Early this morning I received the following comment on my “Gilenya: Day 00” post from azcharli:
“I started Gelenya on December 19th. The very first 6 hour observation ended with me waking up in the ER with a heart rate of 34. The hospital wanted to keep me overnight for observation. As luck would have it my heart rate went up to 57 just in time for the nurse to tell the doctor and get me discharged. As soon as he saw it I unplugged the monitor and I was out of there.
My heart rate is still in the 40's and 50's.
Anyway 2 days later I had to go back to the ER with blood red eyes and terrible eye pain, oh and the horrible headaches. Not 1 person including my Neurologists assitant have ever heard of Gelenya. Needless to say they had to call poison control to find out about it.
I have been back twice with severe eye pain and headaches. The hospital told me it has nothing to do with Gelenya and sent me home. I just got back again tonight with the same thing. Severe eye pain when i look to one side or another which in turn makes my head pound. Once again they say it has nothing to with the drug. Bull... I have had MS for 17 years and have never had this before. I am curious to see how many others are in my situation. Honestly, I would rather be blind than go through one more day of pain and suffering.
Signed, Scared in Arizona.”
First, a disclaimer: I am not a doctor (and I don’t even play one on TV). The information that I share here is based upon my personal experiences as a patient and should be considered anecdotal. Before trying any recommendation or following any advice offered on this blog (by me or commenters) please discuss it with a medical professional who is fully aware of your medical history.
Sue, I am so sorry you are having this experience. MS is tough enough; we shouldn’t have to deal with all the medication-induced side-effects as well. OR have to put up with medical professionals who are unfamiliar with the drug but are certain that it is not what’s making you sick.
When I read this, my initial thought was that you have optic neuritis. Usually when I have optic neuritis I have excruciating pain whenever I move my eyes and I rub them so much that they get bloodshot. I also get a terrible headache from all the eye pain/stress. But I would suspect that after 17 years you would have had optic neuritis and know how it presents. If you’ve never had it (lucky you), that could be what’s going on. My neuro treats with IV steroids and it resolves.
Outside of that, I have never heard of anyone having this cluster of symptoms or this experience with Gilenya. BUT I know that doesn’t mean much when it comes to MS, side-effects, and drug interactions. And because Gilenya has been on the market for such a short time, I’m sure there are a lot of things that are still unknown about the drug. Frankly, we know that Gilenya can damage our vision, so I don’t understand why it is so far-fetched that it could cause eye pain!
I would suggest having your doctor call Novartis and inquire about your symptoms. It seems that with most drugs there are symptoms that are so rare that they don’t have to report them on the information sheets. With a simple phone call from a medical professional, the drug company will let you know if this is a side-effect of the drug. It is also good to share this information with them (especially with new medications) so they can keep record of the various side-effects. Who knows, maybe your experience isn’t so unique after all.
I’m gonna link to this post on my Twitter, Facebook, and Google+ accounts. I invite everyone to share their experiences with Gilenya in the comments. Just remember that these drugs work differently for each person, so check with your doctor before making any health-related decisions.