Missing doses, not taking the prescribed dose of anti-rejection drugs (also known as immunosuppressants) or not taking them at the prescribed time, may lead to transplant rejection. It is therefore very important that you take your anti-rejection drugs exactly as your transplant team have explained.
There are many factors that can affect the way anti-rejection drugs work inside your body, including age, weight and gender. Each transplant recipient will be prescribed a slightly different anti-rejection regimen that is right for them. The way some anti-rejection drugs work can also be affected by food or other medications taken at the same time as the anti-rejection drugs.
Do not make any changes to the type or dose of anti-rejection drugs you are taking, without speaking to your transplant team.
The transplant360 web app includes a medication reminder which can be used to help make sure all doses of your medicine(s) are taken on time.
Stephanie and Melissa both had kidney transplants when they were young but stopped taking their medications and eventually needed a second transplant. Here they talk about their experiences and what they have learnt.
Melissa: My name's Melissa Gordon. I’m 23 years old.
Stephanie: I’m Stephanie Hodgkiss and I’m 27 years old.
Melissa: I had my first transplant when I was 11; I waited 5 months on the transplant list. It lasted round about 6–7 years. I was 16 [or] 17 and I was at college, and that’s when the kidney had failed and I was taken into hospital and put back onto dialysis. When I first had my transplant, obviously being so young I was more dependent on my Mum giving me my tablets, or just saying “have you taken the tablets” and saying “yeah, I’ve taken them”, and then by the age of 13 I was given more responsibility. I was dead on with my tablets because I was always told, you know, “take your tablets”, “you’ve got to take your tablets”, so obviously I was scared not to take them. And then I was at high school one day, and I was sitting in a lesson, and I sat and I thought “ooh, I’ve forgotten my tablets”, and I thought “oh, something’s going to happen”, and I don’t know why [but] I felt like I thought “I’m going to die”, and I got home and thought “as soon as I get home I’ll take them”, but I forgot. And I took my night time tablets, and I thought “gosh, I hope I’m going to be OK”. I woke up the next morning and thought “I’m fine”. I felt just normal. I thought “oh, OK, that’s weird”. So I carried on taking my tablets, and I thought if I forget once in a while [then] that’s fine. Then I think it started to sink in that I just thought the kidney was accepted in my body, and that I was just normal and that I could get up and just get ready and go to school without taking my tablets because I thought, “yeah, the kidney doesn’t need its tablets anymore, it's fine, I’m cured”.
Stephanie: I was 11, I was just leaving primary school. A specialist diagnosed me. Then I was on dialysis for 2 months, then had my kidney and had that for about 3½–4 years. The tablets: from the start, I didn’t want them at all but I took them. I took them all for a bit, can't remember how long, but then I started missing them. And that went on for, well, quite a bit, the doctors would always say “have you taken your tablets?” and I’d go “yeah, I’m taking them”. They [would] go “well, we’ll up this because your levels are a bit low”. So they would up a tablet, or put me on another one, but I’d do exactly the same thing. I hated the steroids. I was big near enough all the way through because of the eating, I hated it, and I’d miss them, I didn’t want them [any] more. The side-effects of the steroids [were]: they'd make you eat, eat loads; the puffiness; the putting on weight; the hair round the side of the face; your eyebrows. You know, you’d try [to] put make-up on and try to hide the fluffy hairs on your face. Get the Immac cream out. You’d be in the bathroom trying to shave it off. It was horrible, it just didn’t look like me at all, I didn’t like it. That was the main reason I stopped taking the steroids. Towards the end, when it was near enough rejecting, we were supposed to go on holiday and I started feeling, you know, really bad. And I think it was just a few days before we went on holiday, my Mum called the hospital and told them my symptoms, and they said “OK, the kidney is failing, she needs to come in.” I remember them saying I’d have to go on CAPD. At school, I’d be on the 4 bags. I have one in the morning, one at dinner time at school, and then the rest at home, and it didn’t bother me at school. It didn’t bother me. I pushed it as far as I could, they said “you’re going to have to go on haemo[dialysis]”. I was on that, for, I think, it was just 3 years. Then I was getting sick of the haemo[dialysis] and 3 times a day. I think it was because I wasn’t getting better, I didn’t have the energy, and I couldn’t do the things I wanted to do. I realised “I’m a bit older now and I’ve grown up”, and some of the doctors reassured me, and the nurses, that the tablets wouldn’t be like last time. It’s changed a lot.
Melissa: Then I was back on dialysis after my transplant, I used to go to dialysis and it was full of really elderly people. They were sitting there. I was looking at some of them and thinking they may never get the chance for a transplant. I’ve had one and I’ve wasted it. I used to sit there and think I’d just made the biggest mistake ever. To be honest, I had all the help around me that I needed, I don’t think anyone was at fault but myself, to be honest, because it was in my mind that I was cured and I didn’t feel as if I needed to tell anyone I wasn’t taking my tablets.
Stephanie: Taking the tablets when I was young, there [were] a lot but I think, if there [weren’t] that many maybe it would have helped a bit. I think every young person misses their tablets.
Melissa: The main reason I take my tablets is, one, it’s in my mind it’s nothing that can be cured, once you’ve got your kidney you’re not going to be cured, you’ve still got to take your tablets.
The main reason that I take my tablets is because it’s my Mum that gave me the kidney and my Mum came forward. The only time she has ever been in hospital is to give birth to me and my sister and to come and see me when I was in hospital. She’s never had an operation. She’s never been to hospital for anything and then suddenly she is put under anaesthetic and she has gone through this major operation to give me a kidney. My mum didn’t have to do that but she did because she wanted to. If ever I get a chance at a second kidney, I’m just not messing it up because it’s not something you should really take for granted, having a kidney.
Stephanie: It’s not going to go away, you either take them or go [through] what we have been through. You’ve either got the problems with the bones, not feeling very well or anything, not doing what you want to do, constantly in pain. If you want to go through that, fine. If you want the problems, carry on. If you don’t, then you will have to take the tablets and you will have to grow up. New pills are coming out, they are getting [fewer] and you do feel normal. It’s a small price to pay, yeah, it is.
Why do I need to take my medication before or after food?
The rate at which some medicines work depends on whether your stomach is full or empty.
When a drug is swallowed, it travels to the stomach and then moves to the intestines where it is absorbed into the blood. The speed at which this happens depends on how quickly the digestive system moves its contents from one section to the next.
When a meal is consumed at the same time as taking medication, the drug can stay in the stomach longer than if it were taken on an empty stomach; this can delay absorption into the blood and could result in blood drug levels that are too low to prevent transplant rejection.
In contrast, if a drug is meant to be taken with food, taking it on an empty stomach may result in blood drug levels that are too high, which may cause unwanted side effects.
Why do I need to take my medication at the same time each day?
When a drug is taken, the levels in the blood increase to a peak and then decrease over time. The drug concentration in the blood must be high enough to produce the desired effect, but low enough so as to not cause too many side effects.
The times prescribed for taking your anti-rejection drugs are carefully scheduled so that the drug concentration in the blood is always enough to prevent rejection of the transplanted organ.
You should take your anti-rejection drugs at the times agreed with your transplant team to ensure the correct amount of drug is in your blood at all times.
Help managing your medications
You can check that you have been taking your medication correctly over the past four weeks by downloading the BAASIS© questionnaire. Once you have completed the questionnaire, please discuss your results, and any questions you may have, with your healthcare professional.
If you need help to take your medication correctly, download Tips for Managing Your Medication.
If you have problems with your medication schedule, you should talk to your transplant team to see if any changes can be made to help.