Gilenya experiences wanted!

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.

Reader Question

This morning I received an email from a reader. I was really torn with how to respond, but with Nilaja's help, I think I'm ready to respond. Here's what they wrote (I hope this is OK, name withheld):

Hi Chris,

Thank you for sharing your experiences with us. I've been reading for a while. I know you are not working and short on money and with the recent hospital stay I'm sure your worried about getting those bills in the mail. I was wondering if you would consider accepting donations from readers. You could put a donation box on the website and if people want to help with bills or send you gifts they can do it in a safe way. What do you think?

Well, my first reaction was thank you, but I can't. I've always had a hard time accepting help in any form and even though my income is small and fixed, I'll figure out a way to manage. But the truth is, I am hardly managing right now. In my entire adult life, I have never had this much worry over bills and with my disease still being so out of control, I'm not sure when things will change. My "I hope to be working by" date continues to be pushed back (it's not August anymore). I'm currently praying that the hospital bills come after the wedding so that the stress won't disrupt my day. (I am also trying to figure out how to pay for all the new prescriptions, equipment, and supplies that the doctors/specialists think I need.)

I am truly and completely humbled and grateful that anyone, even a stranger who knows me only through the words that I post here, would want to offer help. I wish I had more to offer in return, more to give you as a thank you. Just know that I feel blessed at even the thought and any donations will help relieve the burden and stress that paying for my care has caused. Thank you thank you thank you.

I'm bored

I come to you today asking for help, I need things to do. Currently, I get up early in the morning, try to nap (always unsuccessfully), clean, watch lots of tv, maybe take a shower, eat 2 or 3 times, and go to bed. I'm starting to worry that my brain is going to mush and after what I spent for college, I can't let that happen. But I'm running low on ideas.

So I'm asking you, dear readers, for ideas. I currently watch an insane amount of tv, so things like movies or tv shows are not what I'm looking for. I also don't have much money, so ideas shouldn't cost much (unless you are willing to sponsor me and I'll gladly provide my PayPal address) or have elaborate setups (we don't have any storage space in this apartment). We are pretty close to Laney College and I'm thinking about taking a ceramics or cooking class, but am a little worried about logistics and timing. I'm also open to book recommendations, websites, and community programs.

Thanks in advance for all the suggestions!

Free For All Fridays. Ask me anything!

For the past few hours I've been trying to figure out something to write about. I am completely blank. I've received many requests for more frequent updating and I think I've found a way to remedy that. I've decided on a new theme for Fridays. Every Friday, I'll make a post like this one and you can ask me whatever you want (within reason**)! Just comment below and I will make a post over the weekend to answer all the questions. You can comment anonymously or logged in. Ideally, your questions will be MS related, but if you want to know more about my life, I'll be happy to share. So, start commenting!



**Obviously, I'm not going to give out personal information like my address or phone number! I have to keep my family safe.