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In Category: Treatments
Discussion:
Gilenya & Elevated Liver Enzymes
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If there are any fellow gilenya users out there, I have a question. I've only been on gilenya for four weeks now. My blood tests are starting to show slightly elevated liver enzyme levels. So far its fairly mild so they're just monitoring the levels closely. Has anyone else had this happen? At what level did your doctor pull you off?
Posted on 12/07/10, 01:02 pm
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Reminder: This is a support group for Multiple Sclerosis (MS). We trust you will do your best to remain positive and helpful. For more information, see our rules of the road.

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Reply #1 - 01/16/11  11:55am
" My husband is getting ready to start Gilenya. He use to be on Betaseron but is switching to the Gilenya. I am afraid of the side effects that come with it so any issues you have could you feel me in on and if you really like it could you help me there too?

Thank you
Tracy "
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Reply #2 - 01/16/11  3:08pm
" Not a problem. I'm very happy on Gilenya, but I completely understand about being scared about the side effects and it being a new drug. Aside from the liver enzyme issue, I have not had any adverse side effects. For me gilenya is more or less like taking a vitamin and so I love that part. The only real down side is that your immune system is intentionally tanked, so you have to really protect yourself from getting sick, etc. Once you do catch something (for me a cold), well don't expect it to go away any time soon.

About 8% of the time, people get heightened liver enzyme levels. Half the time this resolves itself within about 5 weeks (this is what happened with me) and the other half of the time you'll need to get pulled off the drug. Only half of the time after people are pulled off the drug will they need further intervention to sort out the liver enzyme issues.

The big scare side effects are of course macular edema (eye issues) and heart issues. Both of these side effects occur in less than 1% of cases. I'm also on another site with a lot of active gilenya posters and I have yet to meet a single person who has had an issue with either macular edema or the heart issues. I'm the only one who had liver enzyme issues.

Hope this helps. If you ever have any questions feel free to send me a message, etc. Also, if you'd like to see a more representative sampling of people on Gilenya and there experiences, go over to msworld.org. They have a section for treatments with a subsection of people who are on Gilenya. You can see the experiences of a lot of different people. "
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Reply #3 - 01/16/11  8:30pm
" You can take Milk Thistle everyday to help your liver function. It has been shown to improve liver function in clinical trials. I take it everyday because I am on Avonex, which can also raise your liver enzyme levels. My levels are great so far.

There are some trials listed here on Wikipedia: http://en.wikipedia.org/wiki/Milk_t... if you're interested. "
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Reply #4 - 02/23/11  8:08am
" My brother started this drug 3 weeks ago. He had to saty at the hospital for 8 hours to make sure his heart rate and pressure did drop out on him.
He was nerveus about taking it but LOVED the thought of no neddles.
His hreat rate droped a little and they say that normal. the only down fall is the immune system, he has to be a gremaphobe about everthing. But is fun busting his balls about it.

As far as liver enzymes he didn't say anything to me about it but Im going to give him the 4th degree about it.lol "
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Reply #5 - 03/21/11  6:55pm
" I do not have MS, but I know of a wonderful blog about this new oral drug. Please check out Kathy's blog about her AMAZING experience (miraculous is more like it) with Gilenya. She has been on it since 3-1-2011 and had had MS for 25+ yrs. Her reaction to this drug is inspirational. I pray she keeps improving by leaps and bounds.
http://gilenya-girl.blogspot.com/ "

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