changed to injections very quickly. I can’t imagine how bad I’d be without it. Best wishes for the changeover.
Technically codeine is turned by the body into morphine. It depends how efficient your body is at doing it what dose you actually get. Some people are poor at metabolising it and get a small dose, others can get a big dose, most of us somewhere inbetween. Most people don't get addicted to morphine at low doses, but some people seem to have what's described as an 'addictive personality' and do so easily. I wouldn't worry about it too much. The only problem comes if you want to go to a country where codeine is banned like Greece and a few others. You need a covering note to take your supply into the country.
Wow oldtimer2. Knew about the metabolism to morphine but not about codeine being banned in some countries. It was fine in France as were the corticosteroids I had as gel and injections. Uk has a different outlook to them so I’ve had to make adjustments. I appreciate your comments and shall continue with the codeine but watching my use of them . I have liver and kidney issues already but have regular blood tests. Kind of you to comment. All the best.
As you've already been well advised by others I can only add one thing. Please don't hesitate to post here as we can support each other. Other people's suffering does not diminish your's.
Kind words. And yes I shall post more hopefully with advice or support for others out there feeling alone. As with the other respondents it’s good to hear from you.
Hi, I've been on 30/500 cocodamol (2x4 per day) + extra codeine as required as I max out on the paracetamol bit for several years now for pain relief. I've had several pain reviews and the Drs. are reluctant to move me onto a stronger opiod (I don't get on with the non-opiod options. I also take Amitriptyline at night for pain relief. The Drs have all said that my body gets use to opioids so a higher dose is required to be effective and if they move to a stronger opioid exactly the same will happen and I'll end up on a higher and higher dose of stronger and stronger opioids. Further spine surgery has too high a risk for me at present.
I don't seem to suffer from any addiction or withdrawal symptoms.
Drs all seem quite happy to leave everything as is at present.
Thank you for your reply. It seems you have a load more pain problems than me. I don’t know how you cope. In retrospect I may be concerned over nothing but stories such as yours highlight the vast differences in our conditions and what we need to take. We have to trust in our doctors but verify it’s right for us. I appreciate it for you reminding me that our body gets used to opioids but we are each different in our tolerances and reactions. Take care of yourself. Hopefully things will improve. You seem to understand what you’re doing.
If the codeine helps you get through the day and your liver is coping and your RA doctor and nurse dont see the problem, ignore everyone else! If the doctors concerned with the TIA didnt say the codeine increases your TIA risk, then they should not concern themselves with your RA care, as it is unlikely they are expert in that area too. You are dealing with a long-term chronic painful condition and you are functioning well and still have the admirable ability to pity others in worse situations, whatever you are doing to get you through the day is obviously right for you. I am allergic to all painkillers so have to resort to gin ( in the evening!) when I have pain which is not recommended by anyone but we all do what we have to to allow us keep ploughing on! Even if you were addicted to the codeine in some way, what would that matter, once it wasnt causing e.g liver problems? Listen to your nurse, you are the best judge of the pain relief you need to cope. Best of luck and congrats on your literary achievements
Thanks for the support and well reasoned argument. Sometimes you begin to doubt yourself and what you think is right when others are so adamant that you’re wrong. I wish you all the best with your gin painkilling meds😉 I tend to avoid alcohol as I can’t process it well. We each deal with pain in our own way. Appreciate you taking the time to comment.
Re the writing it helps me focus on other things than pain. I’m lucky I have that.
I should have added I only need one gin, on the odd occasion I have pain, alcohol is certainly best avoided! Best of luck!
Noted. Take care.
People's experience of codeine varies. I take it and have taken it for years and have no problems other than I need to take Movicol daily as codeine causes constipation. However my husband can't take it as it causes him to have unsettling dreams, and side effects which outweigh benefit. It seems to depend on how an individual processes the breakdown of the drug in the body.
Kind of you to comment strongmouse. As you say we’re all different. We try things and if they work okay if not then at least we know. Best wishes to you and your hubby.
I took it for a number of years until it made my migraines worse. I was told to come off it by neurologist.
Thanks for advice. I quite understand your situation. Strangely headaches are one pain I don’t normally have but I’ll keep an eye on that since you mentioned it. Hope you’re coping okay without it.
