Living with opioid agonist therapy
Given the increase in the number of people on opioid agonist therapy (OAT), and the recognition of opioid addiction as a medical problem, it’s frustrating that there is still so much stigma surrounding the treatment. No one would think of scoffing at a person with diabetes for taking insulin, and yet, there are still many people who regard OAT as a sign of weakness or bad character.
You can’t deny that the stigma exists, but you also can’t let it get to you. When someone treats you in a way that lets you know they look down on you because of the treatment you are receiving, you can either ignore them, or you can educate them. If it’s someone you care about, or who is likely to make others in your situation feel badly about themselves, the best choice is to educate them.
There is a lot of stigma that goes with methadone. Everyone who is on methadone is on it for different reasons. Everybody has to be treated as an individual. Nobody should be banged together in stigma. It’s not helping anybody, especially people who are trying so hard. Things can only get better with more knowledge and understanding.
Ann, 42 | Methadone, 2 years, 5 years
My parents thought I was replacing heroin with something cheaper and legal; that it was the same thing except you’re drinking it instead of sticking it in your arm. Now my parents stand behind me 100 per cent. They got educated and they understand.
Brett, 50 | Methadone, 1 year
Succeeding with OAT requires the ability to recognize that you are not your addiction, and to advocate for yourself, challenge and educate anyone who treats you poorly because of your decision to use OAT.
Jessica, 36 | Methadone and
buprenorphine, 3 years
Current guidelines require that people starting out on methadone go to the clinic or pharmacy daily to take their dose under observation for at least the first two months of treatment. This is also the case with buprenorphine, although carry doses may be available sooner than with methadone in some situations. The daily contact during this initial period helps the staff to see how the therapy is working for you. They’ll be looking to see if your dose is enough or too much, if you are experiencing side-effects, and if you are using other drugs.
After two months, you may be able to begin to take home, or “carry,” doses. At the beginning you will be provided with one carry dose a week. Every four weeks you’ll be given one more carry dose a week, until you reach a maximum of six take-home doses per week. There may be some flexibility around this standard rate, depending on your situation, whether you are taking methadone or buprenorphine, and on your service providers.
Carry doses are available when you have progressed well in therapy, and are prepared to take responsibility for using and storing the doses safely. One requirement for carries is that you produce a certain number of drug-free urines.
You will be asked to sign an agreement stating that you take responsibility for the safe and secure storage of carry doses, and that you understand that the doses are to be taken by you and only you. Your carry privileges may be taken away if you fail to meet the terms of agreement or if your urine tests positive for drug use.
Before you begin to carry doses, you must agree to bring any empty or full dose containers back to the clinic or pharmacy at any time, if requested. Some clinics or pharmacies require that you return all carry dose containers once they are empty. You must also agree to provide a urine sample upon request. Giving away or selling carry doses may result in criminal charges being laid against you and in the suspension of your carry privileges.
You must come to the clinic or pharmacy to collect your carry doses. Home delivery is not available.
Your maintenance dose of methadone or buprenorphine could seriously harm or kill someone who has no tolerance for the drug. A small child might mistake your dose of methadone for ordinary juice, drink it, and die. Never transfer your dose to a container that might make it easier to mistake what’s inside. You are responsible for the safekeeping of your doses, and you will be held responsible if someone else takes your dose.
Even though carry doses are generally stored in childproof bottles, it is required that you store carry doses in a locked box, such as one sold for fishing tackle or cash. You may be able to buy one of these at your local pharmacy.
It’s recommended that you keep your methadone carries in the fridge.
Carry doses that are lost or stolen may not be replaced, and must be reported to police in order to alert the public and prevent harm. Loss or theft of carry doses may result in having your carry privileges suspended, meaning you will have to come to the clinic or pharmacy every day to take your dose. It is your responsibility to store your carry doses safely.
When you can’t get to the clinic or pharmacy
There will be times when you can’t make it to the clinic or pharmacy. It’s important that you don’t miss your dose in the following situations:
In general, follow these guidelines to help ensure you don’t miss your dose:
GOING OUT OF TOWN / OUT OF CANADA
It takes a little organization and thinking ahead, but if you want to travel, you can go a long way and still get your methadone or buprenorphine. You may be able to “guest dose” at another pharmacy, in another town or city, in another province, or even in another country. When planning a trip, talk to your doctor well in advance. If you are already receiving carries, and you have not had problematic drug use for months, your doctor may give “special carries” for work or vacation travel up to a maximum of two to four weeks at a time. Your doctor may also help to make arrangements for guest dosing.
