CMV- Valcyte regimen after transplant?

[Sax-O-Trix]

Okay, with all the talk of CMV virus here, I e-mailed my coordinator concerning my CMV status.  I apparently tested negative for the anti-bodies for CMV and once again, the team will not share information on my donor's status (and my donor doesn't know his CMV status.)  She told me I would be on a 6 month regimen of Valcyte post-transplant.  I don't know officially what my donor's status is, but have to guess positive if they plan on putting me on Valcyte for 6 months post-transplant.  Ugh.

Is it standard procedure for all kidney transplant patients to be on Valcyte after the transplant or just those who test negative?  The team never mentioned a word about this anti-viral drug until I asked about it directly two days ago.  They told me I'd be on an antibiotic, cellcept (generic), prograf (generic) and prednisone.  How many other toxic drugs are they going to say "Oh, by the way" you need to take this too?!?  This anticipated transplant is really becoming overwhelming and terrifying to say the least...

[okarol]

Your donor can call the transplant team and ask his status.
Jenna was on Valcyte protocol even though she and her donor were CMV negative. They said it was precautionary and would not cause her any harm.

Here's what Jenna left the hospital with after her transplant in Jan 2007:

500mg Cellcept, 6x per day
1mg Prograf, 2x per day
40mg Protonix, 1x per day - prevent ulcer/heartburn
400mg Bactrim, 1x per day - anti-bacterial - 6 months
250mg Cipro, 2x per day - anti-bacterial - short-term
450mg Valcyte, 1x per day - anti-viral - 3 months
10mg Mycelex, 4x per day - anti-fungal lozenge - 3 months
2.5mg Norvasc, 1x per day - blood pressure
multivitamin, 1x per day
baby aspirin, 1x per day - prevent blood clots
100mg ducusate, 2x per day - stool softener
325 ferrous sulfate, 3x per day - iron supplement
1mg folic acid, 1x per day - nutritional supplement
400mg magnesium 3x per day - nutritional supplement
400mg vitamin D, 2x per day - increases calcium retention
250mg Nuetraphos, 3x per day - potassium/posphate supplement

Now, four years later, she still takes CellCept, Prograf, Prilosec, Bactrim (twice a week), multivitamin, iron, folic acid, Vit. D, calcium & magnesium, bicarbonate and has just begun a blood pressure med (her kidney function is about 18% now.)

[willowtreewren]

Hi, Sax!

Carl is on Valcyte for 6 months post Tx.

He is also taking 15mg Prednisone
150mg Prograf (generic) 2x day
1000mg Celcep (generic) 2x day
Septra 80-400 1x day (antibiotic)
Zantac
Vitamins

He has had some side effect...shaking from the Prograf (but that is much abated now that the dose is lower) and increased cholesterol.

This every 12 hour regimen is not nearly as invasive as dialysis!

Aleta

[Sugarlump]

Standard post-tx protocol now to give Valcyte for CMV. CMV is really nasty if you get it (can kill the kidney off and can be fatal to you), you are particularly at risk if your donor positive and you negative and it's better to be safe than sorry. I'm positive and my donor positive this time but still risk. This is probably one of the easier drugs to stomach.
The others are more difficult to tolerate. Especially Prednisolone.
 

[Zach]

Okay, with all the talk of CMV virus here, I e-mailed my coordinator concerning my CMV status.  I apparently tested negative for the anti-bodies for CMV and once again, the team will not share information on my donor's status (and my donor doesn't know his CMV status.)  She told me I would be on a 6 month regimen of Valcyte post-transplant.  I don't know officially what my donor's status is, but have to guess positive if they plan on putting me on Valcyte for 6 months post-transplant.  Ugh.

Is it standard procedure for all kidney transplant patients to be on Valcyte after the transplant or just those who test negative?  The team never mentioned a word about this anti-viral drug until I asked about it directly two days ago.  They told me I'd be on an antibiotic, cellcept (generic), prograf (generic) and prednisone.  How many other toxic drugs are they going to say "Oh, by the way" you need to take this too?!?  This anticipated transplant is really becoming overwhelming and terrifying to say the least...

What ever happened to informed consent?

[Sax-O-Trix]

What ever happened to informed consent?

Good question, Zach... 

[RichardMEL]

Down here 6 months post-tx appears to be standard also. I've just been given my 3 months worth to take me up to the end of my allowance. Given this stuff is SUPER expensive I'm not surprised. My question is what happens after six months? Do they consider any CMV in the donor kidney (mine tested CMV+, but I am CMV- currently) is killed off by the Valcycte and then you're safe? I'm not sure.

As a side note valcyte also apparently kills of HSV (1 and 2) and other similar nasties that can cause you grief. They are specially concerned about HSV infections in the mouth which is again why dental care is so important post-tx.

[Sugarlump]

After 6 months your other drugs should by then be low enough dosage to allow your body to fight CMV on its own.
That's the theory!!! Most people have CMV lying dormant in blood and doesn't cause a problem, only when heavily immunosuppressed!
I could be a Doctor at this rate !!!!     

[Jie]

My donor is CMV negative, and I am CMV positive. I do not need to take any Valcyte. It looks like different centers do different things.

[Chris]

Sax, I'm pretty sure you will be on more meds than what you listed. Some of it will depend on how you are post transplant but some of the meds are just temporary. I can't remember how many different meds I was on post transplant without looking up old files on my computer and that may not include IV meds you may need to do at home. So some answers they can't give you till you have the transplant, but they could give you an idea of possible medications for various situations. Just ask, be proactive to learn as much as possible about YOUR health, but don't get to  stressed over this. If you get to worried about meds, hold of having a transplant till you feel right about having one. This is a life altering decision to make after all, so be mentally prepared.

[rsudock]

my donor was + and I was - and the transplant team gave me Acyclovir to take...I still take it since I still have the kidney.

xo,
R

[Jie]

my donor was + and I was - and the transplant team gave me Acyclovir to take...I still take it since I still have the kidney.

xo,
R

I thought my center is not conservative, your center is even less conservative. My center said if I was - and the donor is +, then I would have to take Valcyte. Because I am + and the donor is -, so my risk is very low and I take only Acyclovir, which is not as effective as Valcyte to prevent CMV.

[Sax-O-Trix]

Turns out both of us are CMV -, but I was started on 450 mgs. 1x a day of Valcyte as a precaution.   

[maglaw64]

Valcyte is an antiviral med.  I was put on that, Cellcept, Bactrim, prograf, and nystatin.  Eventually I was taken off of the valcyte, Bactrim and nystatin.  I take acyclovir as needed because my fever blisters/cold sores have become much worse because of the anti-rejection meds.  I use Nystatin as needed also. 

[lawphi]

My husband and the donor are both positive.  He is taking a cytogam ivig though an iv to prevent the virus from waking up.

[kellyt]

I was on Valcyte for six months post transplant.  I was also CMV negative and my donor positive.  I also had to do 9 weeks of an IVIG treatment.  It began 3 days after I was discharged from the hospital, so about 1 week post op.  Valcyte is expensive (or it was for me, anyway)   Take Care!!!