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Author Topic: High prograf level??  (Read 23733 times)
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refurb
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« on: July 29, 2009, 10:36:17 AM PDT »

My transplant is almost 10 years old and i just found out while recently in the hospital that my prograf level is very high. They retested and it's still high...so doc cut my dose in half.

Anyone have any experience with this situation??

Refurb

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Lupus/ CKD 25 years
Transplanted 12/15/99
jules17
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« Reply #1 on: July 29, 2009, 11:58:28 AM PDT »

Hi Refurb:  Whereas I don't have any experience with my prograf levels being high, I do know that prograf is nephrotoxic, and it is very important that your prograf levels be monitored.  Too much prograf can cause rejection of the organ.  I don't mean to be scaring you, but it is important that your doc helps you get that undercontol before it causes some damage to the transplant.  Good luck.

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nursepilot
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« Reply #2 on: July 29, 2009, 12:19:03 PM PDT »

Hi,
What level were you running prior; what level were you at recently that is was high & then what level are you at now that your dose has been cut in half? 
What other meds are you taking with the Prograf?  There could be some cummulative effects going on here, with other drugs causing your Prograf level to run high.  Are you on anything that has been newly added (especially anti-fungals, etc!!). Do you take it with grapefruit juice?

If your levels run too high, you can run into things like neurotoxicity (shaking, hand tremors, etc), risk of lymphomas & cancers.  With too low levels, you can run into issues with rejection. 

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refurb
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« Reply #3 on: July 30, 2009, 06:21:11 AM PDT »

Thank you both so much for your thoughts Smiley  My prograf level runs about 7.5 for as long as I can remember. Now it is a 12. For the last 9yrs I have been on 2mg AM and 2mg PM. She just cut it in half with 1mg AM and 1mg PM.

I have been in the hospital on and off for about 2 weeks. I was on levquin and promaxim (sp?) IV while in the hospital and left the hospital with cipro oral which i just finished this morning. Doc first thought the level was high because in the hospital of course they are taking blood morning, noon and night so I was not fasting like I normally do when I go to my outpatient lab at 6AM. I went to the lab last Friday to have it re-checked and it was still high. She just sent me to the lab this morning---so we will see.

Defintiely no grapfruit or pomegranite juice (just found out that is a no no as well).

I'm on the usual meds for transplant and I have Lupus too--no drugs out of the ordinary. I do know Prograf can be nephrotoxic so this is making me nervous.

Maybe all the IV antibiotics in the hospital--could that raise my prograf level?
Refurb

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Transplanted 12/15/99
jules17
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« Reply #4 on: July 30, 2009, 02:11:29 PM PDT »

Hope you will be feeling better soon Refurb.  I'll be thinking about you.

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nursepilot
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« Reply #5 on: July 31, 2009, 10:04:04 AM PDT »

Was your recent hospitalization in a transplant hospital, or a community/rural one?  It can make a difference as the transplant center hospitals are tuned into specific meds & the needs of transplant patients.  I've seen issues where transplant patients are at community hospitals & one has to be careful.  They're perfectly fine hospitals, but the staff is not "programmed" for transplant patients.  So, nurses (not used to having transplants) may not catch drugs that have been ordered that may interact with your regime.  Specialists called in may order something that may interact with drugs that you're on, etc.  The pharmacy should pick up on interactions, but may not.  Without seeing the list of antibiotics that you were given, it's hard to tell.  It sounds like it had to have been something, for as far out as you are from transplant to have levels jump is a little odd.  The good thing is that your MD is monitoring it!  You want to make sure to keep an eye on it, as you are!  You're doing well.  And 12 is not too bad of a jump in the scheme of things, but it's double for you.  I've seen levels steady, but then jump to 20-25-ish.  Those are generally tracked to anti-fungals.   Keep us posted here!!  Have a great weekend.

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refurb
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« Reply #6 on: August 06, 2009, 03:29:58 PM PDT »

Thanks much Nursepilot---well i think it was the cipro. I have been on cipro many times before but this time I experienced some side effects. I had terrible calf and foot pain--thought it was my Lupus but in fact it was the cipro and also my tongue was super sore--weird i know but i also read that cipro can do this. I'm happy to say my nurse called today and said the level is now down to a 8.2...whether it's being off the cipro OR cutting the prograf level in half --who knows. After next months labs doc will decide if i need to stay on the smaller dose.
thanks again....

