any gilenya users
 

I am nervous about starting this drug because its so new.

I have been trying to read peoples experiences but have not found much. Can anyone here share their experiences. The proccess of starting and any side effects if any you mighy have experienced. The Gilenya nurses wont talk to you until u r enrolled and i cant do that till may. I have to b off the tysabri for 3 months. I guess its to soon to know if you all feel it is working for you. .

Thanks
laurie f

I am not on it but waiting for answers from those who are.

Good luck Laura..:hug::hug:

MS clinic
 

When I went to my neuro last month and we talked about it, he said that he would have to refer me the ms clinic at northwestern if I was interested in it. The first pill has to be administered under a DR.'s supervision. That scares the daylights out of me. I am taking the wait and see approach. I am curious about other people's experience with it.

I am curious too. My neuro told me when i had an appointment in November that he wanted me to consider it. I see him again in June. I am hesitant to try it at this point since I have experienced so many problems with meds and treatments.

I am hoping the process is quick. I got my eys checed and am getting the EKG Thurs then will get blood end of April and hopefully start the end of May.

I heard in just 5 short months over 10,000 people are on this drug and i can't get people to share their experiences and Gillenya support wont talk to you until you are enrolled but since i was on Ty i cant go straight on Gilenya.

Sorry but i am frustrated becuse i have questions i wanted answered before i started the drug and cant get answered or people to share their experiences.

laurie f

Laurie, just tell them you refuse to start until you get answers. It's your body and you are not their ginea pig.:mad:

Actually after reading up on it, I wouldn't touch it with a 10 ft pole, due to adverse side effects.:eek: But, I wouldn't do TYsabri past 2 yrs either, because of the dangers of PML.:eek:

There is a facebook forum for people on Gilenya or those considering it. It's open to the public. Just type in "gilenya support group" on facebook. There are lots of people talking about side effects.

Oh wait, I suppose I can just paste it for you! :D

http://www.facebook.com/group.php?gi...6888138&v=wall

Read comments on this wall and also make sure you click on the "discussions" tab at the top.

Anyhow, I found it very informative.

Laurie, Nat's link is great...it should answer many of your questions. There's even a discussion of those leaving Tysabri and starting Gilenya.:hug:

Just wanted to say thanks i have been reading on the facebook site. Sally i told Gilenya support i wanted answers to some things before i started they told me talk to my Dr. Tryed his nurse says i am his first patient but she will try to get answers fro the drug rep. Lets see when i hear back.

Thanks
laurie f

Hi! I saw your post and thought I should give you some information.

My appt. with my neuro was Nov. 3rd, 2010, and that's when I made the decision to stop Copaxone and switch to Gilenya. I had 4 relapses last year that were treated with steroids each time, so I figured it was time to change DMD's.

I actually started Gilenya on January 6th. That's how long it took to get all the testing completed, the starter pack of meds shipped to my neuro, and get the 6 hour appt.

My neuro monitored my blood pressure and heart rate himself during the six hour trial period. Everything went just fine.

I have had problems with copay assistance and my insurance, though. I've had to make many calls to get them to clear my balance. I was getting pretty frustrated because it was affecting my ability to order other medications. This week, it was finally taken care of.

Having patience with Gilenya support is important. Sometimes the nurse navigators do not return phone messages, so you have to be persistant. Once they assign you to one, if they don't help, ask for someone else to assist you.

I've had few side effects since starting, but none too serious. The first couple of weeks I had a little dizziness, and I was extremely fatigued. I'm still getting over an upper respiratory infection, bronchitis and sinus infection which came out of nowhere.

My neuro said he believes it is from the Gilenya and is keeping a close eye on what is happening. After a few rounds of antibiotics and some other symptom meds, I am feeling much better.

My latest bloodwork showed extremely low lymphocyte counts. Gilenya is supposed to do this. My neuro was not concerned at the levels and I just received my second shipment.

I really hope things hold steady for awhile because I do not want to go back to doing the injections.

Is there anything specific you want to know?