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Anyone stop valcyte early?

Transplants | Last Active: Oct 20, 2023 | Replies (11)

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@hello1234

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?

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Replies to "Hi @myringo 😊 Congratulations on your brand new liver!! No need to be terrified, this is..."

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.