CBC blood work

[pballer76]

WBC 2.45

Well my WBC has gone up a little bit to 2.45. I have been off gilenya for almost three weeks.
I just saw my neuro had he is sending me to the ms specialist again.
My neuro was talking about a possible return to tysabri, I'm jcv+ .47. Just had another blood draw for jcv.
I asked about staying on gilenya with a different dosing schedule.
I also asked about Rituxan.
My local neuro isn't going to make a decision, he's just sending me back to the specialist.
Is this how it usually works when a specialist is involved?

[Kimba22]

How long can I stay off gilenya before I have to be observed?

Hi pballer,

Generally speaking, two weeks. But, I guess it really depends on your doctor.

"Gilenya will stay in your body for up to 2 months after you stop taking it. Your white blood cell count (lymphocyte count) may also remain low during this time and the side effects described in this leaflet may still occur.

The initial effect on your heart rate may occur again if you stop taking Gilenya for 1 day or more during your first month of Gilenya treatment, or if you stop taking Gilenya for more than 2 weeks after your first month of Gilenya treatment.

If you restart Gilenya therapy after a break, your doctor may decide to monitor your heart rate and blood pressure every hour, to run ECGs, or to monitor you overnight."

http://www.news-medical.net/drugs/Gilenya.aspx

Best of luck to you and Temagami! Hope your blood counts get back and stay in acceptable ranges!

[pballer76]

2.27 WBC

I just got my lab work back.
It's 2.27 WBC. I can't talk to my neuro until Monday.
My neuro had me stop taking the gilenya for now.
1.95 was too low for my neuro. They didn't say if 2.27 was ok.
How long can I stay off gilenya before I have to be observed?

[Temagami]

Talked to neuro and he´s ok with a level of 2.2. So we´ll do another WBC in Sept. He did say that a recent viral infection could have lowered it and I was sick about 2.5 weeks ago.

[Temagami]

Please post an update- just got mine and it went back down- 220 (from the 400´s in the spring). I get an MRI in Oct. and want to stay on G if possible.

[pballer76]

1.95 WBC

Just had my blood drawn on Saturday and I'm at 1.95 WBC.
Neuro called and wants to have another CBC right now.
He mentioned trying another pill.
I have already been on Avonex, rebif, tysabri, tecfidera, copaxone & gilenya.
I would rather go to a different dosing schedule of gilenya.
Aubagio doesn't sound that great.
I think I will mention Rituxan.
I'm not sure what is next.

[bubbless]

I had blood work done every month for the first year I was on it... now it is every 6 months. My counts were low, but not lower that was to be expected.

[Temagami]

For a while I did the CBC every month as it was low- switched to a less frequent dosage and it stabilized.

[Kimba22]

Hi pballer,

The actual CBC number doesn't give the whole picture, and from what I understand, the absolute lymphocyte count is more important than the range. That would most likely explain why your neuro ordered another CBC.

Your risk of infections does increase with low lymphocyte counts. http://www.nhlbi.nih.gov/health/heal...cs/topics/lym/ What's too low for me may not be for you. Each neuro has a different cut off number they feel comfortable with, so something you may want to find out.

It really is a good thing your neuro is keeping a close eye on this. Your body might just need more time to adjust to the medication. He/ she may decide to put you on a different treatment schedule, such as every other day. All worth it if it keeps you from getting a serious infection.

When I was on Gilenya, something as seemingly innocent as a UTI went septic. The sepsis then led to a heart infection. It all happened very quickly.

Keep us posted and best of luck ,

[pballer76]

I have been on Gilenya for four months.
On 6/21 I had a CBC and my white count was 2.08.
Now my neuro just ordered another CBC.
I have not spoken with the neuro, I just received the lab work order in the mail.
Do you think this is just routine blood work?
I really want to stay on Gilenya. I haven't had any infections. Is 2.08 too low?
All of my lymphocyte counts are within range but the absolute lymphocytes is low.