Starting Gilenya tomorrow!

[stephc10]

I am starting Gilenya in my doctor's office tomorrow. Rebif and Avonex just haven't stopped me from having relapses. I've also been on 3 1/2 years of solumedrol so I'm glad to get off of that. I'm very nervous-any side effects that are very scary? I know about the slowed heart rate-just wondering what others have experienced. I have two young boys so I have to be on my toes!

[Just a small town girl]

You already know about the one that scares most people. The other biggies are macular edema (think something that's a lot like ON) and elevated liver enzymes. There's also the general concerns about sickness that come as part and parcel of intentionally tanking your immune system.

I had the liver enzyme issue and never would have known except for my neuro's office calling me. It went away on its own (which happens about half the time). But it sure scared me for about 4 weeks or so. Mostly I was just worried they'd pull me off the drug.

I've also had a death cold / bronchitis for a good long while, but c'est la vie.

I hope your first dose goes well. Dress comfy, bring something to drown out the waiting room noise and a variety of entertainment options.

Let us know how your first dose goes!!

[CrazyCatLady]

Excited for you!!!
Let us know how it goes and try not to worry too much. I know, easier said then done.

[stephc10]

went well

My first dose went really well-just a slight slowing of the heart but I've had no other side effects. I'm so hopeful that this will help me-nothing else has=( Glad to see the positive comments out there!

[Cindarelly]

3 people started it the same day and it went just fine for all of us.. I bet your going to be just fine. Its a long 6 hrs .. take a good book and or a lot of reading material.
Crossword puzzles and stuff like that.
Snacks too.

[Just a small town girl]

I'm glad to hear that your first dose went well. Hopefully you won't have any other side effects!

[Cindarelly]

That is good news, thanks for dropping by to share.. hopefully its all uphill..

[CrazyCatLady]

Keep us posted on how you are doing??

[stephc10]

I'm doing fine-no side effects. I have increased energy which is great. The spasticity in my legs is back full force though so I'm worried. I had a minor relapse about 2 months ago that I received IV solumedrol for and then I improved so now I don't know if I'm having more issues from that or could it be the Gilenya? Has anyone gotten worse before they get better? It's just the spasticity-don't know what is going on!