If you have earned carry privileges, and wish to take your carry doses with you on a trip across the border, follow these guidelines from U.S. customs:
Methadone and buprenorphine are available as prescription drugs in many countries around the world. The INDRO website has information on travel regulations for more than 150 countries for patients participating in drug substitution therapy. The site includes, for some countries, names of providers and customs contacts. Follow up to be sure the information is up to date. If you don’t have access to the Internet, your pharmacist should be able to find out about the legal status and availability of methadone or buprenorphine in the country that you wish to visit.
If you are too ill to get to the pharmacy to collect your dose, contact your pharmacy to let them know. In extreme situations your pharmacist may be willing to deliver your dose and watch you take it.
If you are admitted to hospital, either as a planned visit or in an emergency situation, it’s extremely important that the staff there know that you are an OAT client. This is important not only so that you can receive your dose, but also because some other drugs can be dangerous if taken in combination with methadone or buprenorphine. Encourage the hospital staff to speak with your OAT doctor about your medication, and your care. If you can, it’s a good idea to take someone with you who can help with this communication. Not everyone who works in health care understands OAT, and the extra support can be helpful.
I had a stroke, and my counsellor came to the hospital and organized my methadone right away, and she came three or four times when I was in rehab. After, when I had appointments to test my abilities, she went with me. It was good.
Ruth, 64 | Methadone, 22 years
When I went to Emergency with a migraine and disclosed that I was on OAT, it was assumed that I was drug seeking. I was treated very poorly. The majority of stigma that I faced as a result of using OAT was from health care providers.
Jessica, 36 | Methadone and
buprenorphine, 3 years
If you have to spend time in a provincial or federal jail in Ontario, you should be able to continue your treatment while in jail, provided it is still the right treatment for you. Both the provincial and federal governments are striving to provide OAT to anyone who was receiving treatment before the beginning of a sentence. Methadone clients who have been to jail report that it can take a few days to get your first dose. If you have any problems with continuing treatment, contact your OAT doctor or clinic for help in advocating for you. Doctors serving jail populations in Ontario are either authorized to prescribe methadone or able to arrange that it be made available.
When I went to jail, it took four days to finally get my methadone. I told them when I got there that I needed it, but I guess the way the system’s running right now in jails, they’re all behind in everything, so that’s why it took them so long to come. After that they gave it to me every day.
Andy, 33 | Methadone, 1 year;
buprenorphine, 1 month
Some people are troubled by the side-effects of OAT, and others barely notice them at all. That said, side-effects tend to be more of an issue early in treatment, and when you are on a higher dose. Side-effects also tend to be stronger with methadone than buprenorphine. Be sure to talk with your doctor about anything you are experiencing that might be a side-effect, and try some of the tips for each of the common side-effects listed below.
There are things to help with all side-effects: don’t give up. It may be time to look at where your dose is at, you may be plateaued too long, you may be up too high, you may need to go down—something needs to be played with.
Ann, 42 | Methadone, 2 years, 5 years
Like other opioids, methadone and buprenorphine can cause constipation. Try to keep things moving by keeping active with any kind of exercise and by eating plenty of fruits, vegetables and other high-fibre foods. Prunes and prune juice are a good old-fashioned tried-and-true remedy. Beware of foods that are high in fat like cheese and pastries. These are harder to digest and tend to make your system sluggish.
If you’re not used to a high-fibre diet, go easy at first. Wash it all through with plenty of water. These foods can cause bloating and gas. Gradually your body will be able to process this diet without too much embarrassment.
If problems with constipation persist, talk to your doctor or pharmacist. The constipating effects of opioids are not something that people get used to with time. Use of regular laxatives is safe and may be needed. Fibre-based laxatives, (e.g., psyllium) are not recommended because they can increase constipation if not taken with enough water.
I wish I’d know that it binds you up, that you can’t go to the bathroom for days, sometimes a week, you get pains, sweating. It really hurts.
Paul, 57 | Methadone, 4 years
Dry mouth is a common side-effect of many medications. To protect your teeth, follow the dental routine recommended for everyone: brush and floss every day, go to the dentist at least twice a year and cut sugar from your diet. Drinking plenty of water and chewing sugarless gum can also help to relieve dry mouth. If the problem persists, your pharmacist may be able to suggest products that can help.
This persistent symptom can be difficult to control. Sometimes, if you are on a high dose, lowering the dose may stop the sweating, although some people continue to experience this side-effect even on a low dose. There is a medication that can help to reduce sweating, although it may worsen constipation; ask your doctor if he or she would recommend it. Lighter, natural-fibre clothes, strong antiperspirant and baby powder help some to feel less humid.
I never sweated until I started methadone—not a drop! I was prescribed something for the sweating, and I just had to take it for a bit, until I was at the right dose of methadone, and then I was fine.
