- You will have to take medicines to keep you healthy and prevent rejection and infection. You will be taking immunosuppressants (medicines to stop rejection) antibiotics and medicines to prevent some complications of transplant.
- You must always take your medicines as you have been instructed.
Here are some important points to remember about your medicines:
- The drugs and doses have been individually selected for you; follow the instructions very carefully.
- Never miss a dose or change the amount you are taking unless you are instructed to do so by your Transplant Team.
- Not taking your medicines at the right time and at the correct dose can cause transplant failure.
- Certain food products can interfere with your drug therapy e.g. grapefruit juice.
- All medicines have side-effects, some minor, some more unpleasant. If you are troubled by side-effects talk to the Transplant Team or your general practitioner.
- Drug therapies change as new research is carried out.
After your transplant you will need to be on immunosuppressive drugs for the rest of your life. These drugs help to stop your body from rejecting your new organ, but also increase the risk of infections and may cause other side-effects. The risk of developing certain cancers may also be increased. There are a number of immunosuppressive drugs available. A combination will be chosen to suit you.
- Ciclosporin (Neoral ®) or Tacrolimus (Prograf®)
- These are immunosuppressive drugs which require regular blood tests to check the level in your blood. The dose is then adjusted to suit you personally over a period of time and it is important that you take it exactly as you have been instructed.
- You will be taking one of these two medications- it is important that you stay on the same brand unless the transplant team change it. This is because different brands may be absorbed differently.
- The dose is taken twice daily at twelve hourly intervals at 10am and 10pm.
- There are several strengths available so that your dose can be adjusted. Be careful to take the correct dose as the packaging may look similar.
- Food can affect the absorption of these medications; you may take these medications with or without food but it is important that you are consistent. If you usually take Creon® we may ask you to take some Creon at the same time to improve absorption (this predominantly applies for patients with CF or chronic pancreatitis).
- If your stomach is not working well we may advise you to open the tacrolimus capsules and put the powder under your tongue.
- The capsules are stored in a protective foil covering. Do not remove the capsule until you are ready to take it.
- Do not drink grapefruit juice or eat grapefruit.
- Herbal products can alter levels in an unpredictable manner and must be avoided.
- On clinic days please do not take your Prograf/Neoral until after the blood sample has been taken as blood levels will indicate if a dose change is required.
What are the side-effects of ciclosporin or tacrolimus?
- A slight shaking of the hands, and muscle cramps. Drinking orange juice or tonic water can help reduce cramp pain.
- Hot tingly hands and/or feet (usually during the first week of treatment).Changes in body hair. Do not use electrolysis as it can increase the risk of infection. Use a hair removing cream or a cosmetic bleach.
- Swollen or bleeding gums. Good oral hygiene may help to prevent this.You should also see a dentist regularly.
- Gout (swollen, hot or painful joints) – there are medicines to treat this, please check with the transplant team as not all are suitable for transplant patients.
- High blood pressure. Can be treated with medicines.
- Decrease in kidney function.The dose is adjusted over time to minimise this problem.
- Increase in blood sugar levels.
- Increase in cholesterol levels.
- A. Mycophenolate mofetil /Mycophenolic Acid
- Mycophenolate mofetil is an immunosuppressive drug used as an alternative to azathioprine.
- Mycophenolate is available as a liquid 1g/5ml, 250mg capsules and 500mg tablets, Mycophenolic acid is available as 180mg and 360mg capsules.
- The capsule/tablet should be swallowed whole, and taken twice daily at twelve hourly intervals at 10am and 10pm unless otherwise directed.
- Take with or after food to reduce the chance of stomach upset.
- There are different brand of mycophenolate mofetil available – it is ok to take different manufacturers’ brands.
What are some possible side effects of Mycophenolate Mofetil/ Mycophenolic Acid?
Side-effects of Mycophenolate include:
- Upset stomach including diarrhoea, nausea and vomiting – minimized by taking with food.
- Mycophenolate can also cause blood disorders that put you at risk of infection and bleeding. You should report any unexpected bruising or bleeding.
- Regular blood tests are undertaken and the dose ofmycophenolate altered accordingly.
- You must ensure that you do not become pregnant while taking this medicine. Also female partners of male patients treated with these medicines should avoid becoming pregnant during treatment and for at least 90 days after the last dose.
- B. Azathioprine
- Azathioprine is an immunosuppressive drug used as part of the combination regime.
- Azathioprine is available as a branded preparation called Imuran®. other manufacturers’ tablets can also be taken as well as the branded product.
- It is usually taken once a day, with or after food to reduce the chance of stomach upset.
- A medicine used to prevent gout, called allopurinol, interacts with azathioprine and when used together your azathioprine dose will need to be reduced by your Transplant Team.
What are some possible side effects of azathioprine?
- Nausea, vomiting and diarrhoea (minimized by taking with food).
- Liver disorders – this is monitored by blood tests.
- Blood disorders that put you at risk of infection and bleeding. You should report any unexpected bruising or bleeding. This is monitored by blood tests
- Rashes and hair loss can also occur rarely.
- Regular blood tests are undertaken and the dose of azathioprine altered accordingly.
