Prograf Dose

Ldude916

New member
Hello, I am pre-transplant and was pricing out all of the possible medications I might be on after transplant.

I see Prograf comes in several doses; .5, 1 and 5.

What dose levels have post-tx patients been on? Thanks for the input!
 

coltsfan715

New member
I have been on all doses and combination doses at some point or another. Your lab work is checked regularly and especially in the first 6 months or so your dosages may change every few weeks. It is a matter of what level your docs want you at and how you are absorbing the medication.

Lindsey
 

falbie13

New member
Hi,
I have two prescriptions, one for the 0.5 and one for 1mg. I still have to get my labs checked every 2 weeks because my levels never stay the same. Over time, most people can reach a steady dose. I have a lot of trouble with my stomach which effects the elimination time, therefore dosage changes are made. The dose is affected by many things, other meds you may have to take, your kindey function, how well you are moving your bowels, how much you are drinking...it all adds up.

Good luck!
Fallon
 

Joblazer86

New member
Mine have gone up and down but now they are pretty steady. I am on 1.5mg a day of prograf and that has been for awhile.
 

Ldude916

New member
Thanks - anyone consistently on 5 mg? The cost of this is over $700 versus 1 mg is $151....I'm trying to 'guess' what my cost might be.

Also, do you take this once or twice a day?
 
I

itiggz

Guest
I'm post.. This april 3rd will be my 2nd anniversary & I've been on 5.5mg for awhile now.. I was told that the mg's vary, meaning over time it will go up and down.
 

Marjolein

New member
You take Prograf twice a day, on set times as you need to have a constant level.

Your level in the first few months up to 6 months post transplant is usually kept at about 12. What dose you need to take to maintain that level varies from person to person, depends on how your body absorbs it.

I have been on 6 in the am and 5 in pm to have a level of 12. But also on lower doses. And when I was on an antifungal the dose was cut way down to only 0.5mg in te am! An antifungal makes your body break down the Prograf much slower so you'll need to take less when on that.

Right now (I'm 4.5 years post) they want my level to be between 6 and 7 and to have that I am on 4mg am and 3.5mg pm at the moment. But to have that same level have also been on 2.5+2.5

It can vary a lot!

They
 

Ldude916

New member
Besides the $200 discount card from Astellas, did you host a fundraiser to help pay for the cost of the medication, or do you have some other means to afford it?
 

Marjolein

New member
Sorry, I pay 110 euro's a month for insurance and my insurance payed for surgery and pays for everything in hospital and also pays for my medication at home. Don't know about the costs. Really have no clue how I would be able to afford it all.. without my insurance...
So lucky I live in the Netherlands
 

Liza

New member
Hi, Anna's highest dose of Prograff has been 3mg twice a day. The tx team also had her adjust her enzymes she took with her Prograff to help maintain the levels. She started out at 1 w/Prograff and was moved up to 3 enzymes w/Prograff by the time she was released to return home at 2 months post tx. Her levels maintained pretty well at about 6 months post tx. She still had her levels checked regularly though. Then back in Nov. all of a sudden her levels went off and they had to readjust her doses again. She'd been on 1.5 for about a year and a half or so and now she's doubled. The level they wanted her Prograff changed within the first year depending on how far out she was post tx.
 

Ldude916

New member
Thank you for your responses! I figured out too, that the needymeds.org card will pay 80% of the medication that isn't covered by my insurance (whew!).
 

cnsky54RRT

New member
Has anyone had any bad drug interactions with Prograf? Just looking at the Medscape med chart on my iPad, there are a lot of drugs that Prograf does not play well with that would be in a CFer's bathroom - vancomycin, budesonide, colistin, others affecting breathing and some anti-anxiety meds. Any horror stories?
 

Lex

New member
My Prograf is free....

Astra Zenica may be able to help :)

Seriously, though. They have an amazing program for us. They cover all my prograf expenses.

I'm on 6mgs 2x/day since I was about a month out. The actual "dose" doesn't matter. It's the amount that your body absorbs and uses. They analyze the amount in your blood and adjust accordingly. 6 seemed high to me, but my doc assured me that it was only because my digestive system wasn't taking it all in.
 
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