Moving On After Transplant

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Immunosuppressant medicines after a kidney transplant

What anti-rejection medicines do, which groups of them public bodies name, and what the sources say about side effects, interactions, blood tests and missed doses.

Updated 10 October 20269 min readGeneral information, not medical adviceBy the editors

On this page
  1. What anti-rejection medicines do
  2. The main groups of medicines sources name
  3. Why taking them as prescribed matters
  4. Side effects the sources list
  5. Foods, supplements and other medicines that interact
  6. Blood levels and why they are monitored
  7. Missed doses and running short
  8. Questions worth taking to your team
  9. Frequently asked questions
  10. The short version

Anti-rejection medicines are the part of life after a kidney transplant that does not go away, so it is natural to have questions about them. What do they do? Why do the sources keep saying they matter so much? What is safe to eat or take alongside them? This page sets out what public health bodies in the UK and the United States say about immunosuppressants, which are medicines that turn down the immune system's response. Practice differs between transplant centres, so the medicines, blood test schedules and advice you are given may not match what is written here, and your own transplant team has the final word. We have kept to what the sources say, and we do not give doses or advice on when to take anything.

What anti-rejection medicines do

The immune system is the body's defence network, and its job is to deal with anything that looks foreign, such as bacteria and viruses. A transplanted kidney looks foreign too. The National Kidney Foundation explains that the immune system will try to fight, or reject, the new kidney, which is why anti-rejection medicines are needed. The American Kidney Fund describes the same idea: they lower the immune system's response so the new kidney can stay healthy and keep working.

There is a balance built into this. The National Kidney Foundation describes the goal as stopping the immune system from fighting the new kidney while keeping it strong enough to fight other germs. Kidney Care UK puts it similarly. Because of that balance, most people need a combination of medicines, and the National Kidney Foundation notes that everyone's risk of rejection differs, so the team designs a regimen (the set of medicines and doses) for each person.

The main groups of medicines sources name

The two American sources describe three stages. Induction medicines are strong medicines given through a drip around the time of the operation. Maintenance medicines are the daily ones, which the American Kidney Fund says are taken for the rest of the life of the kidney. Treatments for rejection are used only if the body begins to reject the kidney. The first months, when these stages overlap with a lot of other medicines, are covered in the first months after a kidney transplant.

For the daily medicines, the sources group them in a consistent way. The table draws on the National Kidney Foundation's groupings and on side effects listed by NHS Blood and Transplant. It is a guide to vocabulary you may hear, not a list of what you will be given.

Maintenance medicine groups and what two sources say about them
GroupMedicines the sources nameNotes from the sources
Calcineurin inhibitorsTacrolimus, ciclosporinNHS Blood and Transplant says high doses of tacrolimus can impair kidney function and that blood tests are needed. The National Kidney Foundation warns against grapefruit with this group.
SteroidsPrednisolone (the National Kidney Foundation lists prednisone)NHS Blood and Transplant lists high blood pressure, increased appetite, thinned skin and raised blood sugars.
AntimetabolitesMycophenolate, azathioprineNHS Blood and Transplant lists diarrhoea or nausea and reduced white blood cells for mycophenolate. The National Kidney Foundation says all forms of mycophenolate increase the risk of pregnancy loss and birth defects.
Other optionsSirolimus, everolimus, belataceptThe National Kidney Foundation says these are usually not part of the plan right after transplant and are options for people with problems on the first group.

NHS Blood and Transplant is clear that centres use different medicines, so it does not list every possible regimen. It also says the doses of immunosuppressants usually reduce over time, but that some will be needed for the lifetime of the transplant. The National Kidney Foundation adds that medicines can change over time, and that you should always follow your most recently updated medication list.

Why taking them as prescribed matters

This is the point every source returns to. NHS Blood and Transplant says it is very important to take medicines exactly as the transplant team has prescribed them. The National Kidney Foundation is blunter: it says anti-rejection medicines are for life, that stopping, missing or skipping them will very likely cause rejection, and that this holds true no matter how you feel.

The feeling-well trap is real, because rejection is often quiet. The American Kidney Fund says there are usually no symptoms when the body starts to reject the kidney, and its summary line is worth quoting: "Keep taking your medicines as prescribed, no matter how good you feel!" The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) says rejection often begins before you feel any changes, and that routine blood tests reveal early signs.

Cost can also tempt people off schedule. The National Kidney Foundation calls lowering or stretching doses to save money "extremely dangerous" and says to contact the centre's financial coordinators or social workers. The funding rules it describes are American, but the principle in both US sources is to tell the team rather than ration the medicine.

Side effects the sources list

NHS Blood and Transplant describes these as powerful medicines that can have side effects, and the sources agree that they vary from person to person. The American Kidney Fund lists upset stomach or nausea, tremors (shaky hands), trouble sleeping, headaches and hair loss as common short-term ones. NIDDK adds that some medicines may fill out the face or cause weight gain, acne or facial hair, and that not everyone has these effects.

Over a longer period, the lists get more medical. NHS Blood and Transplant names weakened bones (osteoporosis), weight gain, high blood sugar, increased blood pressure and stomach problems. The National Kidney Foundation lists high cholesterol, a greater chance of infections and an increased risk of some forms of cancer. The American Kidney Fund mentions gout, liver problems and skin cancer, especially in sun-exposed areas, and uses the term NODAT for new-onset diabetes after transplant, meaning diabetes that appears after the operation in someone who did not have it before. Kidney Care UK says it is best to avoid sunbathing, use a high-factor sunscreen and cover up in sunny weather, and recommends regular skin checks. Long-term health gets fuller treatment in staying well long term after a transplant.

