on G for 14 months now

[metwo]

I've been taking Gilenya for the past 14 months. I had one relapse 3 months after starting. I have not developed macular edema, infections, heart problems or had any abnormal liver tests. My cbc comes back as expected when taking this medicine (it lowers one of the white blood cell counts, that is how it works). This summer heat doesn't seem to be kicking me as badly as it did in 2011 but I am still very heat intolerant. I have a much better quality of life compared to my Avonex days. I am glad I switched. I'm looking forward to my next mri this fall. I'll let you know how it looks.

[kirbylynn]

I've been on Gilenya for 10 months now and I was having a flare when I started Gilenya and am still having that flare because my Dr. refuses to treat it with steroids because he says it's too small. I quote "It would be like killing a fly with a bullet" I called him yesterday to insist that he give me some form of steroids either oral or IV and was told that unless I had yet another MRI done he wouldn't give me any steroids. Well I've already done 2 MRI's since June 2011 that show that small amount of activity that I mentioned. Basically he dropped me or forced my hand to where I have to drop him. I can't afford the co-pays for all the MRI's he wants to read. Especially because he doesn't do anything to stop the activity that the MRI's are showing.

Good Luck with the Gilenya, I hope your bloodwork continues to come back looking good and that nothing happens to your vision forcing you to stop taking it.

I am also happy to be on it. I haven't ever been on any other MS meds so I don't have anything to compare it to. So far so good.

[laurasari]

I think it's time for you to find another dr. You shouldn't be suffering from a flare for 10 months and 3mris injustice ove 1year is alot my dr. Thankfully doesn't do M r I s often. Doesn't feel they are necessary. Good luck

[kirbylynn]

I'm going by my Dr's office today to have all my records sent to my new Dr. My new Dr. is an MS specialist so I'm hoping that will mean less MRI's. Thanks for replying that was very kind of you.

[metwo]

no change in MRI

I've been taking Gilenya for the past 14 months. I had one relapse 3 months after starting. I have not developed macular edema, infections, heart problems or had any abnormal liver tests. My cbc comes back as expected when taking this medicine (it lowers one of the white blood cell counts, that is how it works). This summer heat doesn't seem to be kicking me as badly as it did in 2011 but I am still very heat intolerant. I have a much better quality of life compared to my Avonex days. I am glad I switched. I'm looking forward to my next mri this fall. I'll let you know how it looks.

Update 10/8/12 - Had my MRI and it has not changed!!! 12 months of stability

[Temagami]

There´s a "woot woot!" Thanks for sharing your good news.