Anyone taking Gilenya/Fingolimod? 20 questions...

Thanks!!! I intend to as well as some music, my computer (they apparently have wifi at the facility), and some food.

Hi!

I started gilenya last year after taking rebif for 10 years and had two relapses and numerous “silent” relapses as per my MRI results while on rebif.

1). I was really nervous to start a new drug, particularly due to the stated potential side effect of macular edema (anything to do with your eyes is always scary!). However, even though there is always a risk involved with taking a new med, there is a big risk in doing nothing as well! But I was happy to switch as my Rebif was no longer as effective and after YEARS of self-injections I was SO happy to be moving to a pill! If you are feeling nervous I would suggest talking to your doctor/nurse or if there is a nurse who works for the drug company to ask any questions. And take others’ stories online with a grain of salt - its easy to be psyched out when reading horror stories but everyone is different and sometimes you get people who are uninformed posting.

  1. Symptoms I experienced on my first dose.
  • Bradycardia. A regular heart rate is between 60-100 beats per minute for an adult, and my pulse was typically around 65 prior to starting Gilenya (so low-normal). My heart rate went down into the 50’s. But be aware that they EXPECT your heart rate to drop. What you want to be aware of is any symptoms you have due to this drop (ex. dizzy, headache, fainting etc.) and let the nurse know who is administering your first dose. What they are concerned with is if your heart rate drops dramatically and you are experiencing serious symptoms.

  • Diarrhea. I got diarrhea right off the bat after my first dose. My bowel movements have really never been the same ever since! They are looser and have still not returned to normal. Taking metamucil has helped, but follow your doctors suggestion. Drink plenty of water and eat a healthy diet. I would NOT say this impacts my life to any extent that I would not want to take Gilenya. It’s just something I’m aware of and has been manageable for me, although not the most glamorous.

  • Headaches. I am not prone to headaches and I did have a mild headache on my first dose and the next few days after until my body adjusted. Take it easy for a couple days after your first dose and take some over the counter meds to help you out otherwise. This did not last long for me and I would not say it was anything that hinders my life.

3). Side effects that have lasted

  • Diarrhea/losse stool. As stated above

  • bradycardia. Especially for a few weeks after my first dose I felt a bit “whoozy” and tired due to the lowering of my heart rate. Therefore in the beginning I had to be careful with exercising and things like that. My heart rate has stayed lower than it was prior to taking Gilenya, but again, I don’t find it unmanageable. I continue to feel lightheaded if I am not hydrated and stand up to fast. But i want to articulate that I would NOT say it is any inference to my life! Having a huge bout of bradycardia to the point that they need to hospitalise you on your first dose is extremely rare (in fact, the nurse I was with told me he had never seen it and has been doing first dose gilenya for years).

  1. Macular Edema is rare and again, the optometrist who did the testing in my area said he had never seen it from gilenya - I had no issues. Make sure you are getting regular check ups with your eye care professional.

  2. I have gotten sick more often the past winter. However, the cold virus was quite relentless this past season so whether that was due to the gilenya or due to the virus itself is unclear. You should already be more cautious about infections just due to having MS, but take a few extra ones (wash your hands more frequently, don’t stand by people hacking out a lung etc.). The particular immune cells that being targeted by Gilenya are such a small percentage of your functioning immune system that taking Gilenya by no means makes it necessary to live in a bubble.

  3. Yes, my doctor was happy with my past MRI. I have not had another relapse since I first started Gilenya, so for me that is a happy win! But everyone has a different experience with medications or MS in general, so please follow your doctors reccomendations.

Hope this answers some questions! I have been really happy taking Gilenya even though I was nervous in the beginning. There are some very serious POTENTIAL side effects (ex. PML), but there is also very serious potential side effects of taking Tylenol. Careful not to let your ‘worrying mind’ take over your whole mind!

Autumn

Wow. Thank you for such a thorough response!!!

The first dose went well. It started with a EKG then the nurse took my blood pressure and pulse every 30 minutes. My heart rate did drop, but not into any dangerous zone, so I just had a quiet day.

Since then, my blood pressure has been lower than usual and sometimes I’m so very tired. Again, not in the danger zone and not unexpected.

Everything else seems to be fine. For this I am oh so grateful!!! Of course, I remain diligent. It’s only been a few days.

I go to the ophthalmologist all the time anyway because I’m a type 1 diabetic. That’s how the MS was diagnosed in the first place!

You’re right, Autumn, about the worrying mind thing. MS is hard for your mental health. I had a pretty rough couple of months, but I’ve made a conscious decision to be better. Joining a forum like this is a step in the right direction for me. For a while I struggled with whether or not to tell anyone outside of my immediate circle. I’ve recently decided that was stupid. I joined an MS Walk and put out a call on Facebook for support and have received nothing but! It’s really good for the soul.

Another question…I’m so new to this, I’m not sure what a relapse is. Like what happens? I KNOW everyone is different, but what kinds of things are we talking about. You said you had some silent relapses. I guess that’s where all of my lesions have come from, right? Because other than the eye pain (optic neuritis) that I would have blown off if not for being diabetic, I have no idea. Will I know? did you know? Again, people hesitate to answer this because what happens to them isn’t necessarily going to happen to me, but I’d like some anecdotes. And yes, I will ask my doc the same thing…I have an appointment in a few weeks.

Again thank you for your very thorough response. Have a great day!

Danielle

Hi new to this forum I have been on gilenya for two years now feel much better was on Avonex The only issue I have with gilenya is it has made me suffer with terrible constipation.At my wit’s end with it trying anything, does anyone else suffer with it while being on gilenya.

Hi, I am new to the forum. I have been on Copaxone, then Plegridy, but due to two relapses in the last twelve months and a new spinal cord lesion I am due to start Gilenya at the end of January. Like others have said I am a bit nervous as to what to expect, so to read some of the positive experiences here has really helped. Only problem is that at my checks a couple of weeks ago they found my blood pressure was high. Since the it has been on average elevated to high…I thought that Gilenya increased your blood pressure slightly, which wouldn’t be good for me, but someone said that their blood pressure dropped …anyone know which is to be expected…?

thanks your response gives a positive experience of flingomilod Im hoping to go on to this med from tysiabri as to reduce PML risk.