Thursday, May 12, 2016

Anti-Rejection Medications and Their Side Effects

I am a member of the steering committee for the PF Warriors of North Texas pulmonary fibrosis support group.  During today's conference call, several people mentioned that  they wished someone had taken more time explaining the post-transplant medications and their side effects before they underwent the lung transplant procedure.  Sounds like a good subject for a blog post.

I am writing this post from the patient's perspective, and am describing the side effects that I experience.  Each patient is different and may handle these medications differently.  A transplant team works very closely with their patients to minimize the side effects of these life preserving drugs.  Following a lung transplant, a patient will spend a lot of time with the transplant team dialing in the most effective drug cocktail to protect the new lungs with the least amount of side effects.  Working, and communicating with, your transplant team is the best way to ensure that your particular cocktail is the most effective for you.  Oh... one last thing... your meds are pretty much always changing.  The changes are not as drastic, or nearly as often as you progress, but they will change.

My medications:

Prograf - Generic name Tacrolimus.  Prograf is an anti-rejection medication that helps to prevent the immune system rejecting the new lungs.  This is a forever drug for lung transplant patients.

Important things to note about Prograf.  First is that you have to take this medication on a tight schedule, two doses/day, 12 hours apart.  For my team, this is at 9:00 AM and 9:00 PM.  This med should be taken within 15 minutes of the scheduled time.  The transplant team determines the proper dose of Prograf based on how far out a person is from their transplant, and the level of drug in their system.  For my team, labs are drawn 11 hours after the last dose, in other words at 8:00 AM.  Timing is very important.  This is why on Clinic days, you still have to come in for labs at 8:00 even if your appointments to see the team are not until the afternoon.

My side effects include hand tremors, high blood pressure, an increased risk of infection (and when I do get an infection it gets bad quickly), potentially high levels of potassium in my blood, and an increased risk of skin cancer.

Other potential side effects are high blood sugars, nausea or vomiting, headaches, kidney damage, and an increased risk of lymph gland cancer.

I counter the side effects by:
  1. Hand tremors - Basically I just have to understand that they are an effect of the drug and that they come with the territory. Relaxation helps. I recently decreased my dose of Prograf from 1.5 mg twice/day to 1 mg twice/day.  This has really helped with the tremors.
  2. Drug induced hypertension (high blood pressure) - I take Metoprolol and exercise to help control my blood pressure and heart rate.  Currently my evening blood pressure averages around 105/73, and my resting heart rate is 66 BPM (according to Fitbit).
  3. Increased risk of infection - This is the one that takes the most effort.  I wash my hands very often and maintain strict food prep hygiene.   I wear a procedure mask when out in public during cold/flu season or whenever I may be around other sick people.  I try to shop during low traffic times of the day and avoid children.  I also track my vital signs twice/day to help catch early signs of infection.
  4. Blood potassium levels - I have to keep an eye on potassium intake.  I log my food and keep my potassium at about 2/3rds of RDA.
  5. Increased risk of skin cancer - I visit with a Dermatologist once every 6 months.  She has found, and removed, precancerous spots each time.  I have to limit my sun time, wear a floppy hat, and wear sunscreen.  I have increased my sunscreen to SPF 50.  My Dermatologist has recommended that I take Niacinamide, 500 mg, twice/day.
  6. The transplant team monitors for indications of long term kidney and heart damage.
CellCept - Generic name Mycophenolate Mofetil. CellCept is another anti-rejection drug that is used to suppress the immune system and prevent rejection of the new lungs.

The prescribing information recommends that CellCept be taken on an empty stomach.  The transplant team pharmacist told me that the important habit to get into concerning CellCept is to take it the same every day, to make a routine of taking it with, or without food.  I take my morning dose at around the same time I eat breakfast every day, 9:00.  I try to ensure that I eat dinner by 7:30 each night so my evening dose at 9:00 is taken on an empty stomach.  This has worked well for me so long as I keep this schedule.  Changing the schedule will have an effect on how much the CellCept suppresses your immune system.