On what to do about a side effect, the sources agree: say so. The American Kidney Fund says many can be managed by changing the dose or switching medicine, and the National Kidney Foundation says to report side effects even if blood levels are in the goal range. Adjusting a medicine yourself is never what they suggest.

Some symptoms are more urgent. The American Kidney Fund says to tell the transplant team right away about signs of infection (fever, chills, cough or unusual tiredness), swelling, weight gain or changes in how often you pass urine. NIDDK says to call the centre right away if you are unwell, and notes that anti-rejection medicines can dull the symptoms of problems such as infection. More is in signs of rejection and infection to report.

Foods, supplements and other medicines that interact

An interaction means one substance changes how much of a medicine reaches your blood, making it act stronger or weaker than intended. The National Kidney Foundation's page on diet after a kidney transplant names grapefruit and grapefruit juice, pomegranate and pomegranate juice, and Seville oranges, adding that ordinary oranges are fine in moderation. It warns that some citrus-flavoured drinks contain grapefruit extract, so ingredient lists are worth checking. A UK hospital leaflet from Cambridge University Hospitals gives the same three and mentions mixed fruit juices and star fruit too. Food is covered in diet and fluids after a kidney transplant.

Herbal products and over-the-counter items are the other category. The National Kidney Foundation lists St John's wort, echinacea, ginseng, feverfew, some herbal teas and vitamin C among those that can interact, and asks readers to talk to their transplant doctor or pharmacist before starting any new supplement. The American Kidney Fund names St John's wort, the antibiotic erythromycin, certain blood pressure medicines, anti-inflammatory painkillers such as ibuprofen unless a doctor approves them, and supplements containing potassium or magnesium. Kidney Care UK names erythromycin, clarithromycin and St John's wort.

The common thread is a habit more than a list. The National Kidney Foundation says that if anyone outside the transplant team prescribes a new medicine, the transplant team should hear about it before you start it, and the same goes for over-the-counter medicines, herbal supplements and vitamins. The lists differ between sources and countries, which is a reason to ask rather than assume that something not named is safe.

Blood levels and why they are monitored

Several of these medicines work within a narrow range, so teams measure how much is in the blood. The National Kidney Foundation puts it simply: with too much medicine, side effects may be worse, and with too little, the kidney may not be protected enough. Blood tests are more frequent just after the transplant and less frequent as time goes by. The American Kidney Fund adds that a level which is too high can affect the kidney, but that this does not mean the medicine is bad for you, because the team monitors results and adjusts.

NIDDK says teams also order regular tests of liver and kidney function. Kidney Care UK gives specific instructions about clinic mornings for certain medicines. We have not repeated them, because they depend on the medicine and the centre, and the team will tell you what applies. What the tests mean is covered in clinic follow-up and what the tests mean.

Missed doses and running short

Everyone forgets things, and a routine that has to survive holidays and tiredness is a big ask. The sources do not offer a rule for every situation, and we do not either. What they say is consistent: tell the team. NHS Blood and Transplant says that if you miss any doses you should tell your kidney transplant team, and that if you have trouble remembering your tablets the team may be able to help. The American Kidney Fund says that if you forget a dose or run out of medicine you should call your transplant team right away, and that the team can tell you what to do and may help you get a short-term supply.

The National Kidney Foundation lists memory aids that patients have found useful, such as alarms, pill boxes, a medication list in sight and a copy carried to appointments. Which medicines you take, and when, remains your team's instruction to give.

Questions worth taking to your team

The National Kidney Foundation suggests questions that fit most situations: which maintenance medicines your centre uses, whether any will interact with your other medicines, whether a new problem could be caused by your medicines, what the alternatives are if you cannot tolerate a side effect, and how often you will need blood tests. It also suggests asking who to contact if you plan to become pregnant, a topic with its own page: pregnancy and fertility after a kidney transplant.

Frequently asked questions

Do anti-rejection medicines have to be taken for life?

The American Kidney Fund says most people need to take them for the rest of their lives to keep the transplant working. NHS Blood and Transplant adds that doses usually reduce over time, but some immunosuppressants are needed for the lifetime of the transplant. Whether any change is appropriate is a decision for your team.

Why do I still need blood tests when I feel well?

Because feeling well is not a reliable guide. The American Kidney Fund says there are usually no symptoms when the body starts to reject a kidney, and NIDDK says rejection often begins before any change is felt. Routine tests are how teams catch early signs and check that medicine levels are where they want them.

Can I take painkillers from the chemist?

Do not assume so. The American Kidney Fund lists anti-inflammatory painkillers such as ibuprofen among the things to avoid unless a doctor approves them, and the National Kidney Foundation asks readers to tell the transplant team about any over-the-counter medicine before taking it. A pharmacist or your team can say what suits you.

What if a side effect is wearing me down?

The sources point the same way: report it. The American Kidney Fund says many side effects can be managed by changing the dose or switching medicine, and the National Kidney Foundation says to speak up even if your blood levels are in range.

The short version

Anti-rejection medicines stop the immune system attacking the new kidney, and the sources are united that taking them as prescribed matters even when you feel perfectly well. Side effects are common and usually manageable, but only if the team hears about them. Grapefruit, herbal products and over-the-counter medicines can change how these medicines behave, and regular blood tests exist to keep the levels in the right place.