Anti Rejection Medication after a heart transplant is your security against fatal organ rejection. This is Part II of three posts which unpack Heart Transplant Medications.

How Many Tablets Do You Take After Heart Transplant?

Before the transplant you may have been taking a lot of medication to treat and manage your cardiac / pulmonary illness so you will be used to taking a variety of medications. However, the number of tablets you require to take each day is likely to increase substantially once you start anti rejection medications. Despite this you will discover that around the 6 month mark post transplant the volume of medications will reduce and become more acceptable. Hang in there!

Learning To Take Anti-Rejection Drugs After Heart Transplant

You will start to use a variety of medications after the transplant. Once you are up on the ward a nurse and pharmacist will provide you with a Transplant Medication Booklet. The booklet helps you to learn about each medication, including drug name, brand name and strength. In the booklet will also tell you each anti rejection medication’s purpose, as well as when and how to use it. It is vital that you are confident to self administer all your medications before discharge from hospital.

I am pretty sure that post transplant is the only time I have been in a hospital where a nurse required me to sort out and administer my own medication. I felt like such a grown up, LOL. By the way I do understand hospital protocols and why patients are mostly not allowed to self administer medications.

I discuss hospital protocols, patient advocacy and routines in more detail in these posts: Tips On Taking Medications After A Heart / Lung Transplant and Coping With Hospital Routines After A Heart Transplant.

How Long Do You Take Anti Rejection Drugs After Heart Transplant

You will be taking anti rejection medication for life to prevent your new organ being rejected. Anti-rejection medication is a crucial part of maintaining the health of a transplanted organ. As your new organ is not biologically your own, your body’s immune system will see the new organ as an invader or foreign body.

This is similar to how the immune system works if there are cancer cells or bacterial and viral infections. The immune system will attack the transplanted organ and essentially reject it. As previously stated, you will be taking anti rejection medication for life to prevent fatal organ rejection. The downside is, the side effects of the anti rejection drugs and the body’s lowered immunity making you more at risk of infections. 

Anti Rejection Information Booklet

The transplant team will provide you with a detailed information booklet. The following is only an overview of usual anti rejection drugs. Everyone may or may not experience different side effects from these medications. I provide the commonly known side effects and I describe my own experience with various side effects and suggest a few coping strategies that have worked for me. 

Types Of Anti Rejection Medications

Calcineurin Inhibitors

The most common anti-rejection medications consist of calcineurin inhibitors. These medications belong to a drug class used for long-term treatment in patients with transplanted organs or tissues. Additionally, calcineurin inhibitors are effective in managing inflammatory conditions such as dermatitis and rheumatoid arthritis. They are classified as “immunosuppressants” that function by blocking calcineurin, an enzyme that triggers T-cells in the immune system. T-cells, also known as T lymphocytes, are a type of white blood cell crucial for immunity.

Types of calcineurin inhibitors you may be prescribed include Tacrolimus, Ciclosporine, or Everolimus. You will need to have regular blood tests to monitor levels. I am on Tacrolimus and have not taken Ciclosporine. I tried Everolimus and only lasted 4 weeks due to the severe side effects.   

Tacrolimus (PrografⓇ and AdvagrafⓇ) 

Tacrolimus is the chemical name while Prograf and Advagraf are brand names of the chemical. Interestingly, Tacrolimus is a relatively new and preferred calcineurin inhibitor as it is usually better tolerated than the other options available. 

Common Side Effects May Include:

As with all medications, there will be side effects, however, you may not feel any of them at all or only experience them for a short time.

Reduced Liver And Kidney Function, 

While you are taking Tacrolimus you will have regular blood tests to monitor Tacrolimus (or Ciclosporine) levels and liver and kidney function. Tacrolimus has reduced or impacted my liver and kidney function where I had no previous issues before transplant.

A Doctor stated to me that there is no transplant patient that does not have some changes to liver and kidney function. Personally I try to avoid fat, sugar and carbohydrates in my diet and alcohol. I keep as well hydrated as possible to flush out my kidneys. 

Nerve Pain

Many patients describe nerve pain. It can occur anywhere. I feel nerve pain in my left shoulder blade. It feels like shingles but without the rash. It is always there, however, the intensity of the pain varies. I do not take any pain relief but I do know patients who have to use quite strong pain relief like Lyrica, Panadeine Forte or Paracetamol to manage the pain.  

