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Very Low White blood cells (WBC)

Hi,

I am 3 months post Kidney Tx and last week my WBC's count came out very low (1.2). My doctor immediately stopped Valcyte and reduced Myfortic dose to 360mg a day from 1080mg a day. Today I had repeat lab after 5 days and my count is still very low (1.5), especially my Neutrophils count (0.36). So, my doctor sent me to see a Hematologist, who recommended a shot of Neulasta. I am worried about the side-effects of this shot which I read can be excruciating bone pain. I am confused if I should go for the shot or not or wait for WBC to increase slowly (which my doctor told will since from today he suggested to stop taking myfortic for a week). 

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Replies

  • Are you on Tacrolimus (Prograff)???  That med wiped out my WBC & neutrophils.  Those Neupogen shots are NO joke!!  They work great, but you probably will experience bone pain.  I was glad when they took me off Prograff AKA the devil!  Hopefully, the reduction of the med will fix this as you will always be adjusting med amounts until they find the correct level.  If you are unable to tolerate the meds and they continue to consistently lower your WBC, they may put you on another med.  Just be sure to be your own advocate and get a copy of your lab results and learn how to read them.

    • Yes, I am on Tacrolimus. It seems that Tacrolimus was not the culprit. It was Myfortic (CellCept) and probably Valcyte as well. So, i have been off Myfortic for almost 2 weeks and stopped Valcyte 3 weeks back. My 3months course of Valcyte was almost over anyways. My WBC's seem to be increasing as of labs done last week. And, I avoided taking the shot. Now, I dont think I need it anymore but I had a repeat labs today to confirm. I will know the result in the evening. 

  • Any suggestions or feedback for the Neulasta injection?

    • Sorry Rushi. I was having some problems posting.

      I had very low WBCs (due to a CMV infection - have you been tested?). I was on neulasta and had no problems. While pain is listed as one of the side effects, and it does happen, listed side effects are not a guarantee.

      There's no point in being worried or scared about something that hasn't happened yet. If you have severe pain (and for some, the pain is nothing worse than a muscle ache grade pain) then you simply stop the neulasta and the pain will go away. Simple.

      While there's no harm in waiting for a bit, there are also inherent dangers in very low WBCs - you could catch something that requires a lot more intervention than a simple neulasta shot.

      So, if things don't improve in short order, give it a try. If it doesn't help, or if the pain is too bad, stop the drug and the pain will go away.

      • Thanks Cora for your guidance. This is really helpful. They did test CMV and it came out "undetectable", which is great. I have taken appointment for the shot on Monday. I also have labs today. Hopefully all is good. 

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