Starting Gilenya soon

Gilenya, or Fingolimod, is the first approved oral disease modifying drug for MS.

Starting Gilenya soon

Postby pballer76 » Sun Jan 05, 2014 11:48 am

I have been on Avonex, Rebif, Tysabri, Tecfidera & Copaxone. I am currently on Copaxone. I can't wait to start Gilenya. The lumps and itching drives me crazy.
I am still waiting to have my EKG, eye exam and blood work. I am going to get three ekg's. Is this standard? My neuro wants an EKG, blood work and the eye exam before filling out the paperwork and sending in to Novartis.
This seems like it will take a while before my first dose.
Is there a washout period from Copaxone?
How long did it take most people to get on the medicine after deciding they wanted Gilenya?
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Re: Starting Gilenya soon

Postby sophie447 » Mon Jan 06, 2014 4:52 pm

Hello Pballer 76 and welcome.

Do I ever understand your complaint about bumps, lumps and itches related to Copaxone!

As far as my experience goes, it took about a month to get everything done (blood tests, ECG, eye exam) and be ready to start Gilenya. After that, all that was needed was booking an appointment for the first dose observation. However, even tough there is no true wash out period after Copaxone, I personally had to wait a full month after my last dose of Copaxone and the first dose of Gilenya because I am included in a study that requires 30 days off any DMD and I had not quit immediately.

To sum it up, almost 2 months total between decision and first dose.

I don't know for sure why you had to have 3 ECG, maybe with different machines as they needed to minutely check your heart and make sure your are not likely to run into problems.

Hope you get it all organized soon and good luck to you. See you around here soon.
Sophie
Last edited by sophie447 on Tue Jan 07, 2014 7:25 pm, edited 1 time in total.
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Re: Starting Gilenya soon

Postby CureOrBust » Tue Jan 07, 2014 4:20 am

pballer76 wrote:The lumps and itching drives me crazy.
I have had no real side effects I can attribute specifically to Gylenia. Maybe a tiny bit of chest congestion when I first started it, but that could of been me looking out hard for side-effects. The really weird thing is that even though the risk of cold/flu's are supposedly increased, I can't really say I have had one since starting. Although I do use Amantadine and Tamiflu at the slightest tickle, as my trigger for a relapse is a cold/flu. I think I did get the eye exam before the day by a random optometrist.

pballer76 wrote:I am still waiting to have my EKG, eye exam and blood work. I am going to get three ekg's. Is this standard? My neuro wants an EKG, blood work and the eye exam before filling out the paperwork and sending in to Novartis.
This seems like it will take a while before my first dose.
I may of had a blood test that I dont remember before the day of getting my first dose. my memory, is that I came in early (ie around 9am) into the hospital (where the ms clinic is, its a teaching hospital). They took a LOT of different tubes of blood. I then had an EKG, and then only a few hours later, I was given my first dose under observation. I had to stay there for around 4 hours. I think I had a very minor slowdown of heart rate on one measurement, but it was well within normal, and returned on the next measurement. So as far as I can tell, after I was designated to start, I started on the first day the hospital was doing the observation day, and had all my blood and EKG tested on the day. They did have the benefit of being part of the hospital so had access to all its abilities to process the tests.

pballer76 wrote: Is there a washout period from Copaxone?
I have never been on Coopaxone, and had quit Rebif many years before. So I cant help answering this question.
pballer76 wrote: How long did it take most people to get on the medicine after deciding they wanted Gilenya?
I think it was simply down to when they had an opening for the day of observation for the first dose. I am pretty sure they did all the blood tests (a LOT of different vials) on the day, and they definitely did the EKG on the day. So maybe just an eye test any day before the first dose day.
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Re: Starting Gilenya soon

Postby pballer76 » Sat Mar 22, 2014 9:44 am

Well I started on 3/17, it was a boring 6 hours.
My heart rate fell from 95 to 63. It was up to 83 when I left six hours later. So far I haven't really noticed any side effects. Maybe a small headache but I think it is sinus related. I have had a sore lower back since starting but I think it's more posture related than anything.
I just need to fill the month prescription before the two week supply runs out.
I do appreciate the Gilenya GO program as I have a $0 co-pay.
I have a neuro appt, blood work, & eye exam in three months. My last MRI was on November 13. Hopefully I won't have another one before November 14.
If I develop low lymphocytes what is done about it?
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