Headache

Transplant recipients might find headaches come and go or change in intensity. Most patients I have spoken with say simple paracetamol helps. Getting enough sleep and rest is also helpful when I suffer medication induced headaches. 

High Blood Pressure

You will monitor your blood pressure daily and will need to contact the transplant team if your blood pressure is above 140/90 as this can be one sign of rejection. 

Tremor / Shaking, 

This side effect usually presents as shaking of the hands. I have experienced quite severe tremors where my whole left hand side shakes and I lose control of my left side and this has at times resulted in my collapsing to the ground.

This usually happens after I stand up after sitting for a little while. I make sure that I stand up slowly and stay near the chair, lounge or bed until I am confident that I will not collapse on the floor.  

Nausea, Vomiting, Diarrhoea And Loss Of Appetite, 

These side effects may be experienced regularly, sporadically or in waves. The transplant team can prescribe anti-nausea medication. I experience some mild nausea and find having smaller meals helps.  

Pins And Needles Of Hands And Feet 

I experience this side effect often as well as a burning sensation which becomes worse while having a shower. I spent the winter freezing while having lukewarm showers to prevent my hands and feet feeling like they were being boiled.  

Sleeplessness

A few of the anti rejection drugs will cause sleeplessness, particularly Corticosteroids. After persevering for weeks, I now take a sleeping tablet prescribed by the Transplant Doctor. As a sleeping tablet, I was initially using Temazepam. However, I was told the longer you use it the more you get used to it and will need to increase your dose.

When my Prednisone dose reduced to 10mg per day I swapped the Temazepam for Melatonin or a low dose antihistamine like Polaramine 2 mg. Seeing that sleep is a vital part of recovery weighing up your options is a discussion worth having with your Transplant Doctor.   

Watch out for a future post on practical tips for coping with insomnia and sleeplessness in hospital. 

Increased Sugar And Potassium Blood Levels

You will have regular blood tests to monitor for these. Potassium is a mineral which assists with nerve and muscle cell function, including those in your heart. Sugar in the blood may suggest medication induced diabetes which will need to be treated promptly.

Ciclosporine

Ciclosporine is the chemical name while (NeoralⓇ) is the brand name. Cyclosporine is an alternative drug, however, both are immunosuppressive agents used to treat organ rejection post-transplant. Like other immunosuppressants you may find an overlap with side effects. A \s you can see below the side effects are similar across Tacrolimus and Everolimus.

Common side effects may include:

High blood pressure

Shaking/Tremor

Nausea

Decreased absorption of Magnesium

Liver and kidney function changes

Headache

Increased sugar, cholesterol and potassium blood levels

Increased hair and gum growth

I am unable to comment personally on side effects as I have not been prescribed Ciclosporin to date.

Everolimus

Everolimus is the chemical name sold under the brand name, CerticanⓇ. While Everolimus is an anti rejection drug it works a little differently from the over two outlined above. Everolimus is a mTOR blocker (inhibitor) mTOR is a type of protein called a kinase protein. Everolimus prevents T cells and B cells multiplying that cause organ rejection after transplant. Interestingly, in some types of cancers  kinase protein or mTOR is switched on, this makes the cancer cells grow and produce. mTOR blockers like Everolimus can stop the growth of some types of cancer. 

As you continue to research anti rejection medications you may discover that a significant side effect or risk factor of anti rejection medications is skin cancers and other cancers. Positively, Everolimus has a protective factor against medication induced cancers as it blocks the production of this kinase protein. For this reason the use of Everolimus is popular amongst Transplant Consultants.

Common side effects include:

Swelling/fluid retention

Delayed wound healing

Increased cholesterol levels

Decreased white cell count Nausea, vomiting and stomach pain.

Lived Experience

My experience while on Everolimus was not easy. I experienced the less common but more severe side effects. Within 2 weeks I noticed that my eyebrow and eyelashes were falling out and the hairs on my legs were not growing back – a bonus! 

Burst Eye Blood Vessels

Very quickly after beginning Everolimus, I started to have bleeding blood vessels in my eye every 3 to 4 days. The eye became painful and felt swollen. If I bent over and put my head down a new blood vessel would burst. When I ceased Everolimus my eye improved.

Mouth Ulcers

Within a short time on Everolimus, I developed a severe case of mouth ulcers, the largest being over 3 cm and 5mm deep on my tongue. My entire mouth, gums and tongue were covered in ulcers. The tongue became fury like a thick shaggy rug and was tinged slightly green, delightful. Due to the body’s reduced ability to heal it took over 4 weeks after ceasing Everolimus for the ulcers to heal. I was in so much pain it rivalled the surgical removal (Enucleation) of my left eye in 2017. 

