Absolute Lymph counts

[atlawson]

Has anyone received the lab results yet?

After 1st month of Gilenya my blood counts are good except for my absolute lymph was 0.5! (reference is 0.7 to 4.4)

How are everyone else's counts so far?

[goldnurse1]

Gilenya 1st dose 2/17/10

What did your doc say about 0.5? I start tomorrow, currently I am at 2.4 hope you feel okay

[atlawson]

I started Gilenya on 12/14/10 before that I was on Copaxone and before that was Betaseron. I had labs done 1 month after starting in January. Yesterday was my first Dr. visit since the lab results. After we got the results we talked to the nurse and he said that my Dr. said it was o.k. and that we would discuss at my appointment yesterday.

Yesterday we discussed the absolute count and he said that 0.5 was o.k. and even if it reached 0.2 would not warrant him stopping the medication. He said if my next lab (in a month from now) is lower that he would just monitor me more than usual. Also on this lab he is doing a CD4 count to get a better understanding of the absolute count.

Also he said since this is a drug induced level that he wasn't concerned about as much as if I had a disease causing the low level.

We did schedule a MRI in April to check if it is working. If it isn't I am considering a clinical trial with Campath.

[Just a small town girl]

I actually just got a call on this today. I've been on Gilenya for 3 months, but now my lymphocyte count is 200.

My neuro is pulling me off Gilenya for a week and then retesting my blood. If my lymphocyte count goes back up then they'll put me back on the drug. (I'm guessing if I go back on then they'll also either keep my blood draws at once a month or once every two weeks. I was just getting ready to transition to once every three months.)

Has anyone else had this happen? If it resolved after the brief rest, did it reoccur?

[atlawson]

My doctor said even if my lymph count reaches 200 he wouldn't take me off of the medicine. He said he would monitor me more often, but since this is a drug induced lymph count he wasn't overly worried. If it was a disease caused count then he definitely would stop at that point.

[Jalee]

I've been on Gilenya since Jan. 6th. I just got an upper respiratory infection along with bronchitis.

On Sunday, my lymph. count was 198. Yesterday, it had fallen to 168. When my neuro called with the results, I think he said my overall white count was in normal range.

Since I have been sick all week, he's going to check it again in two weeks. It didn't say anything about me stopping the med.

[BasketCase]

Taking Gilenya every other day

I began taking Gilenya in early November. I had my blood work done at the end of February and it had my doctor alarmed although he said he noticed this with other patients too. He asked me to begin taking Gilenya every other day, rather than daily and I will be repeating my blood work in a month.

Both of my liver tests (AST and ALT) were elevated. ALT was at 105, with the normal range between 10-40.

Lymph absolute was at 0.3%, with the normal range between 0.6-4.9%

CD4 Absolute was 50, with the normal range between 800-1200. CDC considers anyone with CD4 under 200 to be infected with AIDS. It's unlikely that my spouse or I am infected with HIV and this is simply a side effect of Gilenya.

Oddly, I've been unusually healthy this winter season.

[Just a small town girl]

So after my week long hiatus, my lymphocyte count is back within the normal range. I'm resuming medication and will get retested in another two weeks. Here's hoping they count just levels off this time.