Humble reminder

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

Humble reminder

Postby lmacalus » Sun Mar 13, 2011 10:03 am

Humble reminder that this while doing great things IS NOT A CURE!!!
I DO feel a MILLION times better but for the past 2 days have had a couple of old altered sensation symptoms "flare up" in my arms & legs, not enough to hurt, but enough to slow me down, be VERY annoying & put me back on a pulse steroid for a couple of days. Not a big deal, but a bit of a BUMMER to have to step on the brake some. I will say tho, when directed by my nero to keep taking the med it is MUCH easier to swallow a pill than to suffer through a shot so I am still 100% compliant & awaiting the 3 month benchmark :o)

Figured this was the place to be BRUTALLY HONEST :o)
Love & Peace to all,
Laura
User avatar
lmacalus
Family Member
 
Posts: 65
Joined: Sun Apr 05, 2009 3:00 pm

Advertisement

Double humble reminder

Postby Smilingface » Mon Mar 14, 2011 7:06 pm

I agree. Doing great things but not a cure. I have reached the one year benchmark in the PPMS trial. I am stronger and my progression has slowed.

I feel that this drug is setting the clock back for me in my disease process.
Not a cure but most definitely a great thing!
Primary Progressive, Onset 10 years ago at age 42, diagnosis 6 years ago, Vit D, Chinese Herbs, Exercise, yoga. So far tried antibiotics, fumaric acid and 4AP. Currently participant in the FTY720/PPMS Trial.<br />
User avatar
Smilingface
Family Elder
 
Posts: 113
Joined: Thu Apr 05, 2007 3:00 pm
Location: North Carolina

PPMS Gilenya

Postby bill3901 » Tue Jun 07, 2011 10:46 am

I just started the process of this drug. I remain optimistic, but I'm not sure anything would help at this point.
I would love to hear from someone with PPMS who is on this drug. Did it help?

I was holding a lot if hope for Ampyra and that was a bust.

Im 41 and have been diagnosed since 1997.

Thanks
User avatar
bill3901
Newbie
 
Posts: 2
Joined: Mon Jun 06, 2011 3:00 pm

Re: Humble reminder

Postby CureOrBust » Tue Jun 21, 2011 4:33 am

lmacalus wrote:... put me back on a pulse steroid for a couple of days.
Are there any specific restrictions with this and steroids? They are from my understanding both immune system suppressants.
User avatar
CureOrBust
Family Elder
 
Posts: 2914
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

just saw this one!

Postby lmacalus » Wed Jun 29, 2011 9:25 am

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 they do it via different mechnasims. G redistributes the lymphocyes in the body while steroids will supress the overall system.
I am stating month in two days so in the past nearly 8 months I've needed that 1 dose & that is it... WOW!!!!
User avatar
lmacalus
Family Member
 
Posts: 65
Joined: Sun Apr 05, 2009 3:00 pm

Quick Update - In month 6 now!

Postby lmacalus » Wed Jun 29, 2011 9:33 am

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 month and have not been sacked out afterwards (only adverse effect has been to my wallet!)

Libido still a bit sluggish but vision remains spot-on.

Most importantly, since the one hiccup a few months back I have been A-OK. Usually I have a flare/excerbation sometime in/around June - but this June is passing without incident. :D

MRI at the end of the month!!!! Will update then - sooner if something else comes up.
Blessing for all,
Laura
User avatar
lmacalus
Family Member
 
Posts: 65
Joined: Sun Apr 05, 2009 3:00 pm

Postby Algis » Wed Jun 29, 2011 10:32 pm

Thank you Laura; best to you :)
User avatar
Algis
Family Elder
 
Posts: 783
Joined: Sat Nov 21, 2009 4:00 pm
Location: XinDian, Taiwan

So a hot shower is one thing...

Postby lmacalus » Wed Jul 06, 2011 5:46 pm

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

Postby LR1234 » Thu Jul 07, 2011 1:28 am

:( sorry to hear that Laura. I don't seem to suffer from heat intolerance but I have heard it can be very disabling. I hope they work out whats causing it soon x
LR1234
Family Elder
 
Posts: 1503
Joined: Wed Feb 11, 2009 4:00 pm
Location: California

Heat tolerance increased but not fully eliminated.

Postby lmacalus » Sat Jul 09, 2011 7:34 am

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 resolved, flexability has returned. In month 5 now & still really thrilled with my results - still only 2 grams of solumedrol since starting G vs the minimal 14 I would have had over the same time period without G Blessings to all & stay cool!
User avatar
lmacalus
Family Member
 
Posts: 65
Joined: Sun Apr 05, 2009 3:00 pm

Postby lmacalus » Sun Jul 24, 2011 5:57 pm

check-ou the 6-mo MRI results - posted under separate subject: 6-month...
Blessings,
Laura
User avatar
lmacalus
Family Member
 
Posts: 65
Joined: Sun Apr 05, 2009 3:00 pm

Re: Humble reminder

Postby RedPepper » Mon Aug 01, 2011 12:13 am

CureOrBust wrote:
lmacalus wrote:... put me back on a pulse steroid for a couple of days.
Are there any specific restrictions with this and steroids? They are from my understanding both immune system suppressants.



Please confirm this information for yourself:
I think there was a fatality by Herpes infection when a person taking the high dose in an earlier trial (1.25mg) was treated with steroids too.
User avatar
RedPepper
Getting to Know You...
 
Posts: 19
Joined: Thu Jan 07, 2010 4:00 pm
Location: Ireland


Return to Gilenya

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service