Transplant

Welcome to the Mayo Clinic Transplant page! Here you can learn about heart, liver, kidney, pancreas, lung, hand, face, and blood and bone marrow transplant, living donation, read articles from the Mayo Clinic team, patient stories and much more. Our transplant page is designed to bring relevant and informative transplant information directly to you.

Follow the Transplant page to receive email notifications when new blog posts are published. Interact by commenting and sharing your thoughts.

PUBLIC PAGE
Jun 30 12:30pm

Immunosuppression: Watching For and Managing Side Effects

By Kristin Eggebraaten, Relations Coordinator, @keggebraaten

Following transplant, you will need to take medications to prevent your body from attacking/ rejecting your new organ(s). These medications are called immunosuppressants. You will likely be on a combination of these medications as each of the medications work in different areas of the immune system. The reason for using medications that work in different areas is to allow for lower doses of each medication to be used in order to 03-2020 Immunosuppression bloglower your risk for side effects that can be associated with these medications. Even though we take initial steps to lower this risk, side effects can still occur with these medications. In this blog post, we will tell you what to look for and what to do if you start to experience side effects from your immunosuppressant medications.

Most immunosuppressant regimens will contain a type of medication called a calcinuerin inhibitor. Common names of medications in this group include:

  1. tacrolimus (Prograf®, Astagraf XL®, and Envarsus XR®)
  2. cyclosporine (Sandimmune®, Neoral® , and Gengraf®.)

Sometimes side effects from these medications are a result of an elevated blood level.

Side effects that can be associated with tacrolimus based products include:

  • Shakiness/tremors
  • Diarrhea
  • High blood sugar levels
  • Headaches
  • Sinus congestion
  • High potassium
  • Hair thinning or loss
  • High blood pressure
  • Kidney problems

Side effects that can be associated with cyclosporine based products include:

  • Shakiness/tremors
  • Gum thickening
  • Headaches
  • High blood pressure
  • High potassium
  • Leg cramps
  • Kidney or liver problems
  • Extra hair growth
  • Nausea
  • High blood sugar levels
  • Increased triglycerides or cholesterol

Most immunosuppressant regimens will also contain a type of medication called an anti-proliferative agent. Common names of medications in this group include: CellCept® (mycophenolate mofetil), Myfortic® (mycophenolate sodium), and Imuran® (azathioprine).

Side effects that can be associated with mycophenolate based products include:

  • Diarrhea
  • Higher risk of infection due to lower white cell counts
  • Increased risk for birth defects if you become pregnant while taking or handling this medication
  • Cold sores or open sores in your mouth or on your lips
  • Low red blood cell counts or anemia
  • Low platelet counts
  • Unusual tiredness
  • Malignancy (specifically skin cancers)

Side effects that can be associated with azathioprine include:

  • Malignancy (specifically skin cancers)
  • Liver problems
  • Low red blood cell counts or anemia
  • Low platelet counts
  • Higher risk of infection due to lower white blood cell counts

Most immunosuppressant regimen will include a type of medication called a corticosteroid. How long you might need this particular type of medication will depend on the reason you needed a transplant, your risk for organ rejection, and the type of organ you receive. The most common medication in this category is called prednisone.

Side effects that can be associated with prednisone include:

  • Decreased appetite
  • Weight gain
  • Indigestion
  • Thin, shiny skin
  • Rounding of your face
  • Higher risk for infection
  • Swelling in your legs
  • Acne
  • Bone injury or osteonecrosis
  • Changes in mood
  • Sleeping problems
  • Muscle cramps, pain or weakness
  • Bone thinning or osteoporosis
  • High blood sugar levels
  • Cataracts
  • High blood pressure

In some instances, other categories of immunosuppressant medications will be utilized in place of or in combination with the previous categories that we described. One of these categories is called mTor inhibitors. Common names of medications in this category include: Rapamune® (sirolimus) and Zortress® (everolimus).

Side effects that can be associated with this category of medication include:

  • Longer time for wounds to heal
  • Swelling in your legs
  • Fever
  • Foamy urine
  • Mouth sores
  • Low red blood cell counts or anemia
  • Skin rash
  • Increased triglycerides or cholesterol
  • Diarrhea
  • Lung problems

In kidney transplant, an alternative to the use of calcineurin inhibitors is a medication called Nulojix® (belatacept). This medication is a monthly intravenous infusion.

Side effects that can be associated with this medication include:

  • Swelling in your legs
  • Higher risk of infection due to lower white blood cell counts
  • High blood pressure
  • Low red blood cell counts or anemia
  • Post-transplant lymphoproliferative disorder (lymphoma)
  • Headaches

In order to decrease your risk for these side effects, it is important to take your medications exactly as you are told. They should be taken at the same time and in the same way every day. For example, with some medications, it does not matter if you take them with food or not. It does matter if you are consistent with whether or not you take your medications with or without food. You should pick one way and do it that way every day. In some instances, the amount of medication you are taking can affect your risk of having side effects. To make sure you get the right amount of medication, your immunosuppressant medication levels and other laboratory values are checked with blood tests. For the blood test results to be accurate, you need to take the medications at the right time. If you are unsure of the correct time, you should contact your nurse transplant coordinator or transplant pharmacist. Getting your blood tests drawn as recommended may help to prevent some side effects.