Despite trying various mouthwashes and ulcer creams I felt no real relief. When my daughters were developing mouth ulcers due to having braces on their teeth I discovered Kenalog. So, I started using Kenalog for my mouth ulcers and I had instant, yet short lived relief. At least I could tolerate the pain enough to get some sleep or even drink water. Kenalog washes off when you eat or drink and is a messy thick paste but it worked for me. The directions said apply at night but I applied it regularly throughout the day for relief and it assisted greatly in the healing process.

When I described the side effects, the transplant doctors ceased the Everolimus. The disadvantage of not being on Everolimus as a transplant recipient is that it seems to have a protective factor against cancers which potentially develop due to the anti rejection medication. 

Seeing that I have already battled Breast Cancer, I was disappointed not to be able to continue with Everolimus. The Transplant Consultant advised that I may be able to attempt to retake Everolimus in the future. Not in a hurry, not going to lie! 

Other Anti-Rejection Drugs: 

Corticosteroids: Prednisone / Methylprednisolone 

Corticosteroids suppress the immune system to prevent and treat rejection by reducing T-cells, B-cells and inflammatory cells from impacting the new organ. Prednisone is an oral tablet to be taken with food to protect your stomach lining. Methylprednisolone is the IV intravenous corticosteroid administered over 3 days in hospital when you are in moderate to severe rejection. After this IV you will need to start or increase the oral prednisone and taper or reduce the dose over time. It is dangerous to reduce your Corticosteroid dose too quickly as you risk organ rejection and symptoms of Prednisolone withdrawal. 

Moderate to Severe Organ Rejection

Initially I was on 60 mg of oral Prednisone after the transplant. I went into moderate to severe rejection 2 weeks after the transplant. Therefore, I was readmitted to St Vincent’s Hospital.

When in moderate to severe rejection transplant recipients are given a drip each day for 3 days containing 1000 mg of Methylprednisolone. After I was given this IV for three days, I was then discharged home and restarted oral Prednisone at 60 mg / day. This dose reduced each day by 5 mg until I reached 20 mg / day.

I stayed on this dose for many weeks until all heart biopsies and Cardiac MRI returned only mild rejection levels. Over the next 3 months I slowly reduced the dose by 2.5 mg each month. I am currently on 5 mg per day. 

Common Side Effects

Increased appetite

I craved carbs and fried foods for about 5 months. Post transplant as the Prednisone dose reduced, I was able to reduce simple carbs and sugars and found that I had less food cravings and my appetite evened out. 

Weight gain

This is a side effect most transplant recipients do not avoid initially after transplant. I put on 8 KG post transplant due to fluid retention and fat deposits caused by Prednisone. You will find as your dose reduces so will your fluid and weight. 

Mood changes / anxiety 

You may find you are more angry, moody or anxious. I became a terrible passenger and the worst backseat driver! Due to being constantly anxious and nervous all the time, especially while being driven in a car. My poor husband, as my carer, had to drive me everywhere for many months. You may find practising breathing exercises, relaxation and mindfulness techniques will make an enormous difference. 

Sleeplessness

Unfortunately you may find sleep and sleep quality is impacted by anti rejection medications, especially Prednisone. 

Acne

Luckily for me at my age it was a hard no / nope

Thinning of the skin / stomach lining

Prednisone may affect your skin. You may bruise easily, the skin will appear thinner and may break when slightly scratched or bumped. Moisturising skin every day will help it heal and protect the surface. My Immunologist suggested pure Vaseline and Caroline’s cream. Vaseline is an excellent barrier cream while Caroline’s cream has excellent emollient properties, this means it is easily absorbed into the skin. I have also found QV cream, Moo Goo, Sorbolene or Dermaveen helpful. 

Oddly, Sorbolene is also an excellent leave-in hair conditioner and styling product for curly hair. Simply apply it to wet hair. To apply to dry hair, use very wet hands to create fresh curls. 

Diabetes, increased blood sugar levels

When I go to cardiac rehab each week I ask the team to test my blood sugar levels before I start to exercise. It is important that you have some mechanism to monitor your blood sugar levels over time. Prednisone may increase your chance of developing Diabetes.    

Fluid Retention

Fluid retention goes with the territory I am afraid. You may be given fluid tablets which help a great deal. I avoid taking the fluid tablets in the morning if I have a long drive for a big day out at St Vincent’s for follow up procedures. Nothing worse than getting caught on the freeway during an accident in peak hour traffic after taking diuretics. 

