WBC down despite lower med doses

[RightSide]

For months after transplant, my WBC count was low-normal despite fairly heavy doses of CellCept and Prograf.

But now, more than 6 months later, my CellCept dose is down to 750mg/morning 500mg/evening, and Prograf is down to 3 mg morning/3 mg evening.  Yet my WBC count fell significantly.  Now it's 35% below the normal range.

Anyone else experienced anything like this?  And how did you and your neph handle it?

I'm worried because we'll be getting back into the cold and flu season soon.

[edersham]

I had the same problem about 4 months after transplant. They first thought it was cellcept and replaced that with 10 mg of prednisone for four months. It turned out to be either bacrim or valcyte so I was able to excape the evil prednisone AND GET BACK TO 750 mg of generic cellcept for 9 months now with normal wbc's.

Good luck
Ed

[rsudock]

I experienced this as well...took me off Bactrim for awhile, but I always had a really low one. When I was teaching I tried to be viligilant about not touching my face, washing my hands all the time, airing out the room, etc...

It is a crazy tightrope we have to walk isn't it?

xo,
R

[okarol]

What are your trough levels of Cellcept and Prograf?
How often do you get your labs done?
I believe the WBC is supposed to be in the low-normal range. Normal is 3.8 - 10.8.
Jenna's is usually about 5.1 - it's been 7.0 - higher the last couple of months.
She's on very low doses of Cellcept (1/4 of a 500mg tablet = 125mg AM and PM) and her Prograf is 3 in the AM and 2 PM.
The meds can be more concentrated if you're in heat, and maybe not drinking enough. I don't know if this is the case with you but check and see when the number started to drop.
I would ask the neph for guidance.

[paris]

Mine is always below the lowest range of normal  - never over 3.  I am 11 months post and the transplant team isn't concerned, so I am trying not to be.  I am super careful around people, germy areas, etc.    Celcept - 250mg, 2 capsules 2x day      Prograf  - 1mg, 2 caps 2x a day.

[RightSide]

What are your trough levels of Cellcept and Prograf?
How often do you get your labs done?
I believe the WBC is supposed to be in the low-normal range. Normal is 3.8 - 10.8.
Jenna's is usually about 5.1 - it's been 7.0 - higher the last couple of months.
She's on very low doses of Cellcept (1/4 of a 500mg tablet = 125mg AM and PM) and her Prograf is 3 in the AM and 2 PM.

I would ask the neph for guidance.

I get my labs done monthly.  My WBC dropped to 3.2 this past week; it had been around 4.8 for most of the time till now.  I suspect that my neph didn't notice my WBC dropping last month, and so this may represent a two month decline.

When my neph got this news, he reduced my dose of CellCept and took me off the Bactrim.  I didn't know Bactrim could do that!  It's an antibiotic, not an immunosuppressant.   

My daily dosages now are:

CellCept:  500 mg morning, 500 mg evening
ProGraf:  3 mg morning, 3 mg evening
Prednisone:  5 mg morning

That's it.

The meds can be more concentrated if you're in heat, and maybe not drinking enough. I don't know if this is the case with you but check and see when the number started to drop.

I'm a guy.  I don't get in heat.   

But seriously, while I have been active in the summer's hot weather, I drink plenty of fluids and I urinate frequently.

[okarol]

 

[edersham]

My guess would be that if your wbc is ok at your next test, they will increase the cellcept. If your still good with the wbc next test then they will drop the prednisone.  Just my guess based on what happened to me.

Ed

[rsudock]

My suggestion about the bactrim was spot on! I figured the neph would do that...hope it starts to get better!   

xo,
R

[olivia]

I had that problem too, felt like crap with a low wbc count, It was worse than being anemic. FElt weird, no energy, foggy feeling, legs couldnt hold me up, couldnt walk
They dropped my dose of Valcyte and Cellcept. My  primary care doc told me to stop the Bactrim for a while.
WBC count then dropped to 0.5, so they said go to hospital or go for a shot. I went for the shot. I only needed two shots. ( felt even crappier after the shots ) Took a while for the wbc count to go up. After it went up to 5 again I was able to leave the house again.
Through all this I had to have blood work weekly.

So if You dont feel well with this low count, I would let transplant know right away.
Take care
Olive