A major side effect of CellCept is muscle weakness, it is also a side effect of other medications that I take daily so I am not sure which one caused my initial weakness.  CellCept also comes with an increased risk of infection and an increased risk of various cancers.

Other potential side effects include loss of appetite, stomach issues, skin rash, fever/sore throat, swelling, and frequent or bloody urination.

I counter these side effects pretty much the same as I do with Prograf.

Prednisone - Asteroid used to suppress the immune system and as an anti-inflammatory.  This is probably the medication that most people recognize as it is used for so many issues. My maintenance dose is 15 mg/day.

Side effects, yes there are side effects. My side effects include insomnia, an increased risk of infections, blurred vision, easier bruising, bone and joint deterioration, muscle wasting and weakness, slow wound healing, and increased sun sensitivity.

Other side effects include sodium/water retention, increases appetite, fat deposits in face/belly/neck, stomach issues, ulcers, mood swings, increased blood sugar levels, and acne.

I counter these side effects with -
  1. Diet and exercise.  I have come to the conclusion that diet and exercise are the best ways to counter many of the side effects of having to take Prednisone. I have eliminated grains and processed sugars and most processed foods from my diet.  This has eliminated the carb cravings, weight gain, and water retention that many report with Prednisone use.
  2. Muscle and bone loss - I take calcium and vitamin D supplements daily.  I also eat homemade bone broth most days and exercise at least 5 times/week.  Eating healthy fats and high quality fruits, vegetables and proteins helps with my overall health and with maintaining my muscle strength.  I wrote an earlier post on Post-Transplant Bone Density that has more information on my n-1 experiment on improving bone density while on anti-rejection drugs.
  3. Insomnia - Haven't found much in the way of help for this issue.  I still do not get enough sleep.
  4. A large part of the annual post-transplant testing is performed to check on the long term effects of Prednisone and the other anti-rejection medications. 
Bactrim - Generic Sulfamethoxazole and Trimethoprim.  Bactrim is an antibiotic used to prevent a specific type of pneumonia common to lung transplant patients.

There is a very long list of potential side effects related to Bactrim use.  My transplant team is mainly worried about kidney dysfunction, bleeding, and GI disturbances.

I talk about how I counter the side effects of antibiotics in my post "Pre, Pro, and Anti -Biotics".   Basically I eat a wide variety of fermented foods and cultured milks to try and maintain my gut biome.

Valcyte - Generic Valganciclovir Hydrochloride.  Another antibiotic.

My new lungs came with a virus that I had not previously been exposed to,cytomegalovirus (CMV). CMV is very common.  I understand that nearly 70% of Americans have had CMV at one time or another.  The symptoms are usually benign, but once infected the virus stay active.  A CMV infection is a very big deal for a lung transplant patient.  With CMV positive lungs, I am considered a CMV mismatch.  The initial protocol for CMV mismatch patients is very aggressive and if anyone is interested I'll write another post on that topic.  Valganciclovir is doing the job and keeping the CMV at bay.

Valcyte comes with its own long list of side effects and I counter those effects the same as any other antibiotic.

That is the list of medications that help keep me from infection and my lungs from being rejected by my immune system.  Now comes the list of medications and supplements necessary to counter the negative effects of these very important drugs.

Mycelex Troche - Generic Clotrimazone.  This is used to prevent Thrush.  Thrush can occur due to the steroid use.

Metoprolol - Counter drug induced hypertension.

Pravastatin - Used to maintain good cholesterol levels and comes with its own list of side effects.  I have great cholesterol numbers and my team and I are in disagreement on the necessity of this med, but I do take it as I agreed to do as they recommend prior to being listed.

Protonix - Generic Pantoprazole Sodium, a Proton Pump Inhibitor. In my case, Protonix is prescribed as a prophylactic to help prevent GERD, Acid Reflux and micro aspirations of stomach acid.  This is to protect my new lungs from stomach acid and also comes with a list of nice side effects.

Ambien Generic Zolpidem Tartrate.  This is to treat insomnia.

Flomax - Generic Tamsulosin HCL. Used to help ensure good urine flow and complete bladder emptying.  This is to help prevent future urinary tract infections.