Refurb

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Scuba Girl
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« Reply #7 on: August 06, 2009, 06:37:00 PM PDT »

I am now 8 1/2 years tx and I am now only taking 1 1/2 morning and 1 1/2 evening to keep my Prograf level between 7 and 8.5.  My Prograf was lowered a couple of times to get to this point.  I can also tell if I am a little dehydrated that my level is higher.

I have always been told no grapefruit but no one has ever mentioned pomegranate juice? 
« Last Edit: August 07, 2009, 10:12:43 AM PDT by Scuba Girl »

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BJ275
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« Reply #8 on: June 24, 2010, 06:28:34 PM PDT »

I had a transplant in May and they did mention grapefruit, juice and Fresca - but not pomegranate

Does everyone know this?
« Last Edit: June 24, 2010, 06:30:48 PM PDT by BJ275 »

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old_fool
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« Reply #9 on: June 24, 2010, 08:31:35 PM PDT »

Thank you both so much for your thoughts Smiley  My prograf level runs about 7.5 for as long as I can remember. Now it is a 12. For the last 9yrs I have been on 2mg AM and 2mg PM. She just cut it in half with 1mg AM and 1mg PM.

Doc first thought the level was high because in the hospital of course they are taking blood morning, noon and night so I was not fasting like I normally do when I go to my outpatient lab at 6AM. I went to the lab last Friday to have it re-checked and it was still high. She just sent me to the lab this morning---so we will see.

12 is a really big number.  I am 6 months out and Prograf caused my new kidney to function poorly two months ago.  My serum level was 11.

I am cared for by a transplant hospital.  They target a serum Prograf level based on a patient's perceived risk of rejection.  For  most people after the first year, they target 4-5.  So you were really high by that standard. 

I'm on the usual meds for transplant and I have Lupus too--no drugs out of the ordinary. I do know Prograf can be nephrotoxic so this is making me nervous.

Lupus is an autoimmune disease.  It will inevitable complicate most patients treatment.  How it does depends on everything that is going on in your body.  That is why I admire people that cope with lupus and diabetes.  Both affect the endocrine and immune systems.

Maybe all the IV antibiotics in the hospital--could that raise my prograf level?
Refurb

Never heard of this but it doesn't mean it ain't so.  However if you are sick in other ways, your medicine levels may fluctuate by themselves.

Cheers,
~fool

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~old fool
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refurb
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« Reply #10 on: July 01, 2010, 09:14:58 AM PDT »

Yes having Lupus or diabetes indeed complicates matters.  Several local kidney friends had ESRD for unknown reasons and then received a transplant and are basically as good as new...not the case for those like me unfortunately but a transplant is certainly a gift making life much better than dialysis at least in my experience.

Refurb

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BJ275
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« Reply #11 on: July 10, 2010, 08:52:51 AM PDT »

I just got a phone call yesterday saying my Prograf level was too high, and to cut my dose by 1/2 mg.  I have. I'm still waiting for the print out of my lab results - because I was traveling and just got a message - no one mentioned what the level actually was - and I want to know!  Or, I'll call the office on Monday and find out. 

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BJ275
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« Reply #12 on: July 11, 2010, 07:59:37 AM PDT »

I got the paperwork yesterday - my prograf level was 12.1.  They'll recheck it soon.  I had been running at 8.5 or 8.8. The most recent lab a week before the 12.1 was 9.3.  Hopefully, with the lower dose, the level will come down a bit.   

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getlife
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« Reply #13 on: July 11, 2010, 05:19:50 PM PDT »

BJ how is your creatinine?

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BJ275
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« Reply #14 on: August 22, 2010, 07:34:04 PM PDT »

Sorry, getlife, I must have missed this one. My creatinine is good - between 1.2 and 1.5 - don't know why it just won't settle lower :-)   

My prograf was really low this last lab, 3.3.  Dr. increased my dose and I hope it will be more in range tomorrow.

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