Reply
 
Thread Tools Display Modes
Old 06-04-2010, 07:43 PM #1
ewizabeth's Avatar
ewizabeth ewizabeth is offline
Elder
 
Join Date: Sep 2006
Location: northern Illinois
Posts: 5,258
15 yr Member
ewizabeth ewizabeth is offline
Elder
ewizabeth's Avatar
 
Join Date: Sep 2006
Location: northern Illinois
Posts: 5,258
15 yr Member
Default

That doesn't explain the research results of, for instance, Copaxone. I haven't had any relapses or new symptoms while on it either. Before I started the DMDs it was new icky stuff happening all the time and it got even better with Copaxone.
__________________
Wiz

Turn Left at the next election.
.


RRMS DX 01/28/03 Started Copaxone again on 12/09/09
ewizabeth is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Jules A (06-09-2010), SallyC (06-05-2010), shayna (06-09-2010)
Old 06-04-2010, 08:43 PM #2
daisy.girl daisy.girl is offline
Member
 
Join Date: Feb 2010
Posts: 258
15 yr Member
daisy.girl daisy.girl is offline
Member
 
Join Date: Feb 2010
Posts: 258
15 yr Member
Default

when researching DMD a few months back...I came across this on the official copaxone website;

"Copaxone does NOT have an indication for reducing the progression of disability"
http://www.copaxone.com/NewlyDiagnosed/pivotTrial.aspx
scroll to the very bottom of the page.

this is one of the reasons I decided against DMD.....and just went with LDN.
daisy.girl is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
agate (06-05-2010), Dejibo (06-05-2010), Lady (06-04-2010), SallyC (06-05-2010), shayna (06-09-2010)
Old 06-04-2010, 09:28 PM #3
SallyC's Avatar
SallyC SallyC is offline
In Remembrance
 
Join Date: Sep 2006
Location: SW Ohio
Posts: 17,844
15 yr Member
SallyC SallyC is offline
In Remembrance
SallyC's Avatar
 
Join Date: Sep 2006
Location: SW Ohio
Posts: 17,844
15 yr Member
Default

Quote:
Originally Posted by ewizabeth View Post
That doesn't explain the research results of, for instance, Copaxone. I haven't had any relapses or new symptoms while on it either. Before I started the DMDs it was new icky stuff happening all the time and it got even better with Copaxone.
Maybe Copaxone is a mystery, like LDN. I'm not going to quit LDN, because some Docs scoff at it. I wouldn't quit C either, if I were you.
__________________
~Love, Sally
.





"The best way out is always through". Robert Frost



~If The World Didn't Suck, We Would All Fall Off~
SallyC is offline   Reply With QuoteReply With Quote
Old 06-04-2010, 10:11 PM #4
ewizabeth's Avatar
ewizabeth ewizabeth is offline
Elder
 
Join Date: Sep 2006
Location: northern Illinois
Posts: 5,258
15 yr Member
ewizabeth ewizabeth is offline
Elder
ewizabeth's Avatar
 
Join Date: Sep 2006
Location: northern Illinois
Posts: 5,258
15 yr Member
Default

It could also have something to do with the things going on in Europe with their sinking economy. They're in a crisis situation and they are very likely looking for any reason to not supply expensive medicines such as those for MS. If you read the article and look for the key terms you might see what I mean.

There will always be reasons to avoid the DMDs for those who wish to take that route. I choose to use the medicines that have been trialed and shown to have beneficial effects for MS. My MS neuro has been studying this for over three decades and he works for a clinic that takes a majority of medicaid patients so he isn't getting rich off of this, but he's involved in research trials for MS and, (mayo trained) and I believe what he says. There are people who fly across the country to see him.

I'm sticking with Copaxone after many years of my own research but I admit I could not afford it without insurance.
__________________
Wiz

Turn Left at the next election.
.


RRMS DX 01/28/03 Started Copaxone again on 12/09/09
ewizabeth is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Debbie D (06-05-2010), Jules A (06-08-2010), SallyC (06-05-2010), shayna (06-09-2010)
Old 06-05-2010, 05:04 AM #5
Blessings2You's Avatar
Blessings2You Blessings2You is offline
Elder
 
Join Date: Jan 2008
Location: Vermont
Posts: 6,726
15 yr Member
Blessings2You Blessings2You is offline
Elder
Blessings2You's Avatar
 
Join Date: Jan 2008
Location: Vermont
Posts: 6,726
15 yr Member
Default

This will be interesting to follow--not only this thread, but the reaction (assuming there will be one) of the medical community, specifically neurology.
__________________
*
*
*

**My flesh and my heart may fail, but God is the strength of my heart and my portion forever. (Psalm 73:26)
Blessings2You is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
SallyC (06-05-2010), shayna (06-09-2010)
Old 06-05-2010, 06:46 AM #6
volada's Avatar
volada volada is offline
Junior Member
 
Join Date: Feb 2008
Location: Maryland
Posts: 61
15 yr Member
volada volada is offline
Junior Member
volada's Avatar
 
Join Date: Feb 2008
Location: Maryland
Posts: 61
15 yr Member
Default i would have to read the studies to fully form an opinion

when i was first diagnosed in feb 08 i did tons of research and panicked over which med, when/whether to use a med and how would my disease progress over the next 40 years....i went w/dmd's based on research then that showed a difference (for some) who started on them as soon as possible after diagnosis
then had to focus on daughter's kindergarten activities, work and just living...now not worrying about the research...skipped a year of mri's and recent mri showed diminished lesion--after 2 years of betaS...however...also possibly some new little lesions...ms seems to be a random thing for many as is the progression, reaction to dmd's (or not).

