So I went on Gilenya about 2 months ago (after my white blood cell counts crashed on the interferons and after testing positive for the JC virus).
My neuro's office called me about a few weeks ago to tell me that they have noticed that several of their patients on Gilenya have had dangerously low t-cell counts and they wanted all of their patients on it to be tested immediately and then monthly after that.
I went in to have my blood tested - the next day my doctor called back saying that my t-cell count came back at 13.
"Normal" is anywhere between 1500-500. At below 200 HIV patients are put on medications to up their immune system. Below 20 is considered "critical". So at 13 my doctor was shocked. 
She had me go and get my blood drawn again to make sure it wasn't a lab error and pulled me off the Gilenya immediately. 
The next test (which I took 3 days later because it was over a weekend - so I'd been off the Gilenya for 3 days) came back at 16. I talked to my neuros NP that day and she said out of 28 patients they have on Gilenya, they have gotten 20 results from the tests back and ALL of them have tested under the 200 danger zone for t-cells, most of them were in the 50-100 range, I took the cake, lucky me, when I tested at 13.
They are taking everyone who tests low on their t-cells off of Gilenya and trying to discuss these t-cell levels with AIDS and HIV doctors to find out what the danger is to their patients, because that is basically what is happening to these patients put on Gilenya - they're getting an artificial AIDS-like reaction.
The good news is that the t-cells seem to bounce back pretty quickly. The NP told me that when they've pulled patients off of it their blood work 2 weeks out have all tested over 200, so whatever the damage is it seems to go back to normal fairly quickly.
I was discussing it all with the NP when she called. She told me that in the Gilenya studies only 17% of patients had a dangerously low t-cell count happen, and so far their 20 out of 20 patients reporting back dangerously low is obviously not jiving with those numbers. My doctor is speculating that they pulled those who this happened to out of the study quickly and only kept those in the study who were able to keep up their t-cell count.
So here's a bit of a warning to those on Gilenya - call your doctor and get a CD4 blood count done! We knew our immune system would be lowered on this medication, but I don't think any of us thought it would be killed off almost entirely.
My neuro's office called me about a few weeks ago to tell me that they have noticed that several of their patients on Gilenya have had dangerously low t-cell counts and they wanted all of their patients on it to be tested immediately and then monthly after that.
I went in to have my blood tested - the next day my doctor called back saying that my t-cell count came back at 13.
"Normal" is anywhere between 1500-500. At below 200 HIV patients are put on medications to up their immune system. Below 20 is considered "critical". So at 13 my doctor was shocked. She had me go and get my blood drawn again to make sure it wasn't a lab error and pulled me off the Gilenya immediately. The next test (which I took 3 days later because it was over a weekend - so I'd been off the Gilenya for 3 days) came back at 16. I talked to my neuros NP that day and she said out of 28 patients they have on Gilenya, they have gotten 20 results from the tests back and ALL of them have tested under the 200 danger zone for t-cells, most of them were in the 50-100 range, I took the cake, lucky me, when I tested at 13.
They are taking everyone who tests low on their t-cells off of Gilenya and trying to discuss these t-cell levels with AIDS and HIV doctors to find out what the danger is to their patients, because that is basically what is happening to these patients put on Gilenya - they're getting an artificial AIDS-like reaction. The good news is that the t-cells seem to bounce back pretty quickly. The NP told me that when they've pulled patients off of it their blood work 2 weeks out have all tested over 200, so whatever the damage is it seems to go back to normal fairly quickly.
I was discussing it all with the NP when she called. She told me that in the Gilenya studies only 17% of patients had a dangerously low t-cell count happen, and so far their 20 out of 20 patients reporting back dangerously low is obviously not jiving with those numbers. My doctor is speculating that they pulled those who this happened to out of the study quickly and only kept those in the study who were able to keep up their t-cell count.
So here's a bit of a warning to those on Gilenya - call your doctor and get a CD4 blood count done! We knew our immune system would be lowered on this medication, but I don't think any of us thought it would be killed off almost entirely.
And, yes, it is SO important to get regular blood work done when on any MS medication, especially something as new as Gilenya.
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