Been on Gilenya for 3 weeks

Gilenya, or Fingolimod, is the first approved oral disease modifying drug for MS.

Been on Gilenya for 3 weeks

Postby sophie447 » Wed Oct 16, 2013 6:54 pm

After debating it for what seemed forever, I finally decided to do it! Figured Gilenya is an acceptable option right now. Far from perfect, but still acceptable. Worrying about side effects (increased risk of cancer and liver problems, even PML) will probably never go away, but my mind is made up for now. Will follow closely reports of adverse effects and reevaluate each time. Just have to remind myself that it is not a forever choice.

First dose observation went OK, although the effect on my heart rate was very present. It took everything, I mean running up 4 flights of stairs to barely get it over 60, so that they would let me leave at the end of the day!! It is still not back to normal, but hopefully will be soon.

Swallowing a pill a day certainly is less of a bother than injecting. However if something better even in the form of injection comes along, I will consider it.
sophie447
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Re: Been on Gilenya for 3 weeks

Postby Theresaa » Sat Dec 14, 2013 9:32 am

Hi

I have been on Gillenya 2 wks feeling really tired wondering how you are doing after 3 wks

Thks

Theresa
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Re: Been on Gilenya for 3 weeks

Postby sophie447 » Sun Dec 29, 2013 7:30 pm

Hi Theresa,

sorry I missed your post! No, I can't say I feel more tired than before the Gilenya. For me, the effects still are on my heart rate and blood pressure. Gilenya has elevated my blood pressure as it has always been very nice before, even quite low at times. This bugs me quite a bit and I will try to see my GP soon.

Hope your tiredness is resolving by now.
sophie447
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Joined: Fri Aug 03, 2012 6:09 am


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