Day #.... Highlights of the first few days

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

Day #.... Highlights of the first few days

Postby lmacalus » Wed Feb 02, 2011 4:09 pm

So day one - whew, LONG wait in MD waiting room. Took first dose at nearby cardiologist office. Staff great & kind & NO ill effects. heart rate, BP & EKG all the same at 6 hrs as when I walked in. Was still suffering from fatigue after 6 hrs of sitting but happy to move a bit and had some dinner & went to bed.
Day 2: woke and felt RESTED!!!!! Hadn't felt that in a LONG time but fatigue-free has been the vibe of the day. So the laundry is getting finished & I may even try to watch a movie tonight :o)
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Postby lmacalus » Thu Feb 03, 2011 1:38 pm

Day 3 - woke with a sinus infection - BOO Hiss! Saw MD. Uncertian if it is bacterial or viral - very low grade fever 99.9. Ruled out FLU & Strep - All good there. Knew this could happen just didn't expect it so fast. Regardless took my pill anyway - body feels great, feels like I am normal & have no MS - just a crummy sinus funk.
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Postby lmacalus » Fri Feb 04, 2011 3:21 pm

Day 4 - started antibiotics (amoxicillin 500MG 3X/day for 10 days) to help boot the sinus "funk" but otherwise feeling well. Have noticed my appetite is down, energy is still up so the fatigue seems to be history. Other good things - despite sinus funk - both pupils remain = in size and r reacting normally, muscles are fine and neither painful no spastic. I am still tickled that I could see a result this positive & this fast and with NO IV's or injections! Never though I'd say this but I am actually looking forward to my next MRI - in a few months I believe.
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Day 5

Postby lmacalus » Sat Feb 05, 2011 8:14 am

OK, I think we finally found the right drug to manage my MS! :o)
1 pill a day = so easy to take. It hasn't given me any icky side effects. So one sinus infection ok It's been completely responsive to the antibiotic. And I am STILL waking up feeling refreshed and ready to take on the day! I should note both my husband and daughter have the same infection so it was likely gonna come my way regardless of how much cleaning we do... the gelinya did NOT cause this, just made it a bit harder to fight it.
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Postby scorpion » Sat Feb 05, 2011 8:28 am

Appreciate your updates. Please continue to let us know how you do on this drug!
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Postby LR1234 » Sat Feb 05, 2011 8:50 am

me too....hope you continue to do well....
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Postby Drury » Sat Feb 05, 2011 6:08 pm

Thank you for giving us regular updates. I agree to not have to have injections or infusions is heaven.

My daughter is due her 10th Tysabri infusion and frankly I hate that she is on that med.

Do keep us posted and wishing you well with continued improvements.

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Day 6

Postby lmacalus » Sun Feb 06, 2011 1:17 pm

Can't believe it's been nearly a week! Also can't believe how much I've accomplished this week! Still am not experiencing any symptoms from the med or from my MS. Best I can put it is I feel normal again... can even enjoy a hot shower in the morning without being wiped out from the hot water :o)
In chatting with other Gilenya patients I have realized that not everyone is having the same rapid positive result but at the same time we recognize we are different people with different lesions and amounts of inflammation and the med much like others does not appear to be titrated to patient size or specifics so we'll all sit tight knowing that clinical results were not initially published till 3 & 6 months respectively and we'll see how we are feeling and how our MRI's present in those time frames.
Oh yeah I almost forgot, the sinus infection is clearing nicely. Enjoy the Superbowl!
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wrapping up week 1 today.

Postby lmacalus » Mon Feb 07, 2011 8:50 am

Am noticing that despite the energy boost (aka absence of fatigue) I am still needing to pace myself. Spent Superbowl sunday on my feet, cooking, etc and was pretty wiped out. No resulting issues his am tho. So all's good and the sinus funk is nearing over so in another day or 2 I am excited to feel MS free & have a clear head!
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week 2

Postby lmacalus » Wed Feb 09, 2011 10:55 am

still going strong
:D

Novartis coming through with copay assistance so this will no longer be $100/day - Very cool!

Gilenya support group on Facebook is also a GREAT area to speak with folks who like me are on the drug or are interested and want to know more. It's neat to be able to answer questions, get mine answered and more. Interesting the history of Gilenya is also posted there - pretty interesting reading if anyone is interested... go to your facebook page and under fins type in Gilenya support group - it's that easy!
Wishing everyone strength and a "good day" today :lol:
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Postby Drury » Thu Feb 10, 2011 3:34 pm

Really happy you are doing so well. Keep posting.

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still going!

Postby lmacalus » Thu Feb 10, 2011 3:45 pm

MS symptoms still... wait, what MS symptoms?! Nothing is giving me trouble! Sinus infection cleared, sleeping well and normal hours. Have taken up some brain teasers to exercise the thing some and am thinking I need to start getting back on the treadmill again. Will give it a spin tomorrow and let ya know how it goes :D
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Postby lmacalus » Fri Feb 11, 2011 3:54 pm

so CRAZY BUSY day, errands (plus some) were all run, daughter's ballet class and we're still going. No time for the treadmill thus far but there hasn't exactly been anytime for sitting around either! Still have holiday cupcakes to bake for school on Monday. Phew! Still feeling pretty good (no noticeable symptoms or side effects :) and wishing everyone a restful and enjoyable weekend.
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First MS -ish symptom since I started this...

Postby lmacalus » Sun Feb 13, 2011 4:51 pm

So last night out of the blue I had that stabbing Trigeminal (SP) nerve pain in my right jaw thru ear. It wasn't the worst ever (A.k.a. It did not drop me to my knees as it has before) and it was over after maybe 2 seconds. It was the one shot kind of things as it has not repeated or returned. No other symptoms so things are still going very well. I did however learn that my mother wast taken to & admitted into the local hospital at about 4 am today - so we'll see how I continue to do on this drug with the added stress! Actually, both parents were treated this am for unrelated items in the ED my father was released on Morphine & in a wheelchair for pain from his back condition & my mother admitted with pneumonia. This should be an interesting week. Sadly I cannot visit or be near my mother now that I have compromised my immune system so I will do my best to care for them from afar and see how my health continues to hold up.
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Postby Lyon » Sun Feb 13, 2011 4:54 pm

I'm happy to hear that things seem to be going so well and sorry to hear about the stressors.
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