Help with managing medicines

After your surgery, you will need to take medications (also called immunosuppressants) to keep your body from rejecting the new organ. Once taken, they stay in your blood for a certain period of time. To protect your organ, the amount of medication in your blood must be maintained at the right levels.

Your transplant team will instruct you on how to take your immunosuppresants, and adjust the doses so that optimum levels of the medicines are absorbed in the blood. You must take the medicines every day at the same time to ensure these levels are maintained.

Missing even a single dose or stopping the medicines without guidance from your doctor can put your organ at risk. The amount of medications will reduce over time, but you will have to take them for the rest of the life of your transplant.

It can be tricky to keep to a routine with your medicines. Recipients sometimes find it difficult to remember the right doses, the combination of pills prescribed, and to take them at the same time every day.

To stay on track easily, familiarise yourself with the following:

Double-lung recipient Lauren Rowe on organising medications:

It is advisable to have drugs organised in a pill box. Setting up a pill box will help you get familiar with your medication and the doses.

Ensure you have adequate repeats on your scripts when you visit your transplant doctor. Plan well in advance to replenish your supply so you don’t run out.

Start making a habit of taking the medicines at the advised times as soon as possible. Some recipients set alarms on their watches and phones as reminders to help them keep to a routine.

Keeping a list of the pills you take, along with the doses, in your wallet or bag can be handy. Remember to update the list each time the doses change.

Call your doctor if:

  • You cannot take your medicines by mouth for any reason
  • You think you’re having a reaction to the medication or have any unusual symptoms
  • Medication from the pharmacy looks different than the medication you had before
  • You’re not sure what dose to take. Doses can change frequently and may not be the same as what is printed on the label
  • If a doctor (other than your transplant doctor) prescribes a medication
  • You need to take medications for pain relief, cold and flu medicines or any other over-the-counter medications. Also seek approval before you take any aspirin or non-steroidal anti-inflammatory drugs

You can find information on your medication at the Therapeutic Goods Administration website. Enter the trade name or the active ingredient in your drugs to learn more.

Call your doctor

Taking medication with or without food

You might have noticed stickers on some of your medications that say “Take on an empty stomach” or “Take with food.” It’s important to understand how food impacts the way drugs work so you get the most out of your treatment.

When you swallow a medicine, it gets absorbed by the body and the amount absorbed depends on whether your stomach is full or empty. Therefore certain medicines should not be taken with food. The food in your stomach can delay or decrease the amount of drug that is assimilated in your blood. If the amount of anti-rejection medicine absorbed is less than expected, there is a risk of organ rejection.

Some medicines need to be taken with food to work better and cause less side effects, e.g. it is recommended to take prednisone with food. On an empty stomach, the drug may irritate the stomach lining and cause stomach upsets.

Your transplant team will give you information on when is best to take each medication. It’s important to take your medicine in the same way each time, so that the amount absorbed will be consistent.

Why you need to take your medication at the same time each day

When medicine is taken, the amount of drug absorbed in the blood increases to a peak, then decreases 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 anti-rejection drugs are carefully scheduled so there is always enough drug in your body to prevent rejection of the transplanted organ. You should take your anti-rejection drugs at the times agreed by your transplant team to ensure the correct amount of drug is in your blood at all times.

Side effects

You will be prescribed a balanced regime of anti-rejection medicines so that side effects are minimised while preventing organ rejection. The severity of symptoms differ in each patient. You must report anything untoward to your transplant doctor or nurse. Remember that not everyone gets these side effects.

You may also find symptoms reducing over time as the doses of your medicines are cut back.

Side effects can include:

High blood pressure (hypertension) and diabetes. These can be managed with medications

Overgrowth of gum tissue between your teeth. Maintaining oral hygiene, brushing and flossing regularly can minimise this effect.

Hunger cravings and weight gain. The weight gain is sometimes difficult to get rid of. Consider healthy food choices, portion control and physical activity to manage this.

Psychiatric effects such as mood changes. Everyone has ups and downs; that is normal, but if these patterns of low moods can’t be shaken, see a healthcare professional

Diarrhoea, nausea and vomiting. Your doctor will be able to prescribe medicines to help.

Visual changes, cataracts. These changes may not be noticeable at the initial stages. Get your eyes regularly checked to monitor for any anomalies.

Muscle cramps or muscle weakness. Dehydration can sometimes cause this. Keep your fluids up, and talk to your doctor about symptoms and treatment

Stomach irritation (ulcers and/or heartburn) can be temporary and manageable with gastric acid-reducing medicines as prescribed by your doctor

High potassium or low magnesium levels. Talk to your dietitian since this can be managed through your diet

Trembling or shaking. You might notice this impact the most a few hours after taking some medicines when the concentration of the drug peaks in your blood. Things like gripping small things or writing can be tricky, but does not affect mobility and only minimally impacts everyday life.

