Feel silly for asking this...

[angel22_99]

So, I'm kinda embarrassed to ask this because it shows that I am not taking charge of the situation... I have been on Gilenya for about 7 months now (no issues). Am I supposed to have some follow-up blood work or MRIs done or something? Does anyone know the protocol for such a thing? Should I ask my neuro to test me to see if I am JV +?

[Kimba22]

Hi angel22_99,

I hope you won't ever feel silly about asking a question here! You don't need a JCV blood test and it's up to your neuro to decide how often he/ she wants an MRI (as long as I'm not having problems, my neuro requests one once a year).

Now, on the bloodwork ... you DO need to get that checked! Gilenya can cause a drop in your wbc counts and set you up for an increase in infections. (Your neuro should've told you this and when he/she wanted bloodwork.) 7 months is too long, IMHO.

I got a UTI that quickly turned to sepsis and a heart infection while I was on it. I don't mean to scare you, but it's important you have your bloodwork monitored. So, please call your neuro.

I'd also suggest asking your dr. what his/her cut-off is for when low is too low. I was in a hospital where my MS Specialist wasn't on staff, and the neuro there kept me on the drug when my MS Specialist would've pulled me off it.

Best wishes,

[angel22_99]

Thanks so much. I'll call him on Monday.

It's been a year since my last MRI (*GASP* it's been a year since I have officially been diagnosed!), so I'll ask him about that when I call. I'm kinda mad that he didn't tell me about the blood work.

[Marco]

Hey Angel,
When you are first diagnosed or starting a new medication it's easy to miss testing requirements. Things get so hectic and overwhelming. The good new is your are going to get your blood work scheduled. I'm really glad you asked this question as it will help other patients in your situation.

When first starting Gilenya I would try to get blood work done every 6 months if things are normal. If things are abnormal your doctor may increase the frequency to quarterly or even more often depending on the deficiency level. If your blood looks good the first few times the testing frequency may be reduced, but initially it's very important to know how your body is responding to Gilenya.

If your neuro only wants to test every 12 months, see if your PCP/GP will do the testing as part of your annual physical. So if your neuro tests in January get your physical done near August and boom - you are tested every 6 months. Patients some times have to be crafty like that.
I wish you well ...

[newbie but goodie]

You also need to see an eye doctor at the 3-4 month mark to screen for macular edema (so soon and some neuros recommend a dermatological exam yearly.

Blood work is an absolute must and I agree with Kimba to find out your doctor's concern point and stop G point with your WBC counts. I didn't know that for a while so my bloodwork results just caused me a lot of stress. Someone on another post (maybe even Kimba recommended I call to get that info and it has really eased my mind.