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prograf and tremors...

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Hepatitis
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Posted 8/2/2013 7:14 PM (GMT 0)
Another update: prograf has been lowered from 2.5 mg 2x daily to 2mg 2x daily. The reason is because prograf level was 10.6 and the creatinine level was 1.9, at the higher end of normal...thus a reason for a change in prograf dosage . Hopefully, the tremors will minimize now that the dosage is being lowered.
Posted 8/2/2013 7:21 PM (GMT 0)
Good that they are keeping a close eye on her, as I felt sure they would. How often does she have lab work now?

Hugs,
Connie
Posted 8/2/2013 7:39 PM (GMT 0)
Good afternoon,

I'm glad the prograf is going down. Mike was on such a high dose for a while...11mg morning and night.

When his prograf level started finally to come up, they backed off.

But he takes cellcept also.

I have always thought that maybe his liver didn't MATCH as well as some others. He was having some rejection they noticed at his last year biopsy and keep him on both prograf and cellcept.

Is she feeling better.

Posted 8/2/2013 10:49 PM (GMT 0)
@ hep93...she gets lab work 1x a week.

@ mamalama...11mg sounds like a high dosage. Is it 11mg 2x daily or 11mg total per day???

She will start with the 2mgs tonight...I am hoping that the tremors will minimize and the dull headache she has will disappear. I am also curious if lower the prograf dosage will help lower blood pressure???
Posted 8/3/2013 12:33 AM (GMT 0)
ML said "11 mg morning and night," so that's 11 mg twice a day. I think everyone takes it twice a day.

Hugs,
Connie
Posted 8/3/2013 1:26 PM (GMT 0)
@ Connie...that would be 22mg total per day?!? That sounds high.
Posted 8/3/2013 4:08 PM (GMT 0)
It is high, but in that case, it was needed. I've seen other people on a transplant forum that have taken larger doses. Whatever it takes to keep the organ from rejection.
Posted 8/3/2013 4:40 PM (GMT 0)
It's what was prescribed for Mike

And he has done pretty well. He is down to 1 mg am. And .5 mg in the evenings.

He was on 500 cellcept twice a day also. He has been pn and off cellcept. Just now he is on 250 mg twice a day

Blood type match is only one of the matching criteria for a donor organ. There are several other autoimmune factors that make a perfect match. I have always believed that Mike was so near death they found him a not quite perfect match that was the right ABO type and healthy. But he has had some rejection along the way.

At 2+ years he is doing pretty well

Carol

Post Edited By Moderator (hep93) : 8/3/2013 12:01:15 PM (GMT-6)

Posted 8/3/2013 6:11 PM (GMT 0)
WD, it takes quite some time for the Prograf dosage to be reduced, and they do it gradually. If there are signs of rejection, they raise it up. If the levels get too high, they reduce it. As Carol posted, Mike is now at 1.5 mg a day...nearly as low as mine (1 mg a day), though I haven't taken CellCept for quite some time.

The Transplant team has a number in mind that they want the Prograf level to be...in my case, 6.5. If it is 6 or 7, they won't make any changes, but if it is 5 or 8 a couple of times in a row, they will adjust the Prograf dosage. Mine hasn't been changed in nearly a year.

So in your mom's case, don't be impatient. It takes a long time for the body to recover and adjust to the meds and the new organ.

Hugs,
Connie
Posted 8/4/2013 3:35 AM (GMT 0)
@ David...I agree with you...what ever dosage works. Every person is unique so what works for one, may not work for another.

@ mamalama...so glad to hear that mike is doing well...yeah!!! Recovery is a long bumpy road.

@ hep93...I am just hoping the tremors and dull head aches resolve/subside.I know...I need to be patient.

Has anyone else experienced a dull headache post transplant? Could it be due to prograf???
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