| Author |
Message |
Thresea 2005 pancreas
Member
Username: Thresea
Post Number: 52
Registered: 03-2009
| | Posted on Tuesday, November 08, 2011 - 09:48 pm: | 
|
I know this has probably written before but my prograf or tacro level is and has been way off, this July it went all the way up to 18 they got it down by august to 5 all good and then in september they said it was lower than four my good level is between 5-7 I still have not reached 5 so I have been 4 and 4.1..ok my question do you think I am doing damage to my transplant by being so low for so long, I was not real worried until tonight when I started thinking about it. I feel fine still work out with no problems. |
CiscoKidney07
Forum Leader
Username: Gregg
Post Number: 5102
Registered: 03-2008
| | Posted on Tuesday, November 08, 2011 - 10:17 pm: |
|
I could be wrong, but in many cases, I believe what they look for more than anything is consistency. Apparently, your doctors are not worried about it, right? Obviously, I am no doctor. Refresh my depleted memory. When did you get transplanted? Also, was July the first month that it was out of whack? And if so, did they adjust it then? I think that all of the things I mentioned COULD have some kind of effect on their decision to do something or to not do something. I would think that they do not want your levels to be that high again, which could explain why they are not too concerned. Let me try to put your mind a little bit at ease. Sometimes, I freak out about health issues and it isn't like you don't have the right to, but I just have to calm myself down when I start to think too hard. (If I think to hard and start to talk to my wife about it too much, she might kick me, and I don't want that, LOL!!) I hope this helps.
|
bill s
Member
Username: Bill_s
Post Number: 66
Registered: 08-2011
| | Posted on Tuesday, November 08, 2011 - 10:21 pm: |
|
I don't know how your TX center works but I can email mine anytime I have a question. This is something I would ask them now - it's probably nothing but I notice that sometimes they get swamped and forget who we are. |
Thresea 2005 pancreas
Member
Username: Thresea
Post Number: 53
Registered: 03-2009
| | Posted on Wednesday, November 09, 2011 - 06:56 am: |
|
Thanks you for responding, my transplant was is 2005 and yes this is the first time it has ever been out of whack. When it was high this summer they just kept reducing my prograf to adjust my level, I would have contacted the transplant center yesterday and they did call me but I was at work and could not call them back until after they had closed, so I am going to try them this morning. I know when it first started going real low I asked what could happen and they just said the lower it is the more chance I have of rejecting...that is what got me thinking. I will let you know what they say. |
cruizin
Member
Username: Cruizin
Post Number: 204
Registered: 09-2010
| | Posted on Wednesday, November 09, 2011 - 09:35 am: |
|
Low prograf levels can give room for rejection.
High prograf levels can lead to chronic CNI toxicity.
So ... best to get the doc's opinion.
So many things can affect prograf levels ... basically any food/drug that uses the CYP3A, of which there are many.
Received kidney Mar 16, 2011, from my brother! 3/6 match
St. Joe's, Hamilton, ON
Peritoneal dialysis Nov '08 - Mar '11
Dx 1995 - believed to be chronic glomerulonephritis
Started CAPD Oct 2008 |
|
Morley905
Member
Username: Morley905
Post Number: 100
Registered: 07-2009
| | Posted on Wednesday, November 09, 2011 - 05:49 pm: |
|
I'm sure you do this when you go for bloodwork, but tac levels should be checked 10 - 12 hours after you take prograf. Also, evening dose should be 12 hours after morning dose and not less than 12 hours.
One of the foods that is a problem is grapefruit and grapefruit juice. In addition, prograf should be taken on an empty stomach. Prograf is very toxic. I don't know which is worse high or low tac levels. Good luck with getting the results consistent. BTW, my level has always been between 5 and 6.
| Simultaneous Kidney/Pancreas Transplant |
|
bill s
Member
Username: Bill_s
Post Number: 67
Registered: 08-2011
| | Posted on Wednesday, November 09, 2011 - 06:35 pm: |
|
Morley905, My TX center (UCSF) doesn't seem to care if you take your meds on an empty stomach and so I always take my meds (AM and PM) with my meals. Taking food with the meds has a tendency to reduce the bad effects of the meds on the stomach. Since prograf is measured in blood tests, when and how you take it seems to not matter as long as you are consistent. My levels have been between 7.9 and 8.6 for the past 2 mos and I recently reduced my intake from 4 mg/day to 3 mg/day at my TX center's request and I will have my blood tests tomorrow to see the effect. (kidney TX in Feb 2011) |
John M
Member
Username: Jam1107
Post Number: 148
Registered: 12-2006
| | Posted on Wednesday, November 09, 2011 - 06:56 pm: |
|
Hi Theresa,
My Prograf level fluctuates on occasion for no reason. Since this is my second transplant, my center likes to keep my level 8-10. My level will be stable on the same Prograf dose for a few months, then suddenly change. I'm a very consistent guy -- always take my meds on time, eat at the same time, don't eat "forbidden" foods, etc. Just this past month, my dose changed again.
I don't read anything deep into this -- but have monthly bloods drawn as a result (as a matter of fact, I'm due to go tomorrow morning). Maybe this is something peculiar to pancreas patients? When I lost my first transplant, my level dropped to 2 after being around 6 two months prior. Needless to say, I'll take the extra precautions and blood work to protect this organ.
I understand that this all may be my body's reaction to the drug. I hope you find your answer soon.
Wishing you the best,
John
Pancreas alone transplant 4/13/04; rejected 2/07; removed 5/31/07.
Second pancreas transplant received 11/11/08.
NY Presbyterian/Cornell Medical Center, NY |
|
Morley905
Member
Username: Morley905
Post Number: 101
Registered: 07-2009
| | Posted on Wednesday, November 09, 2011 - 07:11 pm: |
|
Bill S
My transplant unit says the same thing...just take the medication and they don't care if the meds are taken on a full or empty stomach. Their reasoning is that too many patients were trying to follow the empty/full regimen and more forgot to take then took.
BTW, my prograf dosage is 3mgs AM and PM. I've been taking that dosage for the last three years and my tac levels have been the same since. I must be doing something right because my latest bloodwork came back today with a creatinine of 70 (0.795) and fasting blood sugar was 4.2 (75.6).
| Simultaneous Kidney/Pancreas Transplant |
|
Thresea 2005 pancreas
Member
Username: Thresea
Post Number: 54
Registered: 03-2009
| | Posted on Wednesday, November 09, 2011 - 08:03 pm: |
|
Thanks everyone, I spoke to the center today and they upped my dose, which I knew they would do, she said they have been watching my levels very closely over the past months trying to keep me out of the danger zone, I told them I would not freak out until they do, it is just just so bizarre how my levels got all out of whack. I'm with you John I don't eat anything weird or anything I'm not supposed to and nothing major has changed in what I do. They could only say that my body is absorbing the medicine differently. I am going next week again and getting it checked. |
keith elliott
Member
Username: Keith_elliott
Post Number: 198
Registered: 11-2010
| | Posted on Thursday, November 10, 2011 - 08:55 am: |
|
Have you tried using probiotics ? I think (but not sure) they help your guts deal with prograf better .. maybe they will help slow the absorption and give you higher trough levels ? Obviously that's a question for your docs rather than something you should try and hope tho! |
