Search found 66 matches

by lmacalus
Sat Mar 12, 2016 10:12 am
Forum: Gilenya
Topic: Day #.... Highlights of the first few days
Replies: 40
Views: 16106

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...
by lmacalus
Fri Oct 05, 2012 8:55 pm
Forum: General Discussion
Topic: Ayurvedic treatment of MS
Replies: 15
Views: 5490

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!
by lmacalus
Mon Dec 19, 2011 11:27 am
Forum: Gilenya
Topic: Actual details on reduced Lymphocytes count?
Replies: 3
Views: 2129

Re: Actual details on reduced Lymphocytes count?

Have you tried calling Novartis & asking them? Could it be contained in the PI?
by lmacalus
Sun Jul 24, 2011 4:57 pm
Forum: Gilenya
Topic: Humble reminder
Replies: 11
Views: 3637

check-ou the 6-mo MRI results - posted under separate subject: 6-month...
Blessings,
Laura
by lmacalus
Sun Jul 24, 2011 4:53 pm
Forum: Gilenya
Topic: 6-month MRI is complete
Replies: 3
Views: 2353

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 bit (easily mana...
by lmacalus
Sun Jul 24, 2011 4:47 pm
Forum: Gilenya
Topic: First Dose
Replies: 1
Views: 1757

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 ;)
by lmacalus
Sat Jul 09, 2011 6:34 am
Forum: Gilenya
Topic: Humble reminder
Replies: 11
Views: 3637

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, headache reso...
by lmacalus
Wed Jul 06, 2011 4:46 pm
Forum: Gilenya
Topic: Humble reminder
Replies: 11
Views: 3637

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!
:oops:
by lmacalus
Wed Jun 29, 2011 8:33 am
Forum: Gilenya
Topic: Humble reminder
Replies: 11
Views: 3637

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 past mo...
by lmacalus
Wed Jun 29, 2011 8:25 am
Forum: Gilenya
Topic: Humble reminder
Replies: 11
Views: 3637

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...
by lmacalus
Mon Jun 06, 2011 3:32 pm
Forum: Gilenya
Topic: Day #.... Highlights of the first few days
Replies: 40
Views: 16106

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/gram ...
by lmacalus
Mon Jun 06, 2011 3:10 pm
Forum: Gilenya
Topic: Day #.... Highlights of the first few days
Replies: 40
Views: 16106

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 cellulitis - a...
by lmacalus
Sat Apr 23, 2011 4:14 pm
Forum: Gilenya
Topic: Day #.... Highlights of the first few days
Replies: 40
Views: 16106

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 :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
by lmacalus
Wed Apr 20, 2011 9:24 am
Forum: Gilenya
Topic: Day #.... Highlights of the first few days
Replies: 40
Views: 16106

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 this incredible ...
by lmacalus
Tue Apr 19, 2011 7:07 am
Forum: Gilenya
Topic: Day #.... Highlights of the first few days
Replies: 40
Views: 16106

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 me an...

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