It’s All About the Drugs

Kidney transplants today are basically possible because of the immune suppression medications on the market.  I thought I would write about the medications I am on, how I am feeling on them, and a bit about what they cost (which is not the same as what I pay).  I do want to get back to the topic of the other day and want to thank everyone for the great comments but will do that later in the week.

In one of my earlier posts, I wrote about the three things the team uses to match a kidney to a recipient.  The first is blood type, A, B, AB, or O.  Next is Human Leukocyte Antigens (HLA).  There are six of these and you get 3 from each parent.  Last are the donor specific antibodies, as measured by a PRA (Panel Reactive Antibody) score.  I am lucky in that my blood type is AB, the universal acceptor, so I can accept any blood type.  I am unlucky in that I had a high PRA score with a lot of antibodies because of the pregnancy and all the blood products I received after I delivered.  I was a one match/five HLA mismatch with Sarah.  Not ideal, however; immunosuppressant medications are so good these days that the difference in the life of a kidney between a 5 match/1 mismatch and a 0 match/6 mismatch is only a matter of months.  If you are lucky enough to find a perfect 6/6 match, the body reacts like the kidney is its own and that is the best situation.

So now the medications.  I currently take more than 20 pills a day and am on three different immunosuppressants.  The idea being that you can have lower doses of each and minimize side effects because of the three.  First is prednisone.  This is a life saving medication with terrible side effects.  I am currently on 20 mg, which is a moderate dose, and will hopefully be able to wean down to 5 mg, which I will be on for the rest of my life.  This medication is essentially the same as a substance made in the body by the adrenal gland so everyone has a little of this around, and it is used to treat many many diseases and illnesses such as asthma, autoimmune diseases and adrenal insufficiency.  It also causes glucose intolerance, high blood pressure, heart failure, cataracts, glaucoma, insomnia, mood swings, can make you psychotic, and bone degeneration among many other things.  I already have developed the round face that goes with prednisone use and I am shaky.  Prednisone is also generic and cheap – about $12/month at

The next two immunosuppressants are not so cheap.  Prograf (tacrolimus) is thought to suppress T-cells.  I take 9 tablets a day, 270 tabs/month at a retail cost of about $1000/month.  Side effects here are too long to name but I think the main thing they look for is diarrhea and photosensitivity.  I think this is giving me aesthesia, a burning sensation in my fingers and toes, as well as insomnia and maybe the shakiness.  The Myfortic (mycophenolic acid) inhibits T and B cells ($865/month).  Also causes GI upset and a list too long to name. Both of these drugs will significantly increase my risk for skin cancers and I need to be very careful of the sun for the rest of my life.

In addition to the immunosuppressant meds, I am on an antiviral medication, Valcyte ($1250/month) to prevent viral infections, Nexium, to prevent ulcers from the prednisone ($172/month) and have to do a monthly inhaled pentamidine treatment to prevent a lung infection called PCP that immunosuppressed people get.

So grand total (retail) is about $3300/month.  Thanks to my really good health insurance, I hit my “out of pocket maximum” about January 5 so I pay nothing, at least until 2011.

I am also getting 4 doses post transplant of Eculizumab, an iv infusion of a monoclonal antibody (think designer drug) that stops the complement system.  It is currently approved only for a rare condition called paroxysmal nocturnal hemoglobinuria.  It is being used more and more off label for complement-related conditions such as the HUS I had.  Eculizumab has the distinction of being the most expensive drug on the market.  Based on my current dosing level, it is about $10,000 PER DOSE.

The policy implications of this are interesting.  In a future column I will talk about Medicare coverage of ESRD and kidney transplants.  Problems arise when people who have had a transplant lose their health insurance and then cannot pay for their meds.  They then lose their transplant and end up back in a safety net situation, either on dialysis if they have a kidney or terminally ill with a heart, lung or liver.  In addition, pharmaceutical companies are both the darlings and villains of the health care system.  On the one hand they are making these amazing life-saving drugs that make possible advances in technology barely even dreamed of 20 years ago.  On the other hand, these investor-owned companies are making record profits each year.  Genentech, which makes Valcyte, is now owned by Roche pharmaceuticals.  In 2009 their operating profit margin was 34.6%! Compare this to a health insurance company, which targets a 5-7% margin.  How much is too much?

More good news today about Brutus – creatinine was down to 1.20!! Red blood count was up to 29.  I also got the sutures out which feels SO much better.  Staples will come out on Thursday.  Go Brutus! Sarah is in town to pick up her pups.  We are going to have a great Thai food dinner and watch a movie.  Thank you thank you thank you to all those who have been helping with babysitting over the past few weeks!


5 thoughts on “It’s All About the Drugs

  1. wow lisa!! so fascinating! i’m in awe of you — your presence of mind and sense of humor through all of this. when i think i’ve had a rough day with my (albeit exhausting) life, i think of you and shut my mouth!!

  2. Great post!!!

  3. Lisa: Thank you for taking the time to give us the details. Certainly, the fact that Brutus is doing well and thereby, you are doing well is the most important issue. However, your blog is so important for all of us ‘medical consumers’…particularly those who may be looking at a kidney transplant, those who have had one and those who have donated a kidney. You are in my thoughts every day and I love to see the photos of the kids…..they look like they are thriving.
    Love you XOXO Joanne

  4. Dear Lisa,

    It is so amazing to read Sarah’s and your stories.

    In 1973 I was diagnosed with ITP and was put on 60 mg of prednisone a day and I can relate to the puffy face and the shaking. I have not needed to go back on prednisone for many years. Hopefully you will get down to 5 mg for good.

    Thinking of you and hoping all your test results will be good. Can hardly believe the twins will 1 very soon.

    Our very best wishes to you,

    Mitzi and Terry

    Mitzi and Terry Kane

    Mitzi and Terry Kane

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