Prednisolone is usually taken as a single dose in the morning with or after breakfast to reduce the risk of stomach irritation. The dose will be high at the start but will be reduced every few days/every week.
You must never stop taking prednisolone abruptly – and never run out of tablets.
Steroids are sometimes given by injection to treat acute rejection.
What are some possible side effects of steroids?
- The high doses of steroids taken soon after the transplant can affect your mood, you may feel grumpy or irritable.
- You may find yourself eating more while you are on steroids.
- Steroids may increase your blood sugar, in some cases this may need to be treated with insulin.
Osteoporosis – you will be put on medicines to prevent this.
The immunosuppressive drugs help to stop your body from rejecting your new organ but also make you less able to fight infections.To try to prevent various infections occurring we use a combination of medicines.
Co-trimoxazole (Septrin ®)
Co-trimoxazole is an antibiotic. It is used at a low dose to
prevent a type of pneumonia called Pneumocystis.
It is taken as directed by the transplant team and is usually life long treatment
Side-effects include: Nausea, and occasionally skin
You may be started (or restarted) on colistin via a nebuliser to reduce the amount of bacteria in your lungs, it is very important that you make time to take this medication twice daily as prescribed.. You may not use the nebuliser you had before the transplant as this can lead to re-infection of your lungs. You will have to get a new nebuliser and you may have to pay for this yourself.
This antibiotic has many uses and can improve lung function and help to prevent rejection. It may cause nausea.
These may only be needed for a few months after transplant to reduce the risk of viral infection. The transplant team will advise you when these may be stopped.
Aciclovir is used to prevent viral infections which can cause cold sores, shingles and chickenpox.
Ganciclovir and/or valganciclovir are used to treat or prevent cytomegalovirus (CMV) infections (see Section 5) in some patients.
Valganciclovir tablets should be taken with food.Side-effects include: Blood disorders (these are monitored closely), reduction of fertility (in both men and women), nausea and vomiting and headaches; some patients suffer abdominal pain and constipation.
You must ensure that you do not become pregnant while taking this medicine. Also female partners of male patients treated with these medicines should avoid becoming pregnant during treatment and for at least 90 days after the last dose.
Is an antifungal drug used to prevent and /or treat fungal infections.You may be prescribed Voriconazole depending on your condition.
The dose is adjusted according to your weight and size.
The tablet should be taken at least one hour before or one
hour after food.
Voriconazole can alter blood levels of ciclosporin ,tacrolimus or sirolimus; we will reduce your dose if we start you on voriconazole and check your blood levels more often if voriconazole is started.
Side-effects include: Headache, dizziness, feeling sick, anxiety and flu-like symptoms.
The mouth contains bacteria which can infect the lung so it is important to follow good practice for mouth care. This will help to reduce the spread of bacteria into your lung.
Chlorhexidine is used to help prevent, and treat, infections of the
mouth and helps inhibit the formation of plaque on teeth. You can continue using this lifelong if you wish.
Nystatin is a mouthwash used to prevent fungal infections. .It is usually discontinued a few months after transplant.
It should be used after chlorhexidine mouthwash so that the medicine works in your mouth for longer.
Most patients experience some discomfort after the operation and there are a number of painkillers which can be used to help during this period. Immediately after surgery you may be on a pain killing injection into the spine (epidural).As soon as you can eat and drink this will be changed to other pain control medication. You may be discharged home on paracetamol, opioid (morphine) type pain killers and some medicines for nerve pain. These will be reduced as your condition improves. If you are discharged on fentanyl patches please follow the instructions for disposal carefully.
- New Medications
Transplant medications are very powerful and can have several unwanted effects on the body. Some patients develop high blood pressure, diabetes or osteoporosis as a result of the medication.
You may need to restart other medications that you have been taking for example if you have Cystic fibrosis you will need to restart Creon, vitamin supplements, ursodeoxycholic acid, nebulised antibiotics.
We recommend that all patients who are awaiting transplant or have had a transplant have annual influenza vaccine each year and Pneumococcal Vaccine every five years.
Not all vaccines can be given to transplant recipients and care needs to be taken to avoid the LIVE vaccines. Remember that as your immune system is suppressed you may not have full effect from any vaccine and you should not assume that the vaccine has been effective.
Please check with the transplant team if you have questions about travel and vaccines.
Which commonly used medications do not require alterations in immunosuppression in Heart and Lung Transplant patients?
Patients should try to standardise the time to get a trough morning level for Cyclosporin, Sirolimus and Tacrolimus as close to 12 hours after their previous nights dose and prior to taking their calcineurin inhibitor (CNI) that morning- usually this is just before 10am- even 1 hour out can significantly alter the trough serum level.
These EDTA samples for CNI (with request form, patient details, date and time) should be sent by Swift post in a leak proof primary receptacle (blood tube/universal container), a leak proof secondary packaging (eg sealed plastic bag) and an outer packaging of adequate strength for its capacity, mass and intended use to:
C/o Post Transplant Nurse Specialist,
National Heart and Lung Transplant Unit,
Mater Misericordiae University Hospital,
What are the phone and fax numbers used by the post heart and lung transplant team?