Anyone stop valcyte early?

Hi @myringo 😊
Congratulations on your brand new liver!! No need to be terrified, this is all part of the early transplant journey. Welcome to the process of tweaking of the medication cocktail for your body! I had the exact situation. My donor was CMV positive and I was CMV negative, just like you (It's a very common scenario in transplant!).
There is an attempt immediately after transplant, when immune suppression is at the highest to keep CMV away by using Valcyte prophylaxis.
I took the full 6 months of Valcyte in an attempt to keep it away and on the 8th month, I was positive for CMV.
I was treated for the CMV and I am now negative. So a two week difference is not a major decision if they are trying to solve your low WBC. Two weeks less of Valcyte is not a game changer.
They want to identify which drug (or dosage) is causing the low WBC. That is a more important priority to avoid opportunistic infections then two more weeks of Valcyte prophylaxis.
If you test positive for CMV at anytime along your journey, you will be successfully treated. Don't worry.
What meds are you currently taking and what's your current WBC now that Valcyte is gone?
In the early days of my transplant, my WBC was 1.0 which was scary. I know how you feel.
It's great that they are actively working to resolve it as soon as possible. Ultimately, your immune suppression dosage may be lowered or an immune suppression med change depending on how your body responds to the removal of Valcyte and the other things they lower or change as part of the tweaking process over the coming weeks. All will be well.
Low WBC is also very common in the beginning until the meds are adjusted perfectly.
How often are you doing labs to monitor your numbers?

I am doing labs every two weeks my wbc was 2 at last lab and I have labs tomorrow including test for cmv. My mycrophenolate was decreased as well. I am on 10 mg tac every 12 hours just to get me at level range of 6-8. Thanks so much for your reply it helped calm my nerves.

I had a kidney transplant a year ago, and had to take Valcyte ! for a few months. It decimated my White blood cells; specifically, the neutrophils, which are instrumental in fighting infection. I had to stay in the house all the time, and not see anyone. I quit Valcyte, and got a shot to get my WBC up again. It came up slowly. During that time, I became infected with BK virus. I had my meds changed again, increasing the Prednisone and dropping the Cellcept completely. I still have BK virus more than a year later. The Prednisone side effects are not pleasant, but at least I’m not on dialysis.

Hi @myringo 😊
I am so happy that I was able to calm your nerves about stopping Valcyte two weeks early.
The quicker your WBC comes back closer to range, the less chance for opportunistic infections like CMV and BK to come into play.
I am glad to see your WBC is at least 2.0 (and climbing!) and you are testing every 2 weeks. What is your current reduced dosage of Mycophenolate?
(Do you take your 10mg of TAC every 12 hours with or without food to achieve your 6 to 8 range?)

Hi @roxanne12345 😊
I have a similar story. I had CMV in my first year and then BK in my second year.
I assume that you are taking TAC or something with your Prednisone? What is your current increased dosage of Prednisone? After one year, is your BK viral load under 1000 in the blood? I found that my BK viral load really bounced around a lot until it came down. I am currently down at 65 BK viral load in the blood and 400,000 in the unit which is much better.
Which side effects are you experiencing with Prednisone?

I eat something light 2 hours before I take meds or I get stomach upset. I am on 750 mg every 12 hours of the mic but I was on 1000 every 12 hours. My wbc was 1.8 today😢

I am not on prednisone just tac and mic. I was on prednisone taper the first month. I am really hoping to avoid the infections but from what I’ve read I’m pretty high risk for it. One day at a time and trust God is what I strive to do but sometimes my anxiety creeps in.

Hi @myringo 😊
Do not worry, all will be well. This is the normal process to find the perfect immune suppression "cocktail" that avoids both rejection and infection. It's a slow tweaking process of taking labs and slowly adjusting.
This was my exact scenario!
I had the 30 day Prednisone taper, just like you.
I started with 1000 mg of Mycophenolate twice a day, just like you.
My TAC range is 6 to 8, just like you.
When I became positive for CMV, my Mycophenolate was reduced to 500 mg twice a day and I took Valcyte to treat the CMV.
The CMV resolved and a few months later I was positive for BK virus (which meant I was still over-suppressed) so my Mycophenolate was reduced to 250 mg twice a day.
Now, all is well at my current medication combination.
My WBC recovered and is in the low range, no CMV, no rejection, low BK.
What did Transplant say about your new WBC result?
Is the plan to take your labs again next week or make a med change?
Is your TAC blood level result in range?

My Dr lowered my microphenolate to 500 mg twice daily. I get labs twice weekly. Waiting on my new tac result today. Last Tac was an 8. Just trying to stay calm and breathe and take one day at a time

Hi @myringo 😊
You are doing everything correctly and it sounds like your transplant doctor is actively involved in your frequent labs which is awesome!
This is a nerve-wracking process. I totally understand. I have gone through it too. But I can assure you that once your meds are adjusted for your body chemistry, you will be able to relax.....and then you will wonder why you made yourself so crazy about it 🙂
That's how I felt when the immune suppression meds were finally adjusted to me!