CHRONIC POSITIVITY – Life with Polycystic Kidney Disease

As many of you transplantees may already know, CellCept is now available in generic, and Prograf has lost patent protection (although I’m not aware of any generic versions yet; correct me if I’m wrong).

I discussed this with my transplant surgeon at my last appointment (BEFORE I found out I had BK virus and was taken off CellCept). He said he preferred me to take brand CellCept, but that if my insurance didn’t cover it, I’d have to take generic.  I pressed him as to whether there is an appreciable difference between brand and generic, and he eventually said “no”, but that he preferred I’d take the brand.  (huh?)

I discussed this with a pharmacist I work with, and he explained that in some drugs, if there’s a narrow therapuetic index (the difference between therapuetic and toxic), then it may be an issue, but with CellCept, it shouldn’t be an issue.  (I hope I got that right)

Anyway, I had read somewhere on an internet forum that there may be up to 15% variability between brand and generic as allowed by the FDA, but this is apparently FALSE. Given that there is only a low single digit difference between the 2, it’s not a concern, especially as there are OTHER factors with absorption, such as interference from foods and minerals. In other words, your drug levels will be pretty close each time you take a med, but never exactly the same.

I plan on taking generic when I’m back on CellCept.  My rationale:

• My insurance has a “lifetime limit” of drug coverage. By taking the lower priced med, I will reach that later rather than sooner
• I have periodic ICF’s (Immune Cell Function) done; this should pick up on any problems

For those who will stay on brand CellCept, here is a link to some help with co-pays (unless you are on Medicare or Medicaid):  click on “Click here for details” at the CellCept for Living website.

For those on Prograf, check out the Prograf Value Card program.

Thoughts on this?

I received a call from the Transplant Nurse on my way in to work today.  She called to give me the results of my blood work from Monday regarding the BK virus.

On the surface, the results don’t look good-I have BK virus in my blood. However, I expected that, being that there was over 39 MILLION copies of BK in my urine.

But it was actually good news: there are only 7600 copies of the virus in my blood, and the only treatment is that which I’m already doing-stopping the CellCept.  No need to treat with Cipro or Leflunomide; they are just going to monitor my blood monthly for the number of copies of the virus, and once my blood is clear, they will monitor my urine.  When the urine is clear of the virus, I’ll go back on CellCept.

When they didn’t screen for this, BK killed off a lot of transplanted kidneys.  I’m very fortunate to have been screened, as this will prolong the life of my “new” kidney.

Of course, the week wouldn’t be complete without ANOTHER problem popping up; this time, unrelated to my kidney.

On Tuesday morning, I was awakened at 4:30 out of a sound sleep with pain in my lower leg near my ankle. I’ve had a similar pain in the opposite ankle before, and given the problems I have with the Charcot Marie Tooth disease, I passed it off to a musculo-skeletal pain, assuming it was probably tendonitis (I’m a nurse, not a doctor).  I went to work, and the pain increased. When I took off my orthotic (splint) and sock, the area of pain was BURNING like mad, and was red.  At that point, I thought it might be the start of Shingles, given the quality of the pain, the redness, and the fact that I’m immunocompromised.

Working in the same clinic as my primary doctor has it’s advantages (which I do not abuse), and I got an appointment right away. My self-diagnosis was wrong, and it turns out I have phlebitis (an inflammation of the vein). My theory is that the strap on my orthotic was too tight, along with the fact that I do some intense walking over lunchtime, which caused the phlebitis.

It’s still flared up. When I stand or walk for over 10 minutes, the pain returns. In fact, standing in line 20 minutes today waiting for my picture license was a killer, but I elevated it once I got to work, and it was better.  It worsens then when I’m driving, since it’s putting strain on the vein.  Elevating it for about 30 minutes calms it down, so I’ve been limiting walking.

The problem with medication is that the traditional treatment, Naproxen or other NSAIDS, is a big no-no with having the transplant, as these drugs are notorious for damaging kidneys.  So I’ve gotten by with Tylenol Arthritis (great drug; even better than Extra Strength Tylenol), and an occasional Percocet (3 in the past 2 days).

I’ll be sure to post an update with my labs in a few weeks, and will probably have a kidney-related post as well.

The Transplant Coordinator called me today with the results of my urine test for BK virus from last week; I have greater than 39 million copies of the virus in my urine. (they only test up to 39 million, so I don’t know the actual number; whatever it is, it’s a lot).  Anyway, I drew blood today (I still have my fistula and still draw my own blood from it) to check if it’s in the bloodstream (it most likely is).

The plan for now is to totally stop my CellCept, and continue on my current Prograf dose of 3mg in the am and 2 mg in the pm (my Prograf level last week was 7.9, and the desired range is 6-8). Depending on the blood result, I will probably be put on a 10 day course of Cipro, which inhibits the virus.  Hopefully, going off the CellCept will once again allow my immune system enough “power” to prevent further replication of the BK virii (I think that’s plural for virus), and once it is not detected, to go back on CellCept.  There will be a monthly urine indefinitely to monitor the level of BK in my urine, along with my monthly routine lab work to monitor my Prograf level, blood count, and kidney function (Basic Metabolic Panel).

I’m still not worried.  The advantage I have is that I’ve been monitored for BK  since my transplant, and 3 months ago it was negative, so it hasn’t apparently had time to do any major damage, as my creatinine is still 1.2, which is where it has been since getting the new kidney.

I’ll have the results of today’s blood work by early next week, and will post again when I find anything out.

I had my quarterly visit to the Transplant Surgeon on Monday, and everything at the visit was good. My creatinine is 1.2, hemoglobin is stable, and blood sugar normal (sometimes Prograf can cause elevated blood sugars).

However, I received a call today from the Transplant Nurse, and my urine tested positive for BK virus.

For those unfamiliar with this, BK virus is present in 80% of humans, but remains “latent” due to the immune system keeping it at bay. In those like me who are immunosuppressed, BK can “reactivate”. The problem is that BK can cause damage to the kidney.

So, I just gave a urine sample which will be a quantitative test for BK (they will count the amount of the virus present in my urine). If the number is over 2,000,000, they will then check to see if it’s in my blood. The treatment is usually to decrease the CellCept dose. However, since mine was just decreased from 2 capsule every 12 hours to 1 capsule every 12 hours, they may stop mine for now, and I’ll just be on Prograf.

My guess is that when I was over-immunosuppressed this past spring (my immune cell function was in the 70′s, which is very low, and an indicator of over-suppression), and that is how it reactivated; my last immune cell function was in the 200′s, which is where they want it. It is what it is, and I’ll just deal with what I have to. However, I’m not too worried, as I’ve talked to patients who this happened to, and they did fine.