Some medications and foods may change how immunosuppressant drugs work. Before you use any other medications, talk to your nurse transplant coordinator or transplant pharmacist so they can make sure the new medication is safe to use with your transplant medications. You should do this for both prescription and over-the-counter medications. Over-the-counter medications would include vitamins, supplements, and herbal products. Some common foods and beverages that may affect how your body uses your immunosuppressant drugs include grapefruit or grapefruit juice, sodas with grapefruit juice in them (ie. Squirt, Fresca, or Sundrop), Pomegranate and pomegranate juice (ie. Pom), Seville oranges, also called Spanish, sour or bitter oranges, and more than 6 clementines per day. These foods should be avoided if you are taking a tacrolimus or cyclosporine product , sirolimus, or everolimus.

In the event that you do develop a side effect that is particularly bothersome to you and is affecting your daily activities, talk to your transplant physician, your nurse transplant coordinator, or transplant pharmacist about the best way to deal with the side effect. Some side effects of immunosuppressants can be treated by changing to an alternative medication or with the addition of a new medication. An example of this would be treating high blood pressure with a blood pressure lowering medication.

Some side effects may last only a short time and be mild. Others may last a long time and be more serious. Some ways you can protect yourself from long term side effects include keeping your bones healthy, caring for your teeth and gums, and protecting yourself from the sun.

For more information or questions about your particular side effects, please contact your transplant team.

We know this post was long with a lot of important information to learn. What advice to others do you have about transplant medications?

HELPFUL LINKS

 

I can notoriously be concentrating on something so hard that I lose track of time and look up finding that I am well past half an hour late with my antirejection, meds. I've learned to put insistent reminders in place by utilizing a phone app which audibly signals the time to take meds and records my doing so when I check them off as taken. This has been so valuable to forgetful, distracted me! I also set a back up reminder with a phone alarm that goes off half an hour after the appointed med-taking time. Together, with these, I manage well. Otherwise, on my own, I'd be a disaster. Part of this is advanced age, but the other part is just plain old individual nature.

COMMENT

I know, I am the same way. I kind of have to force myself to go and take my meds the second the alarm goes off. Too easy to get distracted by something.

COMMENT

My husband received a kidney transplant 10/1/2016. He returned to work and has been diligent about taking his medications, having missed maybe two or three times in almost four years. He uses an alarm on his watch to remind him.

He keeps an extra day or two in pill set up in each vehicle, plus at his job. We rotate those into usage every month or so. This way there is less chance for him to be caught without his meds. He has told me he appreciates that I always ask that he took his doses of meds. He knows it comes from a place of love and concern for his well-being, not nagging!
Ginger

COMMENT

Great advice, Ginger. I have totally forgotten myself a couple of times.I am 8 years post with liver. I remember the panic of when I forgot the first time. I thought death was knocking on my door !

COMMENT
@silverwoman

I can notoriously be concentrating on something so hard that I lose track of time and look up finding that I am well past half an hour late with my antirejection, meds. I've learned to put insistent reminders in place by utilizing a phone app which audibly signals the time to take meds and records my doing so when I check them off as taken. This has been so valuable to forgetful, distracted me! I also set a back up reminder with a phone alarm that goes off half an hour after the appointed med-taking time. Together, with these, I manage well. Otherwise, on my own, I'd be a disaster. Part of this is advanced age, but the other part is just plain old individual nature.

Jump to this post

@silverwoman. I don’t know what I would do without my watch to remind me. Before I had this watch I used my phone but this works better for me. I’m on sirolimus so only take it once a day. My watch vibrates on my wrist to wake me. I get up, take my pills, and try to get another hour of sleep so I can eat when I get up. I like that it doesn’t wake my husband too.

They tell you to take these with or without food but to be consistent. At some point it dawned on me that maybe if I took them without food I could take a lower dose so I spoke to my transplant team and they had me get tested and I was able To go from 4mg a day to 2.5. I just figure the less medicine, the better.
JK

COMMENT

One of the common side-effects mentioned is diarrhea. I had diarrhea from the immunosuppressants but it turned out that they had actually triggered lactose intolerance. Now that I’m aware and do not have food with lactose I no longer have diarrhea.

I really miss caprese salad and things like lasagna. As is typical, I can eat aged cheese so now I make our pizza and use provolone rather than mozzarella.
JK

COMMENT
Please login or register to post a reply.

Invite Others

Send an email to invite people you know to join the Transplant page.

Please login or register to send an invite.