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So Your Doctor Recommended Gilenya…

Yesterday was my first dose observation for Gilenya. After striking out on Copaxone and Rebif I’m hoping Gilenya and I can have a long, drama free, healthy relationship! And I thought I would use my experiences yesterday to segue into todays blog topic…Gilenya!

Gilenya is an oral MS drug (no more shots for this girl!) and after discussions with my Neuro we decided that it was the best medication for me to try next. As everyone with MS knows, each drug has it’s own set of unique and wonderful side effects. For Gilenya these include:

1. Bradycardia

2. Macular Edema

3. Immunosuppression

4. Increased Liver Enzymes

5. Fetal harm

6. Respiratory side effects

Before your doctor will let you start on Gilenya we require a 12 lead EKG, eye exam (preferably by a neuro-opthomologist), and blood work. I am going to go through each of these one-by-one and explain why we do these tests, and what we are looking for. I feel that this is especially important because as a Nurse I often have frustrated patients call the office saying they don’t have time to get all of these tests and exams, and they don’t understand why we won’t allow them to start the medication until they do. Hopefully after this all of you will understand the hoops we make you jump through!

Gilenya can cause bradycardia (slow heart rate) or a slowing of the electrical conduction through the heart which causes a heart block. We look at your 12 lead EKG to make sure you do not already have bradycardia or a heart block before giving you Gilenya. If you do have either of these, or a significant history of other heart disease, Gilenya is most likely not the medication for you.

The decrease in heart rate seen with Gilenya usually occurs within 6 hours of the first dose, which is why you go for the first dose observation. All this means is you take your first pill in an ER/urgent care center and sit around for 6 hours while they monitor your heart rate and blood pressure every 30 minutes.

They also do another 12 lead EKG before you take the pill, and 6 hours after before sending you home. If everything looks ok during those first 6 hours studies have shown that it is safe to continue Gilenya. Most people have a slight slowing of their heart rate, which normalizes after one month of treatment.

Another note: don’t forget to take your medicine and don’t let your prescription run out! If you go two weeks or more without it then you have to go back for another “first” dose observation!

Eye Exam

Within the first few months of taking Gilenya a small portion of study patients experienced something called macular edema. Macular edema is a condition that is most often associated with diabetes and it causes blurred vision. Some people may have mild macular edema and not realize it which is why we send you to an eye doctor to make sure you are not one of those people! After starting Gilenya you will also be required to follow up with the eye doctor in 3-4 months.

The question I am asked most often is if having a history of optic neuritis increases your risk for macular edema. The answer is no! The optic nerve and the macula are different parts of the eye. MS attacks the optic nerve because it’s a nerve, and therefore part of your nervous system. The macula is not a nerve and is inside your eye so vascular diseases such as diabetes can damage it, but MS does not. You can see in the illustration below how the optic nerve leaves the back of the eye and enters the brain, whereas the macula sits inside the back of the eye.

If you do experience new vision changes on Gilenya you will have another eye exam. If the doctor thinks you have macular edema then you will simply stop taking the Gilenya and the edema should resolve without any additional treatment.

Blood Work

We are looking for a couple of different things in your blood work. First we want to make sure your liver is working normally because the liver is responsible for breaking down and eliminating Gilenya. Secondly we want to check your immune system since Gilenya suppresses it. Gilenya works by decreasing the number of immune cells, called lymphocytes, that get released into your bloodstream. These cells are thought to contribute to MS damage, and suppressing the immune system has been shown to slow or prevent damage done by MS. We want to make sure you have a strong immune system that can tolerate being suppressed a little bit, and that you are already immune to the chicken pox. We check for this because weakening the immune system in someone without immunity to the chicken pox could lead to a shingles outbreak- ouch!

What other questions do you guys have??

Site content is not intended to be a substitute for professional medical treatment or guidance. Always consult a healthcare provider before making medical decisions.

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