| Author |
Message |
Paul
Member
Username: Psleonard
Post Number: 1
Registered: 08-2011
| | Posted on Wednesday, August 17, 2011 - 06:09 am: | 
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Interested in hearing from anyone having trouble keeping appropriate Prograf levels and if it could be from exercise.
My wife is 12 weeks out from Liver transplant and was very athletic prior to. She is now working towards regaining some of the lost fitness, but even with 3 Prograf in the morning and 3 at night, the levels seem to be dropping.
We really cannot attribute the drop to anything else. Anyone ever experience anything like this and how did you deal with it? |
Tamara
Member
Username: Heppygirl
Post Number: 44
Registered: 05-2011
| | Posted on Wednesday, August 17, 2011 - 07:01 am: |
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I am on 4.5 morning and evening so 3 doesn't seem so much to me... And I don't exersise that much.. Just the regular amount of housekeeping en bicycling :P
Tamara
24y/o, from the Netherlands
Cystic Fibrosis, Dxed at birth
Bilateral lungtransplant, September 2010
http://muffinmeetsworld.blogspot.com
Anywhoo... |
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Paul
Member
Username: Psleonard
Post Number: 2
Registered: 08-2011
| | Posted on Wednesday, August 17, 2011 - 08:09 am: |
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Thanks Tamara. As a side note, coming off transplant she was on the 3 & 3 and the prograf levels steadily climbed over a few weeks and eventually got so high that they cut her dose to 2 & 2. Coincidentally this was around the time she started to exercise more. Within 2 weeks the prograf levels got so low they increased the dose back to 3 & 3, but she has not seen the levels climb back up. |
Tamara
Member
Username: Heppygirl
Post Number: 45
Registered: 05-2011
| | Posted on Wednesday, August 17, 2011 - 10:27 am: |
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Haha ok.. didn't know that had such an influence, good to know More reason to work out!
I had different levels of Prograft after my transplant. Started at 2x5, climbed to 2x6, dropped to (lowest) 2x1, back to 2x4 and since three months 2 x 4.5 Maybe if I excercise it's getting higher? I exercised more the last months so I think that's what caused it then..
Tamara
24y/o, from the Netherlands
Cystic Fibrosis, Dxed at birth
Bilateral lungtransplant, September 2010
http://muffinmeetsworld.blogspot.com
Anywhoo... |
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Mohan
Forum Leader
Username: Mraghavan
Post Number: 190
Registered: 12-2009
| | Posted on Wednesday, August 17, 2011 - 10:28 am: |
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The exercise may be a factor, but Prograf levels generally vary with adjustments. Low levels of Tachrolimus can cause a risk of liver rejection, so I would stay in touch with your transplant doctors about it.
I experienced this just this past week.
Mohan
Liver Transplant 04/18/2009
University of Colorado Hospital |
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Tamara
Member
Username: Heppygirl
Post Number: 46
Registered: 05-2011
| | Posted on Wednesday, August 17, 2011 - 10:41 am: |
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Yeah i know, I'm in my first year now (I have new lungs btw) and have to go to the hospital every 4 weeks now, almost 1 year post. So hop[efully next time there will be 6 weeks in between! They check my levels every time, and they are really steady since almost from the start (three months or so) so that's actually really good. No experience of rejection till now, I'm glad!
Tamara
24y/o, from the Netherlands
Cystic Fibrosis, Dxed at birth
Bilateral lungtransplant, September 2010
http://muffinmeetsworld.blogspot.com
Anywhoo... |
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DAND33
Member
Username: Dand33
Post Number: 5
Registered: 08-2011
| | Posted on Wednesday, August 17, 2011 - 11:33 am: |
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I am 4.5 months post liver transplant, 61 yrs old. My Prograf is now 4/2 times daily but I am also on 5 mg of Predisone for rejection. I have had no fatigue and after 90 days I filed the Tx in my head as a thing of the past.. However, my body told me I was out of shape. I do well with 7 hours of sleep. I fly airplanes, not for a living but it is important to me. The FAA gave me my license back at day 115 so I can't be doing all that bad. I am on a study to take the rejection medicine to ZERO !! I hope it works. My rejection episode was 3 weeks post transplant. Google "Dan's Liver Blog" for more info. |
CiscoKidney07
Forum Leader
Username: Gregg
Post Number: 4826
Registered: 03-2008
| | Posted on Wednesday, August 17, 2011 - 08:09 pm: |
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Your prograf levels vary quite a bit, especially right after transplant. Eventually, you should get to a place where they will not have to adjust anymore.
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bill s
Member
Username: Bill_s
Post Number: 14
Registered: 08-2011
| | Posted on Thursday, August 18, 2011 - 01:30 am: |
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Hi Paul,
Prograf is one of the few drugs i know of that can be accurately measured in the blood. In my case (kidney TX, 6 months ago) they are shooting for a level of 8-10. Two weeks ago it went above 10 but today it is at 9.7 so they won't take any action. Your wife's doctor should tell you what level in the blood they are aiming for - then you could just check it every time a blood test is done. Since her TX was done 3 months ago, she is probably getting a blood test at least once a week. When I went home from the hospital I was on 8 tablets (1mg each) twice a day which was measured in my blood at about 15-16 (20 is the max they allow). They adjusted it over the next few weeks down to 4 twice a day, and as the level in the blood got more stable they further lowered the level until I now take 2 in the AM and 3 in PM and I now get blood tests every 2 weeks. Hope this helps you. |
