Reply
 
Thread Tools Display Modes
Old 03-20-2010, 06:18 AM #1
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 LDN overview?

I found the LDN "forum", with fourteen gabillion replies...is there someplace I can find out general information, or can one or more of you who takes it give me kind of an encapsulated version?

I want to have some information of my own before I go see my neuro, and I've heard that LDN is something doctors don't always prescribe...why?

I stopped taking Copaxone a couple of weeks ago because of side effects (long story) which went away...so I think I'm going to have to make some decisions.

LDN downside? Side effects?
__________________
*
*
*

**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:
Lady (03-21-2010)
Old 03-20-2010, 11:07 AM #2
Kitty's Avatar
Kitty Kitty is offline
Wisest Elder Ever
 
Join Date: Jan 2008
Location: Deep South
Posts: 21,576
15 yr Member
Kitty Kitty is offline
Wisest Elder Ever
Kitty's Avatar
 
Join Date: Jan 2008
Location: Deep South
Posts: 21,576
15 yr Member
Default

Here is a good website for LDN : www.lowdosenaltrexone.org.

I love it. I've been on it now for a little over 2 years and I'm very pleased with it.

I still have sx sometimes......and I've had a flare or two.....but I recover from them very quickly and without the need for IVSM or other steroids. To me, that is huge. Steroids weakens our bones so badly. And with us prone to falling that can have devastating outcomes.

The only side effect I experienced with LDN was when I attempted to increase my dosage from 3.0 mg to 4.5 mg. I got spasticity in my legs that kept me awake at night. I went back down to 3.0 and waited a month or two before trying the higher dosage again. It took a few attempts but now I'm on the optimal dosage of 4.5 mg.

Vivid dreams are another common side effect from LDN. Not bad dreams....just colorful and very lifelike. They're very entertaining!

I am so glad I tried LDN. It's very inexpensive (3 month supply for about $50....works out to be about $16 a month).

I feel like I'm doing something positive and proactive in dealing with my MS.
__________________
These forums are for mutual support and information sharing only. The forums are 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.
Kitty is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Blessings2You (03-20-2010), Lady (03-21-2010), SallyC (03-20-2010)
Old 03-20-2010, 12:42 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 Kitty View Post
Here is a good website for LDN : www.lowdosenaltrexone.org.

I love it. I've been on it now for a little over 2 years and I'm very pleased with it.

I still have sx sometimes......and I've had a flare or two.....but I recover from them very quickly and without the need for IVSM or other steroids. To me, that is huge. Steroids weakens our bones so badly. And with us prone to falling that can have devastating outcomes.

The only side effect I experienced with LDN was when I attempted to increase my dosage from 3.0 mg to 4.5 mg. I got spasticity in my legs that kept me awake at night. I went back down to 3.0 and waited a month or two before trying the higher dosage again. It took a few attempts but now I'm on the optimal dosage of 4.5 mg.

Vivid dreams are another common side effect from LDN. Not bad dreams....just colorful and very lifelike. They're very entertaining!

I am so glad I tried LDN. It's very inexpensive (3 month supply for about $50....works out to be about $16 a month).

I feel like I'm doing something positive and proactive in dealing with my MS.
Ditto!!!!! Except I've been on it for 7 yrs, this April.
__________________
~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
"Thanks for this!" says:
Blessings2You (03-20-2010), Kitty (03-20-2010), Lady (03-21-2010)
Old 03-20-2010, 01:12 PM #4
Twinkletoes's Avatar
Twinkletoes Twinkletoes is offline
Grand Magnate
 
Join Date: Jan 2008
Location: Beautiful central Utah
Posts: 4,611
15 yr Member
Twinkletoes Twinkletoes is offline
Grand Magnate
Twinkletoes's Avatar
 
Join Date: Jan 2008
Location: Beautiful central Utah
Posts: 4,611
15 yr Member
Default

Hi Blessings!

I've been taking LDN for 20 months now. It was about a month before I could take 4.5 mg. dose.

I was able to convince my GP to Rx it after he read the info I took with me. I printed it straight from the website Kitty mentioned, and highlighted a few key phrases.

He basically shrugged and said, "Its worth a try."

I'll be interested to know what you decide. Good luck!
__________________
Rochelle
.



.


I've lost my mind ... and I don't miss it!


LIFE HAS NO REMOTE -- GET UP AND CHANGE IT YOURSELF!
Twinkletoes is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Blessings2You (03-20-2010), Lady (03-21-2010)
Old 03-20-2010, 01:19 PM #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

Two things come to me: Do neuros hesitate to prescribe? Is it usually through your PCP?

And...the spasticity concerns me. I take quinine (I know, I know) for the muscle spasms I was having. Don't want to go through THAT again!
__________________
*
*
*

**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
Old 03-20-2010, 02:01 PM #6
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

Yes and No...Some Neuros do not go outside the ABCR box. Most PCPs will prescribe it, if the are aware of it.

The spasticity is a part of MS and it comes and goes, with or without LDN. Since LDN causes our endorphines to increase, you may get an up feeling and your legs may feel stiff and you may be unable to sleep.. If it doesn't go away in a couple days, then reduce your LDN untill you are comfy (usually 3mg/ 2mg) and stay there for a few months, before trying to increase it again.
__________________
~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 03-20-2010, 11:07 AM #7
poochie poochie is offline
Member
 
Join Date: Jan 2009
Posts: 129
15 yr Member
poochie poochie is offline
Member
 
Join Date: Jan 2009
Posts: 129
15 yr Member
Default

I've been on LDN for about 5 years, 3 mg. It has helped me, I don't have attacks anymore, it does not keep it from progressing, but it has slowed it down for me. Tell your doc you have nothing to loose, the dose is so small, there is no side effects and you might as well try it. I took avonex for a while, the side effects were so bad for me I stopped it, and started having attack after attack, then went on LDN and they stopped, it will take a while for it to work for you, it isn't for everyone, I have a friend that has PPMS and it didn't help her. You just have to try it. Everyone to their own. Good luck, let us know.
poochie is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Blessings2You (03-20-2010), Kitty (03-20-2010), Lady (03-21-2010), SallyC (03-20-2010)
Reply

Thread Tools
Display Modes

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
Systemic Enzyme Support - An Overview Mslday Reflex Sympathetic Dystrophy (RSD and CRPS) 4 02-13-2009 05:23 PM
interesting overview on TS Chemar Tourette Syndrome 1 08-07-2007 04:56 PM
Overview of the Migration Process buckwheat Reflex Sympathetic Dystrophy (RSD and CRPS) 1 05-25-2007 09:51 PM


All times are GMT -5. The time now is 01:58 PM.


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.