Gilenya (fingolimod) the First Oral Pill to Treat MS - My Personal Experience (Part 2)

It has been a good three weeks since I swallowed my first dose of Gilenya. I would like to update my readers about what has happened since I started "G" and how I have been feeling.

First, starting with the most important question, what side effects have I had? Surprisingly, I have experienced very few side effects. I keep on waiting for something really bad to occur, but so far so good. I would have to say the occasional head-aches is the most notable problem. Even that side effect is miniscule compared to the side effects I suffered when I added a new blood pressure medication.

I was afraid that if any dizziness occurred it would be very severe since I am already prone to that particular symptom, but again I was surprised as my occasional dizziness was comparable to normal sinus or mold dizziness.

When I was under observation I felt very cold when my heart rate would decrease, but since that first dose the coldness has not returned.

Gilenya arrives in a small package containing 28 pills.
Gilenya arrives in a small package containing 28 pills.

Fatigue

My number one concern is fatigue. It is my constant reminder that I live with Multiple Sclerosis. I can say with absolute certainty that if I were not weighed down by this crippling fatigue, even I would be hard-pressed to remember I have an autoimmune disease.

In reality though, the fatigue does exist and it is a minute-by-minute reminder that I have been served a full portion of MS.

So have I felt any improvement in my energy? I hesitate to say I have, but I do think my fatigue-load has been lightened these past two weeks. Understanding my circumstances will help you to see why I can't be positive yet.

Packing Moving and Waiting

I am writing this update from a hotel room that has become our temporary house since the beginning of October. We packed up our belongings and with the help of friends moved them to a temporary location at a Delaware storage unit. We are across town waiting to close on our new home. As is the case with anyone waiting for a home, we are anxious and excited at the same time. The weather has delayed our progress more than once and the pollen and mold levels had taken a toll on my already exhausted body.

Still I have been very surprised that I have not had to spend more than a couple of days a week resting up. Is it the Gilenya? is it the Gilenya coupled with the Prozac? Perhaps both drugs combined have helped me. Prozac while very helpful in the beginning has proved less and less effective over time. To enhance its effectiveness I have been using Prozac more sparingly. Of course moving to a new location calls for as much energy as can be mustered so I have been using Prozac regularly since the end of September.

Once we are settled I plan to concentrate on using just the Gilenya in order to determine how helpful it is for my fatigue.

Taking Medications with Gilenya

I wondered what effect taking my other medications and Gilenya would have. So far I haven't noticed any problems associated with combining so many pills. I take medication for high blood pressure, diabetes, and high cholesterol. I also take Lyrica for nerve pain. I was informed by the doctor that I could take Gilenya on an empty stomach. In my instance it hasn't bothered me to do so, but my personal preference is to eat in the morning when I take it.

Gilenya also has not interrupted my sleeping habits. I take Gilenya in the morning and my regular sleeping aide at night without any noticeable changes in my ability to fall asleep.

Delivery and Billing of Gilenya

After the initial two-week supply is used, the pharmacy begins sending the drug to your home. I was worried about this since by the time I finished my initial supply I would be in transit. The pharmacy informed me they would be happy to send it directly to my hotel. It arrived right on time and the front desk of our hotel gave me a call when it arrived via UPS. Once I am settled the Gilenya will be delivered to my new home address.

BILLING

I'm still not quite sure of the billing procedure. As far as I understand it, my insurance carrier has agreed to cover Gilenya except for a co-pay of fifty dollars. As for who pays the co-pay it appears Gilenya will cover it. It was totally explained to me but I must confess I was too distracted to remember what was said. I told my husband that we may be responsible for the co-pay, but as of this writing we haven't received any type of payment due notice. The price of a monthly supply of Gilenya is $800.00.


The 3 Month Update

After taking Gilenya for 3 months, I am to be examined again by my neurologist and by ophthalmologist. That will be a good time to update my progress as sufficient time will have passed to better evaluate Gilenya.

I suppose no news will be good news until that update. Of course if I develop any new symptoms or problems I will make sure to update before the 3-month time period.

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2 comments

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Jen's Solitude 4 years ago from Delaware Author

Hi GarnetBird, let me know if your friend wants to give Gilenya a try. I think it is actually helping with my fatigue. :)


GarnetBird profile image

GarnetBird 4 years ago from Northern California

Wow--thank you for writing this--I am going to tell my bestfriend of 40 years about this medication. She has had MS for over 15 years now..great hub.

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