I was wondering for all of those on Gilenya how are you liking it? My wife starts on Monday. We have read all of the info out there but haven't had any feedback from a real persons point of view.
Thanks,
Walter
Thanks,
Walter
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I'm newly diagnosed and have never been on any other MS med before so I have nothing to compare it to. However, it's absolutely no different than taking my fish oil and vitamin d in the morning.
The only bad parts are that 6 hour waiting period after the initial dose and the blood work afterwards (I don't like needles). My husband came with me for the first dose just to keep my company and also went out and brought us back breakfast and lunch, etc. I'd told him the entire time prior that this was unnecessary and completely moronic. Afterwards, I couldn't thank him enough.
Make sure your wife dresses comfortably and brings lots of entertainment for that first visit.
I'm really happy with my decision to go on Gilenya. Obviously its easy to take. The only side effect I've had to date is an increase in my liver enzyme levels but my neuro is monitoring with blood draws.
Hope your wife likes the gilenya as well! -
I'm hoping all goes well because there aren't many things left to try. She was on Avonex for around 7 years and all was good until the last year when she started having some serious arthritis from it. She then tried Copaxone that caused several reactions. The last one was Betaseron and that caused some severe facial swelling.
Originally posted by Just a small town girl View PostComment
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I am scheduled for Wed morning.. I am hearing really good things about it. Now to try it for myself.
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Thinking.....
I am thinking about Gilenya.
I have to admit I am scared about the macular edema. I don't want to loose any vision. Anyone else worried about this or am I just over the top?
CrazyCatLady
MS Does Not Define Me.....My Love of Tea Does! LOL!
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It is my understanding according to the eye dr I was referred to it happens in less than 2 percent of the cases and if caught early
It causes no problems they check eyes every 3 months and you will need to report any vision changes immediatly. I think I read where hair loss is a bigger side effect......It just is not a serious one................I have already had a lot of that one
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I was initially really freaked out by the thought of macular edema. My most serious symptom so far has been ON. However, my neuro also explained to me that this happened in very very few cases (0.4% of patients). This is not enough of a percentage of patients to even show a statistical correlation between the drug and the problem.
Additionally, your neuro will order an eye exam before and 3-4 months after. Macular edema should strike in the first 4 months if it's going to. All of the symptoms normally go away as soon as you stop taking Gilenya. My neuro has only scheduled the one eye exam and has just advised me that if weird stuff happens with my eyes, I should see my eye doc or neuro-opthamologist right away.
I can completely understand being worried about if. But at least for me as soon as I heard the percentage was 0.4% I was okay.
This is a hard decision to make, it's a new drug and that's scary. Just do what feels right and that'll be the right thing.
Hope everything works out! Keep us posted!Comment
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