Drug Transition Update 2012

I've been taking my new drug, Myfortic, for a week now and am beginning to tapir off the Rapamune. I'll be done with the Rapamune in a week.

I had my drug levels and monthly labs drawn on Monday.  The drug levels were all fine, but my creatinine has increased to 2.0.  Last month it was 1.7 and considered too high, so this is not good.  Dr. Bellin put me on a quick decrease of the Rapamune in hopes that this will help my kidneys and if not, I'll have to decrease the Progaf dosage as well.

To complicate (or help) matters, I started on an insulin pump this week.  My endo has wanted me to do this for awhile, but I never thought I took enough insulin to make it worth it.  I was ranging from 12-15units/day.  But, it seems to be the only route to my getting a continuous glucose monitor.  And, it will help to keep my blood sugars under the best control during this transition, so I relented.  I was hooked up on Tuesday.  After some really high (375!) numbers on that first day, I seem to be settling down.  I can't say that I am enjoying it it all.  Its physically such a bother and emotionally and symbolically feels like such a giant step backwards.  Only hindsight will tell if this was good timing or bad.

Things feel a little precarious now. I know that this drug transition is stressful to my islets, so I'm watching my BGs closely and being as aggressive as I can with the insulin to help them as much as possible.  That's all that I can really do.  I can't do much for my creatinine level.  Fortunately, no side effects from either the high creatinine or the Myfortic.  I still feel good.  I'm just trying to stay busy and hope for the best.

Senator has been a nice combo tool/ security blanket for me.  He can warn me if I am going high and patiently accepts all the hugs I can give him.

Changing Immunosuppressants again

Its been decided that its time to change my immunosuppressive drugs again.  My lab results have been indicating that my kidneys are becoming stressed by my current immunosuppressive regimen.  My creatinine is up to 1.8 and seems to be higher with each reading.

I could see this coming for awhile, but its still somewhat of a shock.  Other than worrying over lab results, I'm really not experiencing any symptoms.

To review, this will be my third switch.  I began with Rapamune and Raptiva.  Raptiva is the name of the clinical trial that I am participating in and was a new drug being tested for islet cell transplant recipients.  In hindsight, it was wonderful.  I took one injection once a week.  No pills at all.  And no side effects either.  Then, after about 9 months, Raptiva was taken off the market.  It was also used for psoriasis patients and some of those patients were having problems with it.  They were experiencing a certain type of brain infection and there were a few deaths.  It was decided to discontinue its use in the islet cell recipients at that point.

So, I was switched to Prograf and Cellcept.  Everything was fine for awhile.  My islets seemed to work well with this combo and everything seemed to be going smoothly.  Then, I started having some digestive issues.  I treated and fought with them for about 9 months, but ended up with colitis.  It seemed to be progressing from bad to worse, so it was decided to take me off of the Cellcept.

I switched from Cellcept back to Rapamune.  I've been on this Prograf/Rapamune combination for two years now.  Its been uneventful for the most part.  Very minimal and temporary symptoms.  But, my blood sugars increased which is when I began to need some insulin again.  And then the kidney function tests began to show signs of kidney stress.  It seems that every time I've been drawn lately, its triggered calls from my doctors.  I see a nephrologist who seems the least worried, but she seems comfortable with the words "dialysis" and "kidney transplant".

And now I'm switching the Rapamune for Myfortic.  Myfortic is similar to Cellcept, but is coated to help protect the digestive tract.  I'm hoping that I won't have those problems again.  I think I've reached the end of the road for tolerable immunosuppressive drugs.  I'm worried about how my islets will tolerate this change, but am hoping for the best.  I'm on day 3 of the new regimen now.  I'll be drawn next week to see if I'm in the therapeutic range for Myfortic and if so, will begin to decrease the Rapamune.