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

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

Week 12...BIG week of testing in progress!

Postby lmacalus » Tue Apr 19, 2011 8:07 am

Sill feeling well.
The heat in the next 90 degree round did get to me... just left me a little fatigued and with an awful headache - so 2 alleve & a nice early bed time was in order and left me feeling FINE the next morning which was good b/c my husband was leaving on a biz trip so it was just me and the 4 yr old and well, the house, the dogs, etc - we did just fine.

Also went to the dentist last week - routine stuff but dentist gave me a large dose of antibiotic first so that it would be available in my system should any bugs from the cleaning etc enter my system...no complications.

The tests are all being rerun this week!
1) Eye MD - went yesterday. Had GREAT app. My vision has actually IMPROVED! Told the MD about what I was taking & how long & what I had been noticing with my vision being better with a reduced contact lense RX.
Asked him i it was possible that G was preventing the MS from attacking this nerve so it was healing?

He indicated the following
* he could not determine this as he is an Eye MD & not a neuro.
* both optic nerves presented as pink and healthy with the left only slightly paler than the right (previously the left was dramatically paler than the right and the right had started to show sings damage too)
* I was accurate in that my current RX was in 12 weeks time the WORNG Rx and I am now in new lenses wit the Rx that is weaker (just a few diopters but in both eyes)
* Still NO signs of macular edema which is what we were there to check for so I am cleared from the Ocular perspective to stay on G.

2) MRI - is TODAY! I had 7 new active lesions when I stared taking G so I am anxious to see what the new films show. As always I'll pop the CD in the computer when I get home but I am no radiologist so I'll have to hold out for my MD to call me with the details.

3) Dermatologist screening is all OK - unless I notice something new or changed I do not go back for a year

4) no need for a physical therapy evaluation at this time either as gait etc are all functioning normally w/o the need of assistive devices. So the canes are a bit dusty and the walker can STAY ON THE GARAGE WALL!!! :o)

Will post more on MRI results and the blood work I still need to get completed soon!

Have a blessed week,
L
User avatar
lmacalus
Family Member
 
Posts: 65
Joined: Sun Apr 05, 2009 3:00 pm

Advertisement

:)

Postby leetz » Tue Apr 19, 2011 6:10 pm

GRRRRRREEEEEEAAAAAAATTTTTTTTTT!!!! Thank's for the update!
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
User avatar
leetz
Family Elder
 
Posts: 294
Joined: Tue Oct 06, 2009 3:00 pm

The 3 MONTHS MRI RESULTS

Postby lmacalus » Wed Apr 20, 2011 10:24 am

my 3-month MRI was yesterday & was AWESOME ... 3 months ago (pre-G) 7 NEW lesions - 3 months later on G lesions are mostly smaller with a few that were "just" stable!!!!! This is my first GODD MRI ever and this was diagnosed 10 years ago next week! All praise to the Higher power for this incredible blessing :)


PS Wow an actual MRI that reflects how much better I've been feeling and the wonderful improvement in my vision, etc!
User avatar
lmacalus
Family Member
 
Posts: 65
Joined: Sun Apr 05, 2009 3:00 pm

Postby leetz » Sat Apr 23, 2011 5:00 pm

imacalus...

please do continue to tell God bless you!
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
User avatar
leetz
Family Elder
 
Posts: 294
Joined: Tue Oct 06, 2009 3:00 pm

spelling it all out...

Postby lmacalus » Sat Apr 23, 2011 5:14 pm

so what really made this great MRI - was this is the first one in 10 yrs showing NO NEW ACTIVITY & NO ACTIVE LESIONS :O)
Still taking my pill, gotta go for some blood work still - will do that this week.
Happy Easter to all - He is Risen!
L
User avatar
lmacalus
Family Member
 
Posts: 65
Joined: Sun Apr 05, 2009 3:00 pm

Postby lyndacarol » Sun Apr 24, 2011 9:13 am

He is risen indeed!
User avatar
lyndacarol
Family Elder
 
Posts: 2268
Joined: Thu Dec 22, 2005 4:00 pm

Postby Algis » Sat Jun 04, 2011 11:16 pm

Any further news lmacalus?
User avatar
Algis
Family Elder
 
Posts: 783
Joined: Sat Nov 21, 2009 4:00 pm
Location: XinDian, Taiwan

Quick update - In month 5 now!

Postby lmacalus » Mon Jun 06, 2011 4:10 pm

Wow that went fast & I am still feeling well for the most part. Braved a hot bath an well - it was DEVINE :o) I came out clean & not exhausted - sweet! On the scary side however my boday's impaired immune system was very efficient at converting a torn nail/cuitcle into a rough case of cellulitis - all in 24 hrs - OUCH, quite painful & tip back to the GP who prescribed a high does of Kflex for 10 days - it's resolved in 5 but I need to finish to RX and per my MD... if it gets worst or you develop either red streaks or a fever go immediately to the hospital (yup that was scary) But it is resolved nicely, no more pain, swelling, etc. Lesson learned: be VERY careful with even the slightest cut, etc.
Next MRI in a month... looking forward to that too... will post the results when they are in.
Eye sight remains on-spot with the weaker RX, heat is not bothering me nearly as much and I am making nice progress with P.T. now - core is rebuilding, muscles are stabilizing & strengthening, no more gait issues, no nerve pain or restriction - able to stretch fully etc.
Bladder/bowel function back to normal, appetite normal, weight coming under control. Phew, if this keeps up I may have to start cleaning my own house again (LOL)!
User avatar
lmacalus
Family Member
 
Posts: 65
Joined: Sun Apr 05, 2009 3:00 pm

Doing the math now...

Postby lmacalus » Mon Jun 06, 2011 4:32 pm

Since deciding to start Gilenya.... reliance on & use of pulse/emergency steroids have been GREATLY reduced for me...
Previously - 2-5 IVs per month (2-5 grams total)
Decision to start = 2 months no steroids
5 months on Gilenya = 1 single gram (1 day in 5 months)
For a whopping total of 1 dose/gram over the past 7 month now!!!!

Had I continued w/o G I would have had a minimum (assuming on 2 days/month) of 14 grams of solumedrol....
Instead with Gilenya I required 1 gram

check my math but I believe that's 93% reduction on steroids!!!!!!!!!!!!!!!!
(I believe I may actually make it through this lifetime with my original hips :o)

Blessings, Laura
User avatar
lmacalus
Family Member
 
Posts: 65
Joined: Sun Apr 05, 2009 3:00 pm

Postby Algis » Tue Jun 07, 2011 1:24 am

Thanks Laura; glad you do so well :)
User avatar
Algis
Family Elder
 
Posts: 783
Joined: Sat Nov 21, 2009 4:00 pm
Location: XinDian, Taiwan

Previous

Return to Gilenya

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service