Ann, 42 | Methadone, 2 years, 5 years
Not everyone gains weight when they go on OAT, but some people find that they eat more and are less active, and that the pounds pile on. Methadone and buprenorphine can slow your metabolism and cause water retention, which can also lead to weight gain. The best thing you can do is to get up, get out, walk, jog, take a class, join a team, do whatever it takes to get you moving—it will help you to feel better in your mind and body. If you don’t cook for yourself already, now could be a good time to learn how to make the fresh, healthy food your body needs to maintain a good weight and to feel great. Choose healthy foods that are high in fibre such as whole grains and fruits and vegetables.
I wish I would have known that it was going to make me gain 70 pounds; warn people that they may gain weight.
David, 56 | Methadone, 3 years
Some people on methadone or buprenorphine say they have little sex drive and are unable to experience an orgasm. Others say that since they are off other opioids and feeling better, their sex life has improved. It’s an individual experience.
All opioids, including methadone and buprenorphine, can lower testosterone levels in men, which can reduce sex drive and lower mood and energy. If you are a man and you are feeling these effects, ask your doctor to test your testosterone levels. Depending on the levels and where you are at in treatment, your doctor may suggest you take testosterone replacement medication. There can be some risks with this treatment, so be sure to go over these with your doctor.
Another possible reason for a change in your sex drive could be another medication you are taking. Mental health problems, such as depression, can also affect your sex drive. If you are having problems of a sexual nature, work with your doctor to see if there might be a medical reason.
Opioid agonist therapy and employment
Once you’re on a stable dose, the fact that you take methadone or buprenorphine shouldn’t affect your job. The only issues that might limit your choice of work would be travel or working in a remote area, which can make it hard to get to your pharmacy every day, and whether your pharmacy is open outside of your work hours.
For most jobs, there’s no reason to mention that you take OAT, and your employer has no right to know. If you wish to do a job that involves operating a vehicle, however, your doctor must be willing to “recommend” you for a licence. OAT clients applying for a commercial licence are considered on a case-by-case basis, and must prove that they are stable and show no other drug use on their urine test.
In the beginning you may need to take some time off work/school/life to fully commit to the program.
Jessica, 36 | Methadone and
buprenorphine, 3 years
Methadone has helped me be more active with my children and more productive at work.
Dan, 37 | Methadone, 2 years
I find it hard to maintain employment on this treatment because the clinic is only open so many hours a day, so if you are working you might have an issue getting there.
Josée, 34 | Methadone
If you are unable to take time off work, Suboxone (buprenorphine) is much easier to work on and stay active.
Gemma, 34 | Methadone and
buprenorphine, 4 years
Other health issues and opioid agonist therapy
OAT can be a great benefit to opioid users who have other physical and mental health issues. Because OAT allows you to lead a “normal” life, it’s easier to take care of yourself, to eat better, to get the medical care you need and to take your medications at the right times. OAT helps you to feel well and to be able to do the things you want to do with your life.
Be sure to discuss any prescription drugs you are taking with your OAT doctor. Some of these drugs may interfere with methadone or buprenorphine, and your dose may need to be adjusted.
If you are unhappy with your treatment, your first approach should be to talk it over with your doctor. If, for example, you feel your dose has not been adjusted correctly, explain what you feel. That might be all it takes to fix the problem.
If you feel there’s a problem with your treatment that hasn’t been fixed by talking to your doctor or counsellor, you may consider changing your provider. If you live in an urban area, there may be a number of doctors and clinics to choose from. You should be able to find one whose approach to treatment meets your needs. If you live in a small community, you might have to work it out or be willing to travel.
As a last resort, and if you feel the problems with your treatment provider are severe and remain unresolved, you can complain to the College of Physicians and Surgeons of Ontario at 416 967-2600.
Most of the professionals you’ll meet through OAT will treat you with respect and offer support and encouragement. But there may be exceptions.
The clinic I started with was extremely inflexible, treating everyone with the same cookie-cutter model. It felt impossible to gain their trust. I could not live with the stigma and poor treatment. I eventually switched treatment providers. Because my new doctor trusted me, I worked so much harder to make the treatment work.
Jessica, 36 | Methadone and
buprenorphine, 3 years
CHANGING OPIOID AGONIST THERAPY PROVIDERS
If you move to a different neighbourhood or town, or if you do decide you want to try another doctor or clinic, you can change your provider. All that it takes, once you identify where you want to go and they’ve agreed to take you, is for you to give permission to have your records transferred. There will be a form to sign. Ask how long the process will take.
Clients who break the rules outlined in the treatment agreement may be discharged from treatment. Reasons for discharge include:
If you are to be discharged, your physician or pharmacist will clearly let you know that your treatment will no longer be available through them (usually in writing) and the process for ending treatment. Your current provider will either try to transfer you to another physician or pharmacist or give you a reasonable amount of time to find treatment services elsewhere.