I also take Zyrtec and Ipratropium Bromide to help with seasonal allergies and prevent post-nasal drip.

Added to this list are the supplements that are prescribed, recommended or approved by my team.  Most on this list are to counter effects of the drugs, a couple are for general health.

A multivitamin


Citrical + D

Vitamin C

Coenzyme Q10

Vitamin K


Vitamin D 1000

I am also Hypothyroid, so Synthroid is also on this list.

As you can see, we lung transplant patients take a lot of pills, that have a lot of side effects.  Diet, exercise, supplements and medications to counter the side effects really do help.  The transplant teams monitor our kidney and liver function, keep a very close eye on our immune systems, and send us to more exams the many people get in a lifetime to identify early signs of organ and bone degeneration.

All of these side effects, the effort to sort and take all these drugs, and even the expense are nothing compared to the Hypoxia associated with restrictive lung diseases.

I can breathe.  I can walk as far, and for as long, as I want to.  I am no longer tied to a plastic tube with 10 lpm of oxygen being shoved up my nose.

I am happy and healthier than I have been in years thanks to my donor family, my new lungs, and these life preserving medications.

We can deal with the side effects. Our new lungs are worth the effort.

Do you have any other ways of countering the effects of your transplant medications?  Let us know in the comments.

Side effect update: I recently attended a medical conference at Stanford called MedicineX.  #MedX was a very intense four days of total immersion in empowering patients and revolutionizing health care world wide.  As the weekend went on, a couple of my side effects increased dramatically.  My hand tremors and a bit of mental fog I experience became much more pronounced.  The mental fog is kind of like a film between me and what's around me.  After my last trip to the ICU, they had to take me off the anti-rejection meds for awhile.  Even though I was sick and exhausted, the world was much brighter and I felt pretty great. As the meds were reintroduced, the film came back up.

At MedX, they provided a "Wellness Room".  A quiet room with drinks, snacks, comfortable seating and a water feature.  I retreated to the Wellness Room and performed some 8 second box breathing for a bit and that really helped calm down the tremors and clear up the fog.


  1. I agree! The drug regimen and most side effects are a mere nuisance in comparison to our pre-transplant state. And many of the side effects are treatable as opposed to our lung disease.

    1. Being able to hop in the car and go to the store without having to bring along a few oxygen cylinders is pretty awesome.

  2. John, University Health Network (Toronto General Hospital) has some really great resources online re transplant starting with the Patient Toolbox (

    Following the Managing Your Medications link, you find a link for the Transplant Medication Information Teaching Tool but can reach it directly with this link

    I think that some people hear what they want to hear. I wanted to hear all the good and the bad as they helped me make an informed decision.

    I usually recommend to people, remember Toronto pioneered the successful lung transplant, that they read the Lung Transplant Patient Manual ( before their assessment.

    They also provide a shorter version for families

    I treat it like college and reading the lecture material before attending the lecture so you're not busy trying to write down or remember information that is already contained in your reading material and can concentrate on new information and information that is stressed. It also helps you to make a list of questions for things you either still don't understand or weren't covered.

    The assessment time is a very stressful and busy time as we know with a great deal of information to be absorbed. TGH includes an education model. My consent form signing with the surgeon next month will be another opportunity for me to get the details and fully understand what I'm signing onto.

    So when I do, I will have made the best and most informed decision I could for myself without the existence of a crystal ball -- eyes wide open without rosy glasses.

    Anyone who would like a copy of the UHN links, just drop me a note at

    1. Those are some great resources Barbara. The transplant team pharmacist held a class for new listies before we were listed, and then spent about 3 hours with us in the hospital going over all the meds before we were able to go home. These medications keep us alive and the team at UTSW does a great job of ensuring that we understand our meds.

  3. You do such a good job of providing a comprehensive list to show people like me what your day(s) are like as far as medicating yourself. My goodness it seems overwhelming.

    I'm so happy you found MDA and post there and here.

    1. Thanks. It is a lot of meds/supplements. One of these days I should weigh my daily meds just for giggles :)

  4. Great knowledge, do anyone mind merely reference back to it