Steroid Free Immunosuppression for Transplant

[angela515]

I did ask my neph at my 4-month follow up whether I could ever get off of the prednisone (mostly because of an issue I have with my hip.) He told me that the chance of rejection goes up to 30% without the prednisone. I'm assuming that's based on having a high amount of antibodies. He told me that some patients look at it as "well, that's 70% chance I won't reject." A 5% increased chance is too much even for me to risk it!

I believe that's correct Jill... I think most patients not put on prednisone is because their PRA was very low. For me, my PRA was 0%, my doctor said for him it was a no brainer that he not putt me on prednisone. I said thank god... I been on prednisone from 1990-2004, it would be nice to be off of it, even for a little while.

I agree with you... even a 1% increase is not worth it!

[Meinuk]

I was all set for a steroid free transplant - BUT my donor kidney was CMV positive and I was CMV negative.  My surgeon's protocol for steroid free is incumbent upon dosing with Tacrolimus  http://en.wikipedia.org/wiki/Tacrolimus, but based on recent studies, he did not want to dose a CMV positive kidney.  So, I am on prednisone.

We are attempting a rapid taper, I was 30mg in the hospital, the first week, 25 mg week 2,  15mg, week three, and now, week 4 I am at 12.5mg.  The goal is to be at 5mg (therapeutic goal) by day 60.

Of course, now at day 30, I am starting to be symptomatic, even on such a low dose over the past couple of days, I have been STARVING, and i is a lot of work to not eat.  Thanks to Thanksgiving week, I am 5lbs+, sigh....

Transplant Meds as of Day 30:

Cellcept  1000mg  x 2 per day
Prograf   8mg am; 7mg pm
Prednisone  12.5mg am
Valcyte    450mg  x2 per day
Bactrim   1 per day
K-Phos   1 per day
Nystatin  5cc swish & swallow x2

Now I want to share my sticker shock...  I am going to give you the retail price breakdown (Drugstore.com) for a month's supply of these drugs (medicare pays the first 3 years)  Ironic that the drug  I am most freaked out about is the cheapest!


Cellcept  100 tabs (rx is 60 per month) $    787.54
Prograf   5mg tabs  60 tabs                 $ 1,404.00
             1mg tabs  100 tabs               $    409.63
Prednisone  100 tabs                          $     11.99
Valcyte    60 tabs                             $  2,189,19
Bactrim   generic  30 tabs                   $      15.99
K-Phos   30 tabs                                $      16.99
Nystatin  189ML                                $      42.98

[kitkatz]

Holy crap! Meds are expensive!

[charee]

so does mean for 3 years medicare pays the whole amount and after that you have to come up with money each month ? here in Aus we pay $33 per script and if you are on a disability pension you only pay $5 per script, my first lot of medication cost $ 300 for the month,but after you reach a threshold of $1040 ( not sure of the amount its around that ) in a calender year the price goes down to $ 5 per script .

[skyedogrocks]

When Rob has his transplant (hopefully it comes soon!) he will be prednisone free.  He will be taking another pill that does what prednisone does, but doesn't have the side effects of it.  Due to his diabetes, his sugars go crazy when he is on prednisone.  I'll have to find out the name of the drug and post it.  Maybe someone else knows the name?