Phase One of changing immunosuppressant meds.

I started on the prograf and the cellcept on Friday evening.  I take both of them twice a day.  They both have to be taken on an empty stomach, so I am trying out 8am and 8pm.

I am still on my full dose of rapamune, but I have already started tapering off of the raptiva.  I skipped the Sunday morning dose of raptiva, but will take it again this coming Sunday.

I have been feeling really tired the last few days.  It is probably a combination of being on both the new and the old drug regime and/or the start up of the new drugs.  I am hoping to feel better soon, either from the weaning of the old drugs, or the acclimation to the new.  I slept most of 12 hours yesterday.  I did make it through the work day, but was dragging.  I was able to teach my class this morning, but plan to take it easy the rest of the day.

Besides the fatigue, I have a queasy stomach and sometimes some aching muscles.  

I had my blood drawn yesterday to measure the drug levels of the rapamune, prograf, and cellcept.  As soon as the prograf and cellcept reach therapeutic levels, I can begin to decrease the rapamune.  I hope to hear later today.

Change in immunosuppressant regime

I have to change the immunosuppressants that I have been taking since my transplant.  I have been taking Raptiva and Rapamune (Sirolimus).  Recently, a few people have died from the Raptiva.  They were taking it for psoriasis, not islet cell transplants, and were on a dose that is  twice what I take.  But, the study doctors have decided to take all of the patients in this protocol off of the raptiva to be safe.  And, they also decided to take us off of the rapamune and start us on two different immunosuppressants.  The two new ones are both tried and true and have proven to be useful in transplants and are easier on the kidneys.  So I guess it should be  ok.  I  am a little disappointed and apprehensive.  I have been doing so well with my current regime.  My glucose numbers have been just great, and I have been lucky with having only minimal side effects from the drugs.  It seems crazy to have to roll the dice from my comfortable vantage point.  But, I really do understand that I have to.  I have not got much sympathy from family or friends with my wanting to stay on the raptiva and just hope for the  best. Anyway, it  is not my decision to make.

So, as of tomorrow, if they come in the mail today, I will  be starting on Cellcept and Prograf (Tacrolimus). Most of the questions people ask me are in regards to the immunosuppression, so I will have the twice the experience and the ability to compare.  I am hoping to be as lucky with the new ones as I was with the old.

Food allergy and antibodies

I had what was probably a mild food allergy reaction last weekend.  We were invited to dinner by some friends and during the course of the meal, I developed a dark discoloration around my mouth.  Gary noticed it after we had had the soup and the salad.  I have since found out the ingredients of both, and the only thing that I might never have had is the dried cherries.  The discoloration was gone by morning and never itched or burned, so it wasn't too worrisome.  I did mention it to Dr. Bellin and she agrees that it is probably a food allergy.  It is not listed as a symptom of  any of my medications. I would think that I would be less inclined to something like this with my lowered immune state.   

On this subject of immunity, I haven't mentioned here before that there is a study connected with the islet transplant study that researches my antibody levels.  When my blood is drawn at my visits  to the  clinic, I also have many other tubes drawn for the antibody study.  They monitor levels of various antibodies and compare the concentrations to see which are rising and which are falling.  They compare these between patients who are having successful transplants and and those who are in the process of rejecting the transplant.  The goal  must be to see which antibodies to target with the next generation of immunosuppressant drugs used for future transplants.  It is all very interesting and I can't say that I fully understand it.  But I am just pleased that I  am yielding all of this data.  

By the way, the food was delicious.  One of our friends has  retired and has been experimenting with some new recipes.  We had sweet potato/squash soup, homemade bread,  fruit and nut salad, stuffed pork and asparagus, and marinated pears for desert. It is fun having retired friends.  I can always find someone to play golf with during the week too!  One of the few benefits  of getting old.

Hypoglycemia unawareness study

I just got back from U. of Minnesota where I was able to participate in a hypoglycemia unawareness study.  The study uses subjects who are participating in an islet cell  transplant study as their subjects.  It is designed to see where the glucose is concentrated in the brain during hyperglycemia.  The test is run both pre- and post-transplant.  I did the pre test last winter and just finished the post-transplant portion this week.  The procedure is as follows:

I was given an infusion of glucose to raise my glucose to about 200 and then placed into an MRI chamber where the glucose could be measured inside my brain.  I had an IV in a foot vein so that my blood could be drawn every 5 minutes to verify the glucose level.  I also had another IV to infuse insulin if it my glucose level became too high.  I was in the MRI chamber for about an hour.

Afterwards, as a second part of the study, I was given enough insulin to get my glucose level down to about 50 to see how my body reacted to this.  Again, my blood was drawn every 5 minutes and it was recorded how much insulin and glucose I was given to maintain this glucose level.

The results will be compared together (Pre and Post-transplant) and with nondiabetic patients.  The idea is to see if a higher concentration of glucose in certain areas of the brain are related to having hypoglycemia unawareness and if so, how could this be treated.  Hypoglycemia unawareness is so potentially dangerous.  It is an important problem to be addressed.  

It was an interesting and rewarding visit.  I also got to meet another potential transplant patient who is just as excited about the whole islet cell experience as I am.  We had a lot in common.

I am including an image of my brain from the pre-transplant visit.  The MRI expert was nice enough to e-mail it  to me.  It doesn't mean a lot to me scientifically, but does prove of its existence to many who would have their doubts.

Day 200

Things are continuing to go well.  I have been getting quite a few questions lately from people who find their way here.  It is encouraging me to keep current with my blog.  It seems to be getting so long that I have been cutting back on my number of posts, just so that it doesn't seem so overwhelming.

The questions are  about 90% asking about the immunosuppressants. That was always my biggest concern too.  It doesn't make sense to trade one problem for  another.  So far, I  have had no serious problems with any of the drugs.  I may just be lucky or I may have landed in a protocol with more mild drugs.

One interesting observation that I have made lately is that I do still get some mild low blood sugars.  I just had one of 59 yesterday.  I would not have guessed that this  would happen.  I wouldn't think that the beta cells would over react like that.  Since it is only mildly uncomfortable and not at all dangerous, it doesn't really bother me.  It almost feels like "money in the bank" meaning that  I know that the cells are continuing to work well.  I still get some blood sugars that are higher than I would like (150-180), and it serves to remind me that I am not all the way normal.  I watch my number of carbs and continue to exercise to keep this from happening too often.