Osteoporosis

Osteoporosis is a real risk after transplant and causes bone density changes. To prevent Osteoporosis you will be given a high dose Calcium and Vitamin D supplements to take each day. You will have bone density tests annually to monitor for the onset of Osteoporosis. 

Moon Face / facial swelling and stomach swelling 

Taking steroids such as Prednisone for an extended period of time will cause swelling. This facial swelling makes your face round, full, and puffy and is known as moon face.

This facial swelling will improve overtime. I experienced fluid retention and swelling of my face and abdomen. I put on 8 KG despite controlling what I ate and avoiding simple carbohydrates and sugar. My face became so round I looked like Bert Newton (RIP, I loved Bert). Every time I looked in the mirror I did not recognise myself.

Steve and I enjoying time together doing simple things before I became sick. These photos were taken before I started taking Prednisone and just before I became sick.

I felt really confronted and embarrassed by the round face. My face was out of proportion to the rest of my body. It was embarrassing, I either avoided going out or when I met people I felt compelled to explain that I was on high doses of Corticosteroids. 11 months post transplant and the facial swelling has improved by about 80%.  

The photo above was taken in June 2023 only 1 month after my heart transplant. My face was so swollen it felt tight and sore.

Reducing Prednisone

As you reduce your Prednisone dose you will see a gradual yet noticeable difference in the side effects of taking Prednisone. It is better to take Prednisone accurately and reduce it slowly. The last thing you need is to go into rejection and need 1000 mg for three days then having to slowly reduce your dosage over many months. 

The transplant team will advise you on how to reduce your prednisone dose. Usually, once you are on 20mg daily the team will advise you to reduce it by 2.5mg to 5mg weekly. Always take Prednisone as prescribed and reduce slowly. Never completely stop taking Prednisone without the advise from the transplant consultant.

The first photo is of me 9 months post Heart Transplant. You can see how the round face is improving. The last 3 photos are of Steve and I in Tamworth in April 2024. I was 11 Months post transplant and taking 5 mg of Prednisone.

Mycophenolate (Mofetil) and MycophenolateSodium (Myfortic)

Mycophenolate is an anti-rejection drug that works by decreasing the levels of T cells and B cells in the immune system. You will usually take 2 tablets morning and night. For efficacy, it is best to take them on an empty stomach and they can not be taken within 2 hours of magnesium, antacids, calcium and cholestyramine. You will need to wash your hands after using them and people not on Mycophenolate should wear gloves while handling the tablets. Mycophenolate comes with a warning for pregnancy and breast feeding and this could be an important discussion to have with your Transplant Doctors. 

Common Side effects:

Nausea/Vomiting, Stomach Pain/Gas /Bloating and or Diarrhoea/Constipation

Talk to your Transplant team or GP as they may be able to prescribe a medication to prevent or ease these Intestinal / Digestive Symptoms. Try having small meals and snacks to see if this settles your stomach. 

Tremor, dizziness, drowsiness 

You may have to be careful when standing up after sitting or lying down. Stand up slowly and remain near the chair bed or lounge until you are confident that you are safe to move around freely. It takes time to adjust to your new normal. Try to be mindful by being extra kind and tolerant of yourself. Allow yourself time to get ready and move through your day.

Trouble sleeping 

Sleeplessness is a common side effect of many anti rejection drugs. 

Decreased white cell count due to lowered immunity

White blood cells detect and fight infections. 

Liver function changes

Regular blood tests will monitor your liver function. Anti rejection medications will impact liver function and it is viewed as an unfortunate yet predictable result of transplant. It is important that you protect your liver as best you can by following a healthy diet, taking regular exercise and avoiding or reducing alcohol.  

Other Anti Rejection Drugs

Azathioprine

Azathioprine may interact with some medicines used for gout — particularly with allopurinol (Progout®, Zyloprim®). Potential side effects include diarrhoea, nausea, vomiting, and increased skin sensitivity to sunlight. It’s important to keep in mind that it can also affect liver function. 

Anti-Thymocyte Globulin And Basiliximab.  

Anti-thymocyte globulin reduces T-cell circulation, while basiliximab stops T-cell multiplication. These drugs are sometimes used in the immediate postoperative period for patients with poor kidney function.

As always, I encourage you to research and discover what works for you. If you have a message or tip please comment in the form below.

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