Immunosuppression: Watching For and Managing Side Effects

Jun 30, 2020 | Kristin Eggebraaten | @keggebraaten | Comments (31)

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?

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@contentandwell

@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

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I take tacrolimus and it says take without food

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@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.

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I am surprised. One of the side effects is loss of concentration, Micophenolate and mood swings, prednisone

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@contentandwell

@stan1357 Have you checked all of the websites that list side effects? Some don't list rare side effects. My immunosuppressant, sirolimus, seems to be causing one of the rare side effects - joint and muscle pain. I'm not entirely sure of that yet, I have three medications that can cause that, and I have managed to eliminate one from being the culprit and am in the process of eliminating another. I can't eliminate sirolimus so I just have to do it by process of elimination - the other two can be eliminated for brief periods.

I mentioned a while back in this stream that the immunosuppressants had caused lactose intolerance. That lasted for quite a few months but thankfully has gone away! I can now eat foods with lactose with no negative effects. I think when people have diarrhea from immunosuppressants that's the first thing they should look at, the possibility that it is lactose intolerance.
JK

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I think prednisone causes joint pain and weakness, also osteoporosis

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Has anyone been given Statins for constipation?

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@stan1357, I see that you have recently joined Mayo Connect and I want to add my Welcome to you. Connect is an online community where patients can meet others with similar health concerns. It is a place where patients can ask questions and support others. I am glad you found Connect. I am a transplant recipient. I am taking immunosuppressant medications and have been fortunate to have mild side effects throughout my 12 years.
I notice that you have some experience with immunosuppressant medications by your comments. I would like to be able to direct you to one of out discussion groups on Mayo Connect where you can meet other patients who have similar health concerns as you.
Your question about statins and constipation is an interesting one. I would like to connect you with others. Are you a transplant patient, or is there another reason that you are inquiring?

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@stan1357

I take tacrolimus and it says take without food

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@stan1357 I'm glad to hear that they are clarifying that. The immunosuppressants that I have been on, first tacrolimus and now sirolimus, have just said "take with or without food" but have not made it clear that you need to be consistent. If you are not consistent it affects the amount of the drug in your system. When I realized this I mentioned to my transplant department that I would prefer to take it without food so I could drop the dosage. They followed me with extra lab work and I was able to drop from 4mg to 2.5mg by taking I without food.

I always figure the least amount of anything that you have to take, the better, but I suppose if less is being absorbed it's a moot point. It could make a big difference though for anyone who has to pay for their immunosuppressants. Mine are all covered by Medicare B.
JK

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@contentandwell

@stan1357 I'm glad to hear that they are clarifying that. The immunosuppressants that I have been on, first tacrolimus and now sirolimus, have just said "take with or without food" but have not made it clear that you need to be consistent. If you are not consistent it affects the amount of the drug in your system. When I realized this I mentioned to my transplant department that I would prefer to take it without food so I could drop the dosage. They followed me with extra lab work and I was able to drop from 4mg to 2.5mg by taking I without food.

I always figure the least amount of anything that you have to take, the better, but I suppose if less is being absorbed it's a moot point. It could make a big difference though for anyone who has to pay for their immunosuppressants. Mine are all covered by Medicare B.
JK

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If your stomach can handle it, it’s definitely better for to take the meds on an empty stomach, for exactly that reason. My Tacrolimus and Mycophenolate have been reduced by 50% in less than a year. My Tac trough is consistently at 5.5-6 which is good.

Morning is easy, I take them at 8:15 and wait at least an hour to eat breakfast. Dinner is harder, especially if you’re going out. I try to eat at 5-5:30, so I’m done by 6 and can leave two hours to metabolize my food.

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@athenalee

If your stomach can handle it, it’s definitely better for to take the meds on an empty stomach, for exactly that reason. My Tacrolimus and Mycophenolate have been reduced by 50% in less than a year. My Tac trough is consistently at 5.5-6 which is good.

Morning is easy, I take them at 8:15 and wait at least an hour to eat breakfast. Dinner is harder, especially if you’re going out. I try to eat at 5-5:30, so I’m done by 6 and can leave two hours to metabolize my food.

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@athenalee That's one thing I like about sirolimus, it's just once a day so I don't need to plan dinner around it, which can get difficult if going out to dinner.

When we are in a different time zone, as in visiting my son in Denver, I wake up early and take my sirolimus and go back to bed. I don't have to worry about food coordination or trying to transition to a different time zone.
JK

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@contentandwell

@athenalee That's one thing I like about sirolimus, it's just once a day so I don't need to plan dinner around it, which can get difficult if going out to dinner.

When we are in a different time zone, as in visiting my son in Denver, I wake up early and take my sirolimus and go back to bed. I don't have to worry about food coordination or trying to transition to a different time zone.
JK

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Yes, that would be nice! At least the Tac pills are small, unlike the Mycophenolate horse pills! So glad I got to reduce those to twice a day.

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@athenalee

If your stomach can handle it, it’s definitely better for to take the meds on an empty stomach, for exactly that reason. My Tacrolimus and Mycophenolate have been reduced by 50% in less than a year. My Tac trough is consistently at 5.5-6 which is good.

Morning is easy, I take them at 8:15 and wait at least an hour to eat breakfast. Dinner is harder, especially if you’re going out. I try to eat at 5-5:30, so I’m done by 6 and can leave two hours to metabolize my food.

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Hi,

What dose of tac are you taking? Also prednisone increases tac levels. My tac target is between 4 and 8 ng /no. I am currently at 8.7 trough and would like to reduce but docs don't want to. My dose is 1mg bd

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