Recent Prograf level in the 3's

[kellyt]

My last lab done on Jan 18th showed my Prograf to be in the 7's.  What would cause the drastic drop?  I now have to go to 3/2 starting tomorrow, with a redraw next week.

This darn nurse!            She asked me "What time did you take your Prograf the night before your draw?"   "9 p.m." I said.  Well, they did this draw at 8:25 a.m., so you weren't at the 12 hr mark.  You should have had it drawn at   9 a.m.".  "What are you talking about?"   I asked.  "I take my meds at 9a and 9p and for the ENTIRE year since my transplant I was told to take my labs before I take my 9 a.m. dose....PERIOD.  The lab opens at 8 a.m. and I get there at that time so I'm close to the top of the list.  I go back when they call me and it's always between 8a and 9a and I've NEVER been in the 3's."    SHE IS A BLOOMING IDIOT!     

While I was still going to the transplant clinic I was taking my meds at 6a and 6p and my instructions at that time were to hold my night dose the night before labs and take it around 8:30 p.m. and get to the clinic at 8 a.m.  There they would always draw me by 9 a.m. (sometimes at  9 a.m.) and then I would take my meds.  I have never been this low.  The draw time has nothing to do with it in this case.  WHY IS SHE STILL THERE?        

[jbeany]

Oh, that one's a gem!

Mine insisted that I had to have skipped a dose when I got labs done after being home for two weeks.  Ummm, no.  I have alarms set on my phone, my clock radio, and my wrist watch.  My house sounds like a fire drill twice a day.  I didn't skip anything.  Gee, do you think it might just possibly be related to the fact that the first two weeks home were the first two weeks I'd been allowed solid food since the transplant?  Duh!  So the doc upped the dose, and it was fine for two months.  Then it was high last time, although just barely.  Well, yeah, I had a bout of gastroparesis.  I puked everything up and went to an all liquid diet for the day before the blood test, because nothing else would stay down.  And again, that changes the absorption rate.   

[kellyt]

That's crazy.  I want so badly to say something to the doctor, but then I don't want to be known as that patient who complains and gets people in trouble or terminated.  I kind of felt like I got that rep at the transplant clinic after I complained and two nurses were let go (not sure if it was because of me or if I was just the straw that broke the camel's back).  Anyway, I think I'll just stand my ground with her and insist she confirm everything through the doctor.  I'll just ignor her personal comments about what she thinks I should do or whatever.  I know what I should do and what my labs should be, so I'll just "smile and wave".   

[paris]

I am in a mood to hit something!  Give me the nurses address!!              What a stupid (my grands say not to say stupid) nurse!       Fortunately, she is one in a million and there aren't too many like her!   

[tawniepixie]

idiot nurses are the worst.

[Romona]

I dose once a day and my level flucuates from 3-8. I have cylex and elisa testing every three months. They adjust my dose by the results of those tests. I have been lucky to have had two great coordinators. I wish everyone could have good nurses.

[jennyc]

I'm sitting around 7-8 for tac levels (prograf) i take it at 10 and 10 but we do bloods between 7.30 and 8.30 depending on what time i get there i'm still on 5mg though.

[kellyt]

I'm sitting around 7-8 for tac levels (prograf) i take it at 10 and 10 but we do bloods between 7.30 and 8.30 depending on what time i get there i'm still on 5mg though.

My doctor would be happy with that level, but I don't feel right at anything over 6.  I feel hot, like a sunburn, but not hot to the touch.  Like I'm emitting heat through my eyes and skin.  I'm feeling that way now and it' because they increased me to 3/2 from 2/2.  I can't wait for my recent level results.

[Romona]

I thought I was the only one that could feel a level that was too high for me. I get more tremors and just feel crappy when mine is around 8. Since I only take it once a day the levels are acceptable in 4-5 range.

[Wenchie58]

Three weeks ago during a little dance I was doing with CMV my tac level got up to 16....talk about the quivers!  My knees were shaking so bad at times that I would lose balance.  They caught it and cut my dosage in half 2.5/2.5, now my level is around 6...the lowest it's ever been.  Still don't think I could thread a needle though!   

[kellyt]

I'm having a lot of aches and pains, too.  My hips hurt when I get up from sitting, especially when I'm getting out of the car, my shoulders ache and, of course, my feet.  I have to wonder if it is related to meds and, if so, which ones?

And Wenchie, if you can't thread a needle it's probably not because of your Prograf!         Just joshen, my Friend!!!   

[Romona]

Oh my goodness Kelly. I complain about the same things. My hips would kill me after getting out of the car. Especially after about a half hour ride. My feet, everything you mentioned. I thought maybe it was related to my PTH. It is finally at the normal level so it isn't as bad. If my phosphorus is low I ache like crazy. Now they are trying to get my inactive vitamin D levels up. They think I'll feel better after that.

Wenchie I bet the level that high was weird feeling.

[kellyt]

I'm going to call the doctor tomorrow and check what my last PTH level was.  My labs were done two weeks ago.  You say you had these aches and pains when it was too low?  Thanks.   I hope this is an answer.

[jennyc]

they will eventually put me down but since i've had rejection already they want to keep me high for a bit. i get really hot as well, i have to have the aircon set really cold and i'm on the lounge so i can turn off the bedrooms as night so hubby and son don't get the cold air and get sick. It's the only way i can sleep.

[Romona]

Kelly, my PTH was high. Not as high as it is for someone on dialysis but it was over 100. My calcium was high a few times and high normal. Once my PTH was brought down to the 60 range I felt better. Prograf can cause too much phosphorous to be lost. If my phosphprous is even a little low, I ache. They told me to up dairy and have a diet cola once a day. Most of the high phosporous food are high in calories except low fat dairy. What are your phosporous levels like? There is a ratio I think it is phosphorous should be 1/4 of calcium. So if calcium is a little high like 10 then phosphrous should be around 2.5. Low phosphorous causes muscle and bone pain. Phosphorous and calcium need to balance. I have my labs faxed to me so I noticed patterns in my pain.

[kellyt]

Thanks Ramona.  I'm going to find out, cause I ache like I've been in a car accident.  Just sore, sore, sore.

[Romona]

My endocrinologist told me that if I can get the level in the middle range for phosphorous I would feel better over all. Also magnesium levels are low on prograf. Ask what that level was too. At transplant clinic they told me about getting phosphorous up too. When I am really sore I take Tylenol Arthritis. I bought it by mistake but my nephrologist gave his blessing for it and it works better for me than regular. He also gave me Tylenol with codiene. I only use that if it is really bad so I can sleep.