Cell Cept and low white blood cell count

[Amanda From OZ]

I thought i would ask the most educated bunch of people i know about about this problem.. 

My white blood cell count has been continuously dropping, it is now at a VERY low level (i don't remember the exact numbers), and the doctors have told me its due to the Cell cept, they have lowered my dosage down to 500mg and it still continues to drop. Has anyone has any experience with this? if so what did they doctors do about it.

Thanks in advance for the advice.

Amanda
xxoo

[Roxy]

Mine has been doing that for the past few months. They are deciding on if they want to reduce the cellcept now or not. My white blood cell count has been between 1.7- 2.3 since August. I am on 500mg four times a day still.

[okarol]

http://www.brighamandwomens.org/transplantsurgery/Patient/MaintenanceMedications.aspx says:

What are some of the more common side effects of CellCept?

    * Decreased white blood cell count:  it is important that we maintain your white blood cell count, as it is one way to prevent you from getting an infection.  Decreased white blood cell counts are common in patients taking CellCept.  If this side effect occurs, it may require that we reduce your CellCept dosage.

[Amanda From OZ]

Thanks Karol and Roxy.

I am on 500mg twice a day, but its still dropping. I think they might be reducing it tomorrow. 

[Falkenbach]

When I went into hospital about 6 weeks ago with a stomach virus, my white cell count was 0.6

I was taking Valgancyclovir (as my bloods were showing possible CMV) as well as 1 gram of Cellcept, twice a day (this has since been dropped to 500mg twice daily).

They took me off both the Valgancyclovir AND the Cellcept whilst I was in hospital for that week, and increased the prednisolone so my rejection risk wouldn't get too high. I was given sub-cut injections (can't remember the drug, sorry) to increase my white cell count, and after I left hospital my reading went back up to 20!

I was put back on Cellcept at 500mg twice daily after hospital, and when possible CMV started showing in my bloods again, I took another course of Valgancyclovir. My white cells again dropped to around 3.6, but have come back up since stopping Valgancyclovir yet again.

I think, therefore, I must be tolerating the current dose of Cellcept.

Not sure how this relates to your case, though. This is just what happened with me.

[stauffenberg]

Of the standard anti-rejection drugs used, only Cellcept (Mucophenolate mofetil) and Azathioprine reduce white blood cell levels, and of the two, Cellcept is by far the worse.  The other drugs used for transplant preservation -- Cyclosporine, Tacrolimus, Prednisone, and Sirolimus are all harmless to the white blood cell count.  Perhaps your nephrologist might want to consider a different mix of drugs for you.

[Romona]

Hi Amanda,
If you feel feverish or sick at all get to a hospital right away. My white blood count dropped very fast over the course of three weeks. I was taking Valcyte at the time and I also had Campath before my transplant. Please take care and try not being around anyone that is sick. I was put in isolation for a few days until the count came up.

[Amanda From OZ]

See i new you all would come up with some wonderful information..... 

I went to the doctor today and she has taken be of bactrim (spelling) and Valgancyclovir, we will see what my results say.

Stauffenberg -  i asked my doctor to swap me from tacro to sirolimus but she wouldn't.... she said sirolimus will cause my white cells to go lower? but i also did not think this was the case.

Romona - how low was your White cell count when you were asked to stay in hospital isolation?\


Thanks again.

Amanda
xxoo

[angela515]

i asked my doctor to swap me from tacro to sirolimus but she wouldn't.... she said sirolimus will cause my white cells to go lower? but i also did not think this was the case.

I'm on Tacrolimus and Sirolimus... post transplant 10 months now, never had a problem with my white cell count yet. Good luck hun. 

[Falkenbach]

As cyclosporin was causing me such problems in my joints, I was taken off it.

I am now on Sirolimus and CellCept (instead of Cyclosporin and Cellcept). And prednisolone of course.

