Finally

[cljones]

They finally got an observation date for me. I will go November 6 for the 6 hour observation. It seems like forever that I have been waiting to try Gilenya .I hope it stops the progression I have been experiencing. I will have too go to Memphis which is 2 hours away. My husband had to take the day off to take me. That means one day less on his paycheck. Medicare really sucks. If it wasn't for that I could have done it at home. But that is life. At least I have hope that it will work. I went to an MS dinner and learned that even if you don't have relapses your meds are not working if you have progression. I did not know that. So I have real hope that this new DMT will help. Keep positive thoughts.

[jimeka]

cljones this is new to me. What do they observe for 6 hours? Would you mind explaining please. I hope it all goes well for you, at least it sounds as though your husband is being supportive if he has taken a day off without pay. Blessings Jimeka 🦋 🌈

[cljones in reply to jimeka]

@jimeka They have to watch your blood pressure to make sure it doesn't drop to low. They also do hourly ekg to check your heart. The med can cause problems so they observe you for 6 hours to make sure you can handle the meds. Yes my husband is very supportive. He is truly a blessing.

[jimeka in reply to cljones]

Thank you. It all sounds very reassuring. Hope it goes well, blessings Jimeka 🦋 🌈 👍

[erash]

Wishing the best for you cljones

[Jesmcd2 CommunityAmbassador]

I wish you the best of luck!💕 cljones 6 is my lucky number so I hope it is for you also!😊

Let us know how it goes!

J 🌠👻

[Morllyn]

Luck and good wishes coming your way cljones !🤞

[greaterexp]

You’ll sure be in our thoughts and prayers as you begin this new DMT. Please let us know how it went!

[Brindisi1]

Prayers , and hope all stays normal.

[Brindisi1]

Prayers and hope all signs stay normal

[Cwacker]

Hi cljones, I've been on Gilenya for 11 months. The 6 hour observation went fine and I had no side effects. And I've been tolerating it well. The disappointment is that my disease is still slowly progressing although no new lesions on my brain, c-spine or lumbar area. My neuro said the meds are in fact working since I have no new lesions, but this is the "normal" progression for secondary progressive ms. Which I'm guessing is different than what you were told at the dinner, if I understood you.That really took me for a surprise when my neuro told me that, I figured the gilenya wasn't working and that I would switch meds, I broke down and cried. But I'm now going to PT and this is supposed to help with my wobble and eye/brain problems. I hope all goes well with you!

[cljones in reply to Cwacker]

@Cwacker I am hopeful but I know I still may progress. I just hope it helps. Trying to keep positive.