Insomnia. Maintain good sleep hygiene by staying away from caffeine and stimulants at bedtime, exercising regularly, limiting daytime naps to 30 minutes, and avoiding foods that can cause indigestion (fatty foods, carbonated drinks). Make a habit of keeping to a regular bedtime with a relaxing routine (warm showers) and a pleasant sleep environment.

Thinning of bones (osteoporosis) and bone pain, particularly in recipients who are on medication for a long period of time. A healthy calcium-rich diet and regular weight-bearing activity like walking will help maintain bone health. You may need to take calcium supplements

Increased hair growth/hair loss. This can happen in the first year, but many recipients have reported their hair growing growing back once the doses of the medications were reduced.

Headaches. There can be a number of reasons for this, including dehydration. Make sure you drink plenty of fluids and check with your doctor if headaches persist.

Acne. Wash the affected area with mild soap and scrub gently with a clean wet cloth to remove skin, oils and bacteria. Rinse completely to remove soap and leave your pores open and clean. Stay away from cleansers and soaps containing creams or oils, as they will further aggravate the acne. Check with your transplant doctor for medicines that can help.

Over-the-counter and generic medications

You may often hear about generic medications. Similar to the medicine your doctor might have prescribed, ‘generic medicine’ is a common term used when there is a less expensive brand of medication available.

The amount of active ingredient in the generic medicine, purpose of its use and administration would be the same as the brand on your prescription. The generic medication can vary in the ingredients used to bind the formulation and in the way it’s manufactured.

managing medicinesIn a complex medication regimen for an organ transplant it is recommended that you do not substitute between brands of medications with the same active ingredient.

If your pharmacy dispenses a medicine that looks different than before, call your transplant doctor and ensure it’s safe to stay on the same dose. Your blood levels may need to be monitored if you switch manufacturers.

Nonsteroidal anti-inflammatory drugs (NSAID) can interact with transplant medication and cause serious health hazards. Unless specifically advised by your doctor, do not take aspirin or anti-inflammatory drugs like ibuprofen as they may cause stomach irritation and kidney impairment.

Check with your transplant doctor before taking any over-the-counter medications like cold and flu tablets and anti-diarrhea medicines, as they could hide more serious conditions that should be investigated.

Storing your medicine

  • Store in a cool dry place away from direct sunlight
  • Moisture can cause harmful changes medicine. Do not store your medicines in the bathroom or in an area where moisture levels are high
  • If you’re using a pillbox, keep it tightly closed
  • Retain your transplant medications (e.g. cyclosporin, tacrolimus, everolimus, sirolimus) in their foil packs or blister packs until ready to take them
  • Do not crush or cut tablets, capsules and caplets unless instructed
  • Do not store them in the refrigerator unless instructed
  • Do not freeze liquid medications
  • Keep them away from children, pets or animals

Managing Medicines

Interactions

Beware of what reacts with your drugs. What might be good for people who haven’t had a transplant might not be good for recipients. Check with your doctor before commencing any new medication.

Drug

Whether you are prescribed a short-term course of medicines (i.e. antibiotics) or are treated for another chronic condition (long-term therapy), be aware of interactions with your anti-rejection medications. For example, there are many drugs that may cause the cyclosporin or tacrolimus level in the body to change significantly.

Some antibiotics such as erythromycin, roxithromycin, fluconazole can lower the amount of anti-rejection drug in the body causing a high risk of rejection, whilst drugs such as rifampicin, St John’s Wort and phenytoin can cause high levels of drug to remain in the body, increasing the risk of toxic side effects.

Food

Check with your pharmacist to determine foods that you need to avoid or restrict whilst taking transplant medication, as they may interact. A common fruit for recipients to avoid is grapefruit and products containing grapefruit.

Chemicals present in grapefruit can affect the way transplant medications are absorbed in the body. If you’re taking tacrolimus, grapefruit can increase the tacrolimus levels in your body leading to potentially dangerous side effects.

Superfoods like goji berry, spirulina and kale have not been tested as yet for interaction with transplant medication and must be consumed with caution.

For more on eating to keep your transplant safe, check out our transplant-friendly recipes.

Herbal remedies

There are many herbal supplements available, often marketed as cures for illnesses. While some herbal medicines can be harmless and possibly helpful, there are others that can pose a serious health risk or interact with anti-rejection medications.

Abnormalities in liver function tests have been reported after use of certain herbal preparations, and there have been a number of rejection episodes reported in liver transplant patients using St John’s Wort, which people take for depression. These herbal preparations may interact with the absorption or metabolism of your anti-rejection drugs, making them less effective in the long run.

In general, it is best to avoid herbal remedies unless you have specific clearance from your transplant doctor.

Acknowledgements

Transplant Australia acknowledges that each patient experience is different and in no way provides this information as a substitute for medical advice. Please contact your transplant unit if you have any questions or concerns regarding your medication.

Transplant Australia gratefully acknowledges the valuable contribution of Elaine Chan, Renal Specialist Pharmacist at Westmead Hospital, in reviewing this article.