my neuro was pretty honest...no guarantees-w/dmd's--they might not do anything at all. but, i will email the article to him to get his take...
__________________
1st symptoms--01-27-08 (blurred vision)
dx 02-12-08
confirmed with neurologist 02-15-08 spinal tap 03.03.08
started avonex 03-14-08
july 2011-ish....lesions on the spine (at least two!)
.

started rebif 12-01-11

You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror. I can take the next thing that comes along.' You must do the thing you think you cannot do. Eleanor Roosevelt
volada is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
SallyC (06-05-2010), shayna (06-09-2010)
Old 06-05-2010, 06:54 AM #7
Dejibo's Avatar
Dejibo Dejibo is offline
Elder
 
Join Date: Jan 2008
Location: New Hampshire
Posts: 7,332
15 yr Member
Dejibo Dejibo is offline
Elder
Dejibo's Avatar
 
Join Date: Jan 2008
Location: New Hampshire
Posts: 7,332
15 yr Member
Default

I am so tired of this!

#1 I feel AWFUL when I take Copaxone. I keep hearing how my sx are NOT listed, and how many patients do well on this drug, and how I should hang in there, and take a pill to counter act the feelings, and then I am medicated,and dont feel well. ALL of the MDs keep telling me how important it is that I stay on the meds.

#2 When I stop the meds, my brain comes back. I can think again! I have energy! I have creativity. I have stability emotionally, and I am able to interact with folks again.

What does that say? it says that C is the CAUSE of my sx, and stopping it cures it!

I have agreed to a 3 month trial again of C, and this time, I am doing quadruple research on this med, and I have made the statement loud and clear that if I land back in the sit on the couch and watch my life go on without me crowd, I am laying down the needles. I didnt survive stage 4 breast cancer to live my life stuck on the couch! or so exhausted, from lack of sleep I cant function. I want my life back!

Thank you so much for sharing your info. I have found the DMDs to be worse than the ding dang disease!
__________________
RRMS 3/26/07
.

Betaseron 5/18/07
.

Elevated LFTs Beta DC 7/07
Copaxone 8/7/07
.



.
Dejibo is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
agate (06-06-2010), barb02 (06-05-2010), Debbie D (06-05-2010), ewizabeth (06-05-2010), gonnamakeit (06-05-2010), Lady (06-06-2010), SallyC (06-05-2010), shayna (06-09-2010)
Old 06-05-2010, 08:07 AM #8
Debbie D's Avatar
Debbie D Debbie D is offline
Elder
 
Join Date: Jan 2008
Location: Naperville IL
Posts: 5,169
15 yr Member
Debbie D Debbie D is offline
Elder
Debbie D's Avatar
 
Join Date: Jan 2008
Location: Naperville IL
Posts: 5,169
15 yr Member
Default

I see the same neuro as Wiz...at a recent lecture, he discussed the theory out there that the immune system might not in fact be attacking the myelin...that the immune cells go in after whatever causes the damage to clean it up.
He still thinks we'll figure out what actually causes the disease, and has hopes that a cure will be found in our lifetime.

This is an interesting thread...I look forward to more posts as I ruminate on this...
__________________
Instant Karma's gonna get you-gonna knock you right in the head...John Lennon
Debbie D is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
barb02 (06-05-2010), SallyC (06-05-2010)
Old 06-05-2010, 09:36 AM #9
SandyC's Avatar
SandyC SandyC is offline
Wise Elder
 
Join Date: Jan 2008
Location: Somewhere over the rainbow
Posts: 9,227
15 yr Member
SandyC SandyC is offline
Wise Elder
SandyC's Avatar
 
Join Date: Jan 2008
Location: Somewhere over the rainbow
Posts: 9,227
15 yr Member
Default

Jim couldn't take A, B or C but B made a comeback two years ago. Is it working? Who the heck knows, but he feels good and has no lesions.
__________________
. . A woman is like a tea bag. You never know how strong she is until she's in hot water. Eleanor Roosevelt
SandyC is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Debbie D (06-05-2010), ewizabeth (06-05-2010), SallyC (06-05-2010)
Old 06-05-2010, 09:39 AM #10
ewizabeth's Avatar
ewizabeth ewizabeth is offline
Elder
 
Join Date: Sep 2006
Location: northern Illinois
Posts: 5,258
15 yr Member
ewizabeth ewizabeth is offline
Elder
ewizabeth's Avatar
 
Join Date: Sep 2006
Location: northern Illinois
Posts: 5,258
15 yr Member
Default

I should add that the DMD's cause symptoms for all of us, and they seem to have an opposite effect for some of us. Rebif was horrible for me. It stopped the MS symptoms but made my life he|| in worse ways. Copaxone happens to work for me (knock on wood) and I'm fortunate for that (even though I always have itchy bumps.)

But we need to look at the underlying reasons for that article since it's closely related to their universal healthcare and the economy in that country.
__________________
Wiz

Turn Left at the next election.
.


RRMS DX 01/28/03 Started Copaxone again on 12/09/09
ewizabeth is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
agate (06-06-2010), barb02 (06-05-2010), Debbie D (06-05-2010), Dejibo (06-06-2010), SallyC (06-05-2010), SandyC (06-05-2010)
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
To work or not to work? Mr Bump Traumatic Brain Injury and Post Concussion Syndrome 23 01-10-2010 10:43 AM
Switching DMDs FinLady Multiple Sclerosis 6 04-04-2009 11:54 AM
Wonder if this will work... #162 Abbie Survivors of Suicide 31 01-04-2009 06:15 PM
Work, inability to work "productively" and disability... snoodles Multiple Sclerosis 9 03-17-2008 12:09 AM
Are We Happy With Our MS DMDs SallyC Multiple Sclerosis 44 05-27-2007 08:49 PM


All times are GMT -5. The time now is 06:38 AM.


Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.