I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Python on August 12, 2009, 11:22:31 AM
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Hi everyone. Not been on for a while due to one thing and another, including a dead PC.
Anyway, my son Ian is now 9 months post transplant and up until recently, things were going fine. However, his creatinine levels have been fluctuating quite a bit. Sometimes they're perfectly normal or better, then higher, then lower and today they'd shot back up again. The rest of the blood results are perfectly normal It's just the creatinine that isn't stabilising.
From a health point of view he's doing really well. Has put on nearly 2 stones (28 lbs) since his transplant and is eating us out of house and home.
He did go down with Swine Flu the other week but didn't need any medication except for the odd paracetamol. He's still got a bit of a stuffy nose and a cough but other than that feels fine.
He has to go back and see his consultant again next Wednesday after another blood test on Monday. Even his consultant is unsure what's going on. If the creatinine hasn't come down then he will be going for a biopsy. He is on two immunosuppresants - Tacrolimus (sp) and Microsulphate (sp). We're in the UK so don't know what the American equivalent is. They had to lower the Tacrolimus some weeks back and now they've increased the Microsulphate to see if that helps.
Any ideas on what might be causing this - we hope it's not rejection because he's got a really good kidney match (from my wonderful brother) and I'd hate to see him back on dialysis.
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Oops. I got the name of the medication wrong. It's Tacrolimus (Prograff) and Mycophenolate (CellCept) :oops;
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I'm on those also. How big are the fluctuations Python? And how far out of normal range? My creatinine fluctuates too but never out of the high end of normal and I'm sure his is higher, hence the biopsy. Some meds can cause creatinine to rise (bactrim and heparin are two I've heard mentionned) but if his neph doesn't know what's going on then biopsy is the way to discover whether it is a rejection episode. Now just saying those two words freaks me out as much as it does you, I have no doubt, but it's crucial to find out if it is because most often they can reverse it.
Thinking of you and Ian and please let us know what happens.
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In April (5 months post transplant) my creatinine started creeping up. We lowered my Prograf and my Cellcept, as my doctor thought I might be a tad bit toxic. That stopped the rise for a month, then it went up again just a little. He has since put me on sodium bicarb three times daily and I do labs tomorrow to see if it's come down any further (it went from 1.89 to 1.85 after 2 days of the bicarb). Hopefully it's down further.
I think it's normal to have fluctuations, but as to how much fluctuation I don't know. Keep in contact with your doctor. :cuddle;
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Dehydration due to the flu can cause the creatinine to rise. Having the flu and not having a steady amount of food and liquids can cause the anti-rejection meds to be too concentrated. Is he on any other meds? Has his prograf blood levels been steady? I would compare his labs to see what the blood serum levels are for both Cellcept and Prograf over the last few months to rule out toxicity. I hope he is okay and they can figure out what to do. :cuddle;
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Hope it's just a blip. Let us know. Thinking of you all.
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Hi Python
I have been going through the same situation. everything is going good until now. my creatinine is going all over the place. im also on cellcept and prograf. docs did biopsy and found prograf to be the problem. so now will change meds and see if that helps.
hope they get to the bottom of it.
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Okarol. Ian kept his fluids up and drank loads of water - partly because he has to and partly because he had a sore throat so the water helped to cool it. He did eat but not as much as usual. He's back eating us out of house and home again now.
Because the creatinine levels have been fluctuating from better than normal to high (highest 166 this week), the food thing could be a major factor.
Like many young men (Ian's 22) he can be lazy. His eating times are erratic as are a lot of people's his age in-so-much that he is lazy or has better things to do than cook!!! He has his main meal in the evening with us and has the lion share of everything. Never thought he could eat so much! Just during the day he might snack but, despite us telling him won't cook. He should be having breakfast, lunch and dinner, more often than not the first two get missed out in favour of a snack in the afternoon then a big meal in the evening. I think you might have found the problem - or at least part of the problem.
We can't compare the levels as they tend not to give you the full lab results here in the UK.
Draven. Ian had his Prograf cut back from 3.5mg twice daily to 3mg (x2), decreased to 2.5mg (x2), the Prograf levels got too low so they put it back to 3mg (x2) then taken back down to 2.5mg (x2) and is now back at 3mg (x2) and the Cellcept was increased this week from 500mgs twice daily to 750mg twice daily so we'll see if that makes a difference.
He had bloods taken on Wednesday by his consultant so I think if the levels have risen they'll be on the phone as soon as the results come back from the lab. The results usually come back quite quickly and no-one's phoned today so fingers crossed.
Now the hard part - getting the so-and-so to eat regular meals at regular times.
Wish me luck on that one LOL.
By the way, Prograf and Cellcept are the only drugs Ian is on. He doesn't have anything else.
Kellyt. Told Ian about the Sodium Bicarbonate and he is going to mention that to his Consultant when he sees him next Wednesday.
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I hope it works. I don't have the dosage in front of me. I'll check on that and get back to you. I had my labs done this morning. I'll be calling for results on Wednesday if I don't hear from them sooner. I'm praying mine lowers, as well!
:cuddle;
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Like others have said, the meds can cause the flucuations. Mine have been anywhere from .8 to 1.6. My bun has also been high at times. Good luck to you all.
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OK. Here's the update.
Ian had more blood drawn on Monday and met with his Consultant today. His creatinine level has come down but is still high. His Consultant thinks it was because he had the 'flu. Everything else is fine. His Consultant doesn't think it is rejection but to be on the safe side, he has to get another blood test done next Monday and will meet with his Consultant again next Wednesday. They're both hoping the creatinine will have come down again.
If it remains high or goes up again they'll send him for a biopsy. If it comes down they won't do a biopsy so we can only sit tight and keep our fingers crossed that it comes down.
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Jaclyn's prograf levels were low even though she was taking 11mg morning and night so they gave her some type of anti-fungal meds that boost prograf levels and her level went from 9 to 16.7 overnight. The Nephrologists are thinking this this prograf boost is what caused her creatinine to spike from baseline of 1.0 to 1.7. She has been re-admitted to the hospital. She has been drinking 4.5L of water per day to keep the creatinine down, which has diluted her sodium. She was scheduled for stent removal surgery tomorrow, but that was put on the back burner.
I am sorry that you are having a creatinine issue and hope that the new meds bring the creatinine back down. I will post more when they find a resolution to Jaclyn's prograf/creatinine issue.
I am praying that this is just a bump in the road and we are back on track to good health and happiness with a perfect kidney soon.
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I just got out of the hospital due to my high creatinine. It shot up to 3.0. I went in and had an ultrasound and was found to have a rather large pocket of fluid that was pressing up against the kidney and ureter and causing a urine back-up in the kidney. Not good. My post transplant doctor said that if I had still been going to the clinic for follow-up instead of having gone back to my regular neph, she would have ordered the ultrasound immediately when my creatinine first went up past 1.5.
I hope everything gets worked out for you. You too, Draven!