Search found 66 matches
- Sat Mar 12, 2016 10:12 am
- Forum: Gilenya
- Topic: Day #.... Highlights of the first few days
- Replies: 40
- Views: 35919
Year #6!!!!
Still on G, YEARS later. For the past 5 years, I have enjoyed beating the expectation of the reduction in relapses and quite frankly being steroid-free for the last 4. Recent documentation on the risk of PML led to a JC Virus test in November. Results re positive so I am at risk. Both my husband and...
- Fri Oct 05, 2012 8:55 pm
- Forum: General Discussion
- Topic: Ayurvedic treatment of MS
- Replies: 15
- Views: 7409
Re: Ayurvedic treatment of MS
Employ these Ayurvedic principles daily- mostly diet & herbs. I feel sooo much better but no am not cured. Feeling healthier is huge tho!
- Mon Dec 19, 2011 11:27 am
- Forum: Gilenya
- Topic: Actual details on reduced Lymphocytes count?
- Replies: 3
- Views: 2919
Re: Actual details on reduced Lymphocytes count?
Have you tried calling Novartis & asking them? Could it be contained in the PI?
- Sun Jul 24, 2011 4:57 pm
- Forum: Gilenya
- Topic: Humble reminder
- Replies: 11
- Views: 5108
- Sun Jul 24, 2011 4:53 pm
- Forum: Gilenya
- Topic: 6-month MRI is complete
- Replies: 3
- Views: 3234
6-month MRI is complete
AND THE MRI SHOWED NO NEW LESIONS & NO ACTIVE OLD STUFF!!!! SOOOOO GREAT TO BE IN REMISSION & STABLE THANK YOU JESUS & THANK YOU GILENYA :) next MRI in 6 mos (for my 1 year Anniversary) Symptoms really not apparent, strength good & building, heat sensitvity reduced but still there a ...
- Sun Jul 24, 2011 4:47 pm
- Forum: Gilenya
- Topic: First Dose
- Replies: 1
- Views: 2317
Hang in there - this took a while fore me too
Eventually the Neuro & Support team at Novartis located a cardiologist who was willing & authorized. Hang in there friend - it is well worth the wait ;)
- Sat Jul 09, 2011 6:34 am
- Forum: Gilenya
- Topic: Humble reminder
- Replies: 11
- Views: 5108
Heat tolerance increased but not fully eliminated.
Kso Solumedrol dose 2 (2nd single gram) orally yesterday - doing too much in the heat so calming it down - well as calm as a girl can be on solumedrol :? Same effect tho - took my nasty "drink" yesterday, went to bed at a decent hour & this am the pain throughout my right side is gone,...
- Wed Jul 06, 2011 4:46 pm
- Forum: Gilenya
- Topic: Humble reminder
- Replies: 11
- Views: 5108
So a hot shower is one thing...
...but a string of really HOT days is still miserable. Find I need to stay indoors with AC still. Noticed my legs just don't want to move as quickly as I'd like. So G or not - I do remain sluggish in really hot wather.
Keep cool everyone!

Keep cool everyone!

- Wed Jun 29, 2011 8:33 am
- Forum: Gilenya
- Topic: Humble reminder
- Replies: 11
- Views: 5108
Quick Update - In month 6 now!
Still doing really well, am cleaning my own home (killjoy!) and the heat is not hurting me anymore...Yes I still feel hot on hot days but it is no longer like the energy & strength is being zapped out of me. Have survived Disney, California Adventure, Sea World & Lego land with the kids this...
- Wed Jun 29, 2011 8:25 am
- Forum: Gilenya
- Topic: Humble reminder
- Replies: 11
- Views: 5108
just saw this one!
Actually, steriods used as a pulse to contain a flare seems to be fine as that what was used in the trials and by my MD as well. For me it took a single gram of solumedrol which worked completely in 24 hrs. Not bad. My no-profession understanding is that while they both seem to supress the system th...
- Mon Jun 06, 2011 3:32 pm
- Forum: Gilenya
- Topic: Day #.... Highlights of the first few days
- Replies: 40
- Views: 35919
Doing the math now...
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/g...
- Mon Jun 06, 2011 3:10 pm
- Forum: Gilenya
- Topic: Day #.... Highlights of the first few days
- Replies: 40
- Views: 35919
Quick update - In month 5 now!
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 cellul...
- Sat Apr 23, 2011 4:14 pm
- Forum: Gilenya
- Topic: Day #.... Highlights of the first few days
- Replies: 40
- Views: 35919
spelling it all out...
so what really made this great MRI - was this is the first one in 10 yrs showing NO NEW ACTIVITY & NO ACTIVE LESIONS 
Still taking my pill, gotta go for some blood work still - will do that this week.
Happy Easter to all - He is Risen!
L

Still taking my pill, gotta go for some blood work still - will do that this week.
Happy Easter to all - He is Risen!
L
- Wed Apr 20, 2011 9:24 am
- Forum: Gilenya
- Topic: Day #.... Highlights of the first few days
- Replies: 40
- Views: 35919
The 3 MONTHS MRI RESULTS
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 th...
- Tue Apr 19, 2011 7:07 am
- Forum: Gilenya
- Topic: Day #.... Highlights of the first few days
- Replies: 40
- Views: 35919
Week 12...BIG week of testing in progress!
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 m...