[KT0930]

Yep. The typical numbers for WBC here is around 20,000; mine dropped to 900. I was on cell-cept, but had also recently done a round of zithromycin (z-pack) because of a sinus infection. The doc took me off both and told me to tell people in the future that I was allergic to both, since we didn't know for sure which did it. Since it was my second transplant, and I had done well on azathioprine (my previous transplant lasted 18 years), they put me back on that. So I was on azathioprine, prednisone, and cyclosporine for awhile.

I ended up in the hospital at that time with CMV and blood clots in my legs. I was miserable!

[Romona]

Amanda, I' ll have to see if I can find my labs from that time period. I do know it was below the normal range. Now it is the low to middle end of normal.
I don't know what you were given before surgery to suppress you immune system, but some suppressants can cause your count to drop low months later.

[Roxy]

Hey Amanda, my WBC count just went down to 1.6 and since it's been staying pretty low they just lowered my cellcept to 500mg 3x/day. Also, they are having me go in and get an injection of Neupogen once a day for three days. I will let you know if it helps.

[Romona]

Hey Amanda, my WBC count just went down to 1.6 and since it's been staying pretty low they just lowered my cellcept to 500mg 3x/day. Also, they are having me go in and get an injection of Neupogen once a day for three days. I will let you know if it helps.

Roxy, that is what I was given to get my count up. It helped alot. I was very achy for a few hours after I got it each time. Like I told Amanda if you don't feel well at all get to an ER right away. Stay away from anyone that isn't well. Now I'm going to worry about you two.

[pelagia]

I was hoping there would be a thread on this topic within the hallowed halls of IHD and here it is!

Stephen's white blood cell count is going down.  It was 7 (x10^3/uL) in July, 3.6 in mid- August and 3.0 at the end of August. The lab gives the reference range as 4.0-10.5.  From what I have been reading, both Valcyte and CellCept can contribute to this.  He stopped the Valcyte mid-August, and they just cut his CellCept dose from 1 g 2x/day to 750 mg 2x/day as of last week.

Anyone know how quickly the WBC counts could come back up if the new dose isn't a problem and he doesn't get Neupogen?

We are going to be in Kansas for a music festival with 15,000 people 10 days from now .  That's a lot of germs...

[okarol]

The idea behind anti-rejection meds and transplants is to keep your immune system and your white blood cell counts reduced so that they don't attack the foreign object (kidney) and destroy it. It's a fine balance between keeping the patient adequately suppressed while maintaining enough immunity to fight off some bugs. What is "normal" for a patient's labs would be bad for a transplant patient. Jenna's WBC is always low, and the doc says for her that's good.

[pelagia]

So what levels are "normal" for a transplant recipient?  Stephen didn't seem to be having any problems when his numbers were within range.

Have other folks settled into a level that doesn't change much?

[Romona]

Keep a close eye on the count. Call the doctors if there are any symptoms at all. Fever, fatigue, chills. A low count is very dangerous. Mine is keep in normal range. Mine stays pretty contistant. It can drop pretty fast. Neupogen works fast. I don't know about counts coming up with out using it.

[pelagia]

He goes to neph tomorrow.  I will get him to ask about the neupogen as a possibility if the next labwork comes back lower.  thanks.

[okarol]

So what levels are "normal" for a transplant recipient? 

Good question. I would also like to know.
You inspired me to check Jenna's lab slips:
(NORMAL Range is 3.8 - 10.8 at her lab)
Aug. 2008   3.7
Jul. 2008    2.6
Apr. 2008    3.1
Mar. 2008   4.1
Jan. 2008   4.6
Dec. 2008   5.1
Oct. 2007   5.1
Sep. 2007   3.8
I will try to find out what they consider to be too low. She's had one cold since the transplant and that was 2 weeks ago. Luckily it was over very quickly.

[Romona]

I think that mine got to under 2.0.

[pelagia]

Actually they called today with the bloodwork he had done on Friday instead of today.  The WBC count has gone up to 3.6 again, so hopefully it will stay steady or even rise a little.