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Gilenya process

I'm starting the transfer from Tysabri to Gilenya in the next few weeks. My neurologist ask me "where do I want to do my first dose at the cardiologist office or at home (The medicine company will pay to have someone come to your house to monitor you)"? Keep in mind that the first time you take the pill you've got to be monitored for 6 hours for heart rate. I told my neurologist that I didn't want to sound stuck-up but I didn't want a stranger in my house for 6 hours just sitting around looking at me, I'll go to the office and sit there and look at them😀😁. Since I've been diagnosed I'm just not a people person. My wife says I'm mean and I tell her I just don't like to try and make conversations. I know 6 hours is a long time sitting in a doctor office but I don't have to worry about entertaining (:. Just talking out loud. Thanks for listening😁.

5 Replies

Hi Royjr . I had my first Gilenya dose at the house. My medical person was an ER doctor. I didn't think I could physically stay at the dr's office that long. She was very pleasant, had her kindle along, and we talked only when I initiated conversations.

As an aside, the 6 hours turned into 7 3/4. If your heart rate isn't back up to where it started, they continue the process for up to 2 more hours. After that, they are prepared to send you to the ER.

Good luck and I hope you have the stamina to last that long at the Drs. office.


Royjr id do cardiologist too...that way where u need to b should something (unlikely 👍) happen.


Royjr why are they switching you? And are you sure you can handle being there that long? I would go stir crazy!😕😵 I wish you the best of luck with it though!


Ps. Talking out loud is always allowed here! We don't judge 😁😄


I didn't realize all that is involved with this drug. Praying all goes well Royjr. And mean? 😊 My husband doesn't say that, but we both know I am at the end of a tiring, bad day. That's when I excuse myself and have time-out. 😁


I tried Gilenya and did it at a facility. I did have BP & heart rate problems ; my BP plummeted to 60/40 and heart rate became low. Considering I felt fine, my low BP and heart rate was to scary. We tried it again and my BP would only stay at 80/60. So I didn’t stay on it. My husband and I watched movie in the facility with doctor and nurse monitor me. They didn’t know about the heart issues when I tried the medication. So how are you doing after one year?


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