Aa
Aa
A
A
A
Close
1251333 tn?1445218215

first dose...done

Well, I got over my extreme fear and went ahead with the Gilenya.

I did not experience any significant drop of heart rate.

I have been experiencing mind numbing bone crushing ridiculous fatigue.  I've been taking the pill about 8:30 am.  The fatigue doesn't hit me until mid morning.  I go through a spell of dizziness/disorientation....I have some chest tightness/heaviness and then fatigue like you wouldn't believe!  It seems to affect me all day and even into the night.

I'll consider switching it to night time but since the fatigue doesn't hit immediately but then seems to affect me all day - I'm not sure switching to night is going to alleviate the excessive fatigue I've been feeling.


This is day...3 so, I'll be keeping a close eye on it and keeping my fingers crossed that the fatigue doesn't keep me feeling like I'm paralyzed.
5 Responses
Sort by: Helpful Oldest Newest
1745395 tn?1342061753
Hi, I wanted to add that  I did have a little dizziness but that went away fairly quickly.

Take care and Good luck.
Wildcat
Helpful - 0
1745395 tn?1342061753
Hello.  

I also had a little bit of a problem with Fatigue as well when I went on Gilenya.  The dr. did recommend that if fatigued I should switch to early evening but do it over a couple days (though most people on the gilenya facebook didn't they just switched to evening and it helped without problems.)  This may help you sleep like a rock lol.  (Also it seems to take a few days to a week after the switch for the fatigue to lesson.)

I have no problems with heart rate either.  My hair was falling out a little bit before I started but after about a month it is starting to fall out more rapidly (not in patches but thinning).  One of the suggestions is to use Nioxin, which I will be trying to see if it helps.  Alopecia (thinning hair/loss) can be a side effect of Gilenya.

Other than that I have been feeling good.

Good luck.

wildcat
Helpful - 0
1748105 tn?1314473206
I am not on Gilenya yet, just getting ready to start. But wanted to say that I hope the fatigue improves. Please keep us posted :-)

April
Helpful - 0
572651 tn?1530999357
Hi jifr, I'm sorry but I don't remember if you were on another dmd and it wasn't working, or if you just started out on Gilenya.  

We have only a few Gilenya users here so far, but I expect that number will grow.  I have no personal experience with this that I can share.  I hope your fatigue lessens and you begin to feel better.

Lulu
Helpful - 0
667078 tn?1316000935
I am glad you did not have a drop in heart rate. I have never been on Gilenya so I do not know what to tell you. I guess you just have to play with it.

Alex
Helpful - 0
Have an Answer?

You are reading content posted in the Multiple Sclerosis Community

Top Neurology Answerers
987762 tn?1671273328
Australia
5265383 tn?1669040108
ON
1756321 tn?1547095325
Queensland, Australia
1780921 tn?1499301793
Queen Creek, AZ
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease