Friday, September 14, 2012

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.


Scott K. Johnson said...

Hey Kathy!

Hope this change helps move things closer to where you need them to be.

Thanks for the update!

et63 said...

Sorry to hear about this set-back. I continue to hope and pray they move the research for the cure along. I hope that the new med helps to ease, aleviate some of the kidney issues. I know about the worry aspect, it is hard for us not to at times. You have done SO much to push the progress forward and I thank you for that. I am curious is you had any thoughts on the immunotherapy prior to you undergoing the transplant? Or, were you in a place where it was worth the risk? Just a curiosity question, as I have been asked what made me do what I did. Be Well and thanks for the updates.

Karen said...

How frustrating and scary this must be for you. I'm hoping things will go really well with the new combo. And I want to thank you for being the trail-blazer that you are. Because I know the doctors are learning such important things from you.

Kathy said...

Thanks for the nice thoughts and well wishes. It really does help my state of mind and I do believe in positive thinking!

I was aware of the risks of immunosuppression before the transplant, but not extremely worried. I expected to deal with what ever came up. And thats still basically what I'm doing. My doctors make these important decisions and I feel that I am in good hands. They are concerned both with my health and with the research.

I'm mostly worried about my islets at this point. I know that this transition is stressful for them. All that I can really do is wait and see what happens and hope for the best. And as both Eliza and Karen pointed out, I'm part of a research project. I do take that very seriously and feel good about my part in it. For now, I'm concerned, but still feel very lucky to be where I am.