Looking for LDN users experiences
 

I know there are a couple (or more) of you taking LDN Low Dose Naltrexone. And I'm looking for a new med to try and slow down the MadnesS.

What doses are you taking? How long have you been on it? Side effects? Pros and Cons? Do you think it helps you? Any and all information is most welcome.

:hug:

LDN 2+ years, but listed as probable MS. No severe attacks since, no side effects, but if I stop, the fatigue gets worse, along with every thing else. Where is Cheri?
Pat

4.5 mgs

Hi Beth..:) On LDN 5 yrs in Apr.. No MS Progression since starting. More strength, better balance and NO MS fatigue. I am SPMS.

I started on 3mg and upped it to 4.5mg and have been on that for the last 3+ yrs. I had no adverse side effects, although some ppl complained of insomnia, for the first two weeks, and leg stiffness....(I had a little of that but it went away).

The 2 top reasons I still use it: No Progression and I just plain feel better!!

Sally bumped up a prior thread for you, so I won't the details of my prior posting:

http://neurotalk.psychcentral.com/thread37626.html

I started at 3.0mg in May/05, but I think most people are starting on 1.5mg now. I did have some initial side-effects at that dosage, but nothing that was too disruptive:

- flushing/hot feeling for two days
- didn't need hardly any sleep the first few days, but didn't feel worse for wear because of that :confused:
- nausea for about a week, till I figured out I needed to follow the recommendation to down a glass of water right after taking it :rolleyes:
- I think a slight headache

Considering how terribly sensitive I am to drugs, I thought I got off pretty easy. :)

The good I experienced very quickly from LDN was AMAZING though:

- claw hand (five yrs) disappeared
- spasticity pain GONE
- bladder/bowel control
- fatigue improved (but even much better after getting off A/D's)
- dropped A/D's :D
- stopped relapsing (had been relapsing every 3 months prior to LDN) NOTE: I have been relapsing again this last (stressful) year, but not nearly as severe as prior to LDN
- EDSS reduced by one point in 9 months, and I have remained stable in disease progression (by that measure)

Some improvements were very subtle and over a longer period of time too. I have witnessed people go off LDN, thinking it wasn't helping, then watched their attitude (and progression) go straight out the window. Unfortunately though, if people don't see the symptom improvements some of us get (only 2/3 realize this benefit), sometimes they don't think it is working for them. I'm not so sure I agree . . .

Personally, I know that LDN helps me because it only stays in our system for about 18 - 24 hrs. If I go off for one day, I start to slide right away . . .

You may need to go up and down slightly (especially when the cold weather/spasticity hits), so I guess I am fortunate that I use the liquid version. However, I would recommend you get the drug from Skip's (1.5 mg capsules) because he is the most experience with compounding. You'd probably want to start at 1.5mg too, as most people do now.

Cherie

the pd forum has a thread going about ldn too.

Thanks Cherie
I love the completeness of your replies. I share many of the same symptoms as you and then some. I only have 3 brain leisons, since I was dx and the rest are in my spine.

I can't seem to get any relief as most of my stuff is sensory. Like it's okay that there are no meds to help. :mad:

I've read you previous posting also. But I do have a couple more questions. Cost? Is it expensive, covered by insurance? And the Skip's you refered to, is that a pharmacy?

Thanks for all your words of wisdom. Your posts are so informative and well spoken, always.

:hug:

Mine is covered by insurance (in Canada), but it wasn't without justification. They didn't have a code for LDN :rolleyes:, so my doc had to complete a form supporting the necessity for the rx, and they put it in a generic coding. I pay for it up-front (unlike most meds which are on their computer system) and then remit the expense.

It is anywhere from $15 - $30 a month . . . cheap as borscht, even if you have to pay for it out of pocket.

"Skip's" is Skip's Pharmacy in Florida. He can mail it to you, and if your insurance covers it, I believe he will accept that form of payment.

I'm glad you understood my posting. When I proofed I saw some room for confusion, but my hands are too numb to bother trying to fix it (conserving energy for various posts ;)). :D

Cherie

I just want to say for some the results are instant. I woke up the first morning and was cleaning windows at 5:30 am!
Pat

I had a few good perks right away , too. The first day, I could stand right up without holding on and my balance was much better. Before LDN, I couldn't close my eyes without falling over....after LDN, I could, without losing my balance.:)

I was already SPMS, so it didn't go back and wipe out the permanent nerve damage, already done, but I think, it sure did keep me from getting worse.

Like Martha would say.."It's A Good Thing" :D

Worth a try for anyone IMHO!!:hug:

Miracle for me, too. I have been on about a year with no side effects. I, also felt results immediatly. Started at 1.5 and now I take 3, nuero says that is high enough but I wouldn't mind trying more. I have more energy and less pain, what a relief it has been. My ins doesn't cover it but it is very inexpensive. I can get 5 months worth at a time from Skips so that saves on postage.

ive only been on it for a month or so but the first day after taking it the cold numb feeling in my feet was gone! if for that alone the LDN would be a bargan at twice the price

I just started taking 1.5 mg LDN this past week. Lucky for me, Skip's is fifteen minutes from my house. I was shocked at the price - $9.95 - what a deal! I am so encouraged by everyone's testimonials. I am thinking positive!

You're all making me jealous!!!


I tried to get the PA at my doctor's office to write me a Rx yesterday. She wouldnt do it...said she didnt want to step on my neuro's toes. (step on them! geeze, someone give me some LDN!!!)

I'm asking my neuro again when I see him later this month. If he thinks it's a placebo, then what would the harm be in writing me a Rx??

Im here and on LDn I post in the sticky thread above this thread on top

Pals would you like to take some LDn at my house ....hmmmmmmmm lol

it is unique, it took a couple days then I waited one or two more before I said something, there was a noticeable diff for me

step on those toes! stomp stomp stomp, then maybe he can feel something like neuropothy in his feet too.
im not sure where you're at but there is an LDN advocate who keeps a list of DRs willing to rx LDN. plus theres a list of DRs who will do a phone consultation and write you a script, and then fax it to reputable pharmacist like skips. people kept pointing out to me that LDN is an off lable script, its not FDA indicated for MS. guess what.... niether in the neurontin, or the immuran. and now they're both hugely popular drugs for MS