Experiences with

Valcyte

So, the pattern has been 2 weeks off Valcyte with CMV at target. Third week off Valcyte CMV increases but doesn’t meet the threshold to restart Valcyte. CMV viral load doubles every 1.5 days like clockwork. Fourth week off Valcyte CMV exceeds threshold to start Valcyte.

Treatment plan for current CMV flare-up: Temporarily discontinue Myfortic Increase Prograf by .5 mg No antiviral medication (Valcyte) How has it gone?

I was placed on Valcyte 1800mg daily. Seven weeks later they discontinued Valcyte. My CMV had been at target <35 for two weeks at that point. It remained at target without medication for only 2 weeks. Then the CMV was back. I was put back on Valcyte 1800mg daily and am still on it today.

She also said that some patients experience “concerning” side effects to Valcyte like I am; but there are other medication options. She walked me through those. She then talked about the treatment plan we’ll follow. 1. Discontinue Valcyte immediately. Suspend Myfortic for 4-6 weeks.

After 5 weeks of treatment (Valcyte 1800mg daily) my viral liad was at <35. It stayed there for only 4 weeks. Than it elevated. Over two weeks it elevated to 501. They restarted Valcyte So, have any of you experienced anything like this with CMV? Was your transplant team able to get it in check?

Inspite of my low WBC count and pulling of bactrim 7 months early as well as valcyte 1 month early, I’ve had no infections. So I’m staying infection-free with mask wearing and lots of hand washing, etc. I have an appointment at the transplant center tomorrow.

I was prescribed valcyte and magic mouth wash neither of which seem to be very helpful. Anyone else out there experienced this? What did you do? I’m not crazy about switching meds again (I can no longer take tacrolimus). Any thoughts/suggestions?

He’s on Valcyte.

They removed the anti viral (valcyte) and everything returned to normal. However, they put me on Dapsone (e.g. anti-infective) and removed it after two weeks due to, I believe, dropping hemoglobin. Now that's getting better but my creatine rose from 1.21 to 1.35.

Resolved over the next two months with a reduction of Myfortic to 180mg twice a day (with higher dose of Prograf), removal of Valcyte, and one injection of Neupogen. Once things were stable we started to increase the Myfortic. Mid-April we increased it back to standard dose - 540mg twce a day.

Current Meds - Prograf: 3mg in AM, 3mg in PM - Myfortic: 180mg x 2 daily (reduced from 540x2 daily when WBCs started to drop) - Bactrim ( switched to Mepron when WBCs started to drop, but did not tolerate GI side effects) - Valcyte Had blood drawn this morning and clinic called this evening to tell

However this past week they discovered that I had been tested positive fot the CMV virus and immediately put on the Valcyte Drug. Can anyone help me with your experience with this?