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-   -   Anyone on LDN (https://www.neurotalk.org/multiple-sclerosis/213850-ldn.html)

poochie 12-22-2014 10:35 AM

Anyone on LDN
 
I have been on LDN for about 15 years, have not had an attack since starting it, also no lesions for the past 10 years. I hate taking meds, I want to get off it, has anyone stop taking LDN and can you tell a difference.

CarolM 12-22-2014 11:38 AM

I've been taking LDN for six or seven years. Haven't had an attack or progression since starting it, but then I only had two attacks six years apart before starting LDN. It helped a lot with heat intolerance and my energy level picked up. I haven't seen a neuro in 8 years so no MRI's since then.

I also hate taking meds but am afraid to stop LDN. A few times, when life got busy, I fell asleep before taking it and/or just plain forgot; some symptoms started creeping in. I've never had the hug except during an attack but on those occasions that I miss taking it a lot of the time, for a few weeks or a month, I've gotten tightening around my rib cage and an increase in the tingling in my feet. Once I get back on track, that goes away.

So, it's a small pill, doesn't cost much, no side effects....I keep taking it.

C

SallyC 12-22-2014 08:42 PM

Check out the LDN sticky at the top!!

I loves me LDN.

Quit at your own risk...:D

MSbelle 12-28-2014 10:31 AM

I've been on LDN since the beginning of October. I've had at least one relapse since, and I'm doing worse than ever right now. I'm also on Betaseron but have only been for a month. I haven't really been on anything long enough to help you with your decision! I will stay on LDN with hopes that it might help me, but so far it seems like nothing more than a placebo unfortunately. I hope it's doing some good.

SallyC 12-28-2014 11:21 AM

Quote:

Originally Posted by MSbelle (Post 1114920)
I've been on LDN since the beginning of October. I've had at least one relapse since, and I'm doing worse than ever right now. I'm also on Betaseron but have only been for a month. I haven't really been on anything long enough to help you with your decision! I will stay on LDN with hopes that it might help me, but so far it seems like nothing more than a placebo unfortunately. I hope it's doing some good.

I've heard than LDN and any interferon does not always work well together.
Copaxone is said to work better as it uses a different method of attack.:D

MSbelle 12-28-2014 01:19 PM

Really? My neuro knows I'm taking LDN and rx'd Beta anyway. I'll have to do some research on that.

caroline2 05-24-2015 11:29 PM

I attempted to get my sister to check out LDN, but she didn't. She was too involved with all the drugs her NY specialists were giving her to "slow down" the progression....the drugs have not slowed down, I'd say advanced.

Now a friend here that I told about LDN has been taking it for 4 yrs or so and she is doing good with it.

MSbelle 05-25-2015 12:51 PM

If it ain't broke, don't fix it!! How I wish LDN could control my relapses. I was on 4.5 mg from October 2014 to beginning of this May, and in that time had the worst relapses ever. I just had Lemtrada and had a great improvement from the steroids infused prior to it, and I have stopped LDN. For me, it did nothing.

SallyC 05-25-2015 01:40 PM

You should have given it longer..:)

Quote:

Originally Posted by MSbelle (Post 1144280)
If it ain't broke, don't fix it!! How I wish LDN could control my relapses. I was on 4.5 mg from October 2014 to beginning of this May, and in that time had the worst relapses ever. I just had Lemtrada and had a great improvement from the steroids infused prior to it, and I have stopped LDN. For me, it did nothing.


MSbelle 05-25-2015 03:42 PM

Quote:

Originally Posted by SallyC (Post 1144293)
You should have given it longer..:)

After just spending $35,000 for Lemtrada, cuts need to be made. LDN is expensive and I truly don't believe it had any effect for me.


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