Hi Tassie Tiger. Everyone has different degrees of pain, so never feel you shouldn't post because you think your pain isn't as bad as some others. Pain is pain and is a personal thing. Some people have a higher pain threshold than others. I have a high pain threshold probably because I've had sJIA for over 50 years and AS for 3years. I have pain 24/7, but we all have ways of coping.
With regards to codeine and any other opiates, I'm unable to take them very often at all, unless I have acute pain such as after surgery. Opiates make me sick and dizzy and I then can't function, so I have had to find alternatives. Codeine is known to be addictive, and sometimes we just get used to taking a concoction of drugs without thinking about it. I am not one to say don't take, but maybe now you have questioned it it may be time to look at alternative ways to manage your pain.
Exercise is key to keeping your muscles strong and protecting your joints, which in turn can help with the pain. I have had an exercise programme for over 50 years, although during my 20's 30's I admit I wasn't as religious with my routine as I am now. I'm now 56.
I also take complementary meds as well as biologics and prednisolone to help with the inflammation. I was also lucky enough to be referred to a comprehensive Pain Management Programme at Walton Hospital, for six weeks. It was very helpful and they talked about the addictive nature of opiates. The programme gave us alternative ways to manage pain. I was pleased to hear I was already doing what they advocated, but I learnt so much more.
Maybe look into methods that work for you that don't involve opiates and then devise a reduction programme for the codeine with your rheumatologist, but I'd advise you to do it gradually so your body gets used to receiving less of the drug.
We all find our own way around this debilitating disease, and support and proactiveness are key to getting you through it. I hope you find a way. xx
Appreciate your sage comment. I do try complementary medicines like cbd oil which did work in the past. Maybe time to try that again. I’ve been to a pain clinic but decided it wasn’t for me as I feel I manage better than many who needed the place more. I can always return. Your journey sounds pretty tough. I do a lot of diy work plus walking and find that helps me better psychologically than exercise as such. As you say each to their own. I admire your efforts . Take care.
I have heard CBD oil works for some, so may be have a relook at that if it worked for you in the past. xx
You are very welcome. You sound like you are on it in terms of what works for you. Walking is brilliant for keeping going, no matter how small. Good luck and take care xx
You are very welcome. You sound like you are on it in terms of what works for you. Walking is brilliant for keeping going, no matter how small. Good luck and take care xx
I get so angry when I hear that people in pain need to not take something that works because some person predisposed to addiction is using heroin now. I have Ankylosis Spondylitis and my hips and low back some days make me miserable. I have had injections and even tried the stim implant with no success. Then was given a low dose of Percocet after abdominal surgery and was like wow I am pain free yet 100% functional. No high, no drowsiness, no side effects at all. I am 57 and take 3-5 Percocet a day and some days 1-2. It has now been at least 10 years. I was a weekend warrior back then and took muscle relaxers and a biologic. I am now on my lowest dose of Percocet and just the Biologic. I walk everyday and stay active in general. I have been blessed with a fantastic Rheumatologist and Pain Management Dr. Even my Pharmacists are fantastic. They have seen me struggle and they have seen me try to get something else to work during the horrible time we all went through with the opioid lies. I am the typical “you look fine” person. I wake up two to three hours before I need to be anywhere to give my medication time to work. I had two of my Dr’s get arrested for writing to many scripts and scripts for drugs way stronger than the patients needs. I was never one of those but because I was their patient I was lumped into the scarlet letter group. I have days I am scared it will stop. I have been looking at grounding and have just been afraid to pull the trigger. My experience is things like that work on people that are more nieve. They also tend to be happier but of course it has its drawbacks. Because ai don’t want to be made a fool I am almost always skeptical which takes away the ability to be open minded lol. Like many have said if you can afford it try it maybe it’s YOUR answer. That all any of us want. It’s like picking a spouse my wife would not be good for a lot of men and it took me 32 years to find my grounding partner hopefully all of us find something that works and find it in less than 32 years 😜
So kind of you to reply. Sounds like you’ve had a pretty horrendous journey to get to your manageable place now. Congratulations. By comparison I’ve been lucky to not have had too many traumas getting here. Good advice for the most part and people who listened to me. You’re right about motivations from well meaning do Gooders. Based on the comments by your good self and others I now have a more focused way on where I’m going. Thanks. Hope your future is what you want.
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