Doing Well On Gilenya

[mdyogi]

I thought I would give everyone an update. I have now been on Gilenya straight through since February 1st. I did come off Gilenya in December and January over a panic regarding low CD4 count. My doctors were able to prove that while on it, it goes down and when I come off it for about 2 weeks the numbers go back up. Also, if I notice any infections to go to the primary care doctor right away. I did have a relapse when I came off the Gilenya.

I am doing well now, except for the recurring headaches, which the doctor says are related but are treated separately with triptans, nerve blocks and botox injections. So far, the botox is helping cut down my headache days per month.

I hope everyone is doing well out there.

[manderson]

Great to hear! I think it's important for those of us doing well on G to post good updates.

[cosake]

I too have been on Gilenya since February and I am doing well. My blood numbers are a little bit low, so we are just keeping an eye on them for now.

I was having shortness of breath over the summer that I attributed to a Gilenya side effect. Since the weather has cooled off, that side effect has virtually disappeared. The neuro did prescribe a ventolin inhaler to use in case I need it, but so far I haven't used it once.

I've had no flare ups since being on Gilenya.

[tombo131]

Great to hear both of you are doing well on it! I as well am doing great (started in Jan/Feb 2011), haven't had a relapse yet since starting it.

[akspbi81]

Doing great

I have been on G for more than 3 months and been doing great except minor headaches and hair loss. My side effects on rebif and tysarbri has been very severe so G is great. I actually feel energetic for the first time in years. More than anything, I don't have to poke any more needles and nothing beats that