Has anyone used LDN?

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sral

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Learn about ALS
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Hi,

I was just wondering if anyone has used LDN and what their experience has been?

thanks.
 
Ldn ?

Hi SRAL,

Just wondering what LDN is. Is it a drug or supplement ?
 
Hi,

LDN is a drug. It actually means low dose naltrexone. I've done some research on it and it seems that some PLSers have had success with it, i.e. been able to feel stronger and improve some symptoms.

Hope this helps explain it.
 
LDN has to be Scripted and made at a special Pharmacy. There again if your Doctor doesnt want or think it will help ,he or she gets to play God again . Geo
 
You are absolutely right Geo!

All my mom's neuros have refused to prescribe it but we have a family friend who is a GP and will prescribe it.

Have you Geo heard anything positive or negative about this?
 
hi sral.
i do know a while back on another pls forum there was a discussion about this,some had tried it.
i will see if i can find any info in the back dated posts there.
may take a few days though as it may take time;-):)
 
Olly,
We can always count on you for your fine research skills. So many plser's talk about it.
 
sral

as promised i found the info on ldn,despite having over 6,ooo messages to go through i found the posts fairly quickly.
these posts are from early last year.
hope they help:)

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The below site is very informative. I printed the site off and carried a
copy of it to my neurologist at the MDA and she did not hesitate in writing
the script for me.

True, the medication is used for addicts in high doses. True, the
medication is a compound and has to be made.
--------------------------------------------------------------------------------------------------------------
Most insurance companies refuse to cover the medication for its intended use
on addicts. However, the medication through Skip's is inexpensive, $65.00
for a 90 day supply delivered.

Every individual reacts differently to all medications, i.e., Baclofen can
be tolerated by some and others cannot take it and the same goes for LDN. I
feel LDN has done me a lot of good. My skin color is normal, my hair has
grown back and I need a hair cut every time I turn around. My skin under
the figure nails is pink vs. gray and they grow fast. I also feel it has
reduced my urgency of needing to go to the bathroom
Some people saying it has not done them any good and I feel a larger number
of people have had positive results from it. A small dose (4.5mg/day) is
not harmful to anyone and if you do not see any changes from it, don't take
it. We all seek some relief, may it be with herbs, vitamins, or medication.
Whatever you think works and you don't know unless you try.

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it's low dose naltraxone. it's a controversial drug. it was originally
created to help with
opiate addicts (at 50mg doses). many people with autoimmune and
neurological
disorders are convinced it helps them - some stating it stops the
progression of their
disease and others stating it relieves their symptoms. there is a lot of
info re: LDN on the
internet. the drug has to be compounded (so there are only specific
pharmacies that can
make it). i have done a lot of looking into LDN but have been unable to
find a neurologist
or doctor who believes it works, so i have been unable to obtain a
prescription. there are
just as many people saying they tried it and it did nothing as there are
saying they are on
it and it is a wonder drug.

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I started back with LDN last night. Now that I have been off of it for about 10 to 12 days I was wondering what would happen when I started back at 45 mg and I'm happy to report that everything seems normal---well, you know--and I never got up once for the pee pot last night. That would make it hard to argue that there is or isn't urgency benefit. I know it helps me. I can't speak for the world but I can tell you I won't be giving it up without a fight.
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I was becoming seriously irritated
by the heavy handed promotion of LDN as a therapy for PLS. I suspect up
to 10% of the postings relate to LDN (maybe the group needs
renaming?) . There is NO evidence that it works for PLS (or indeed
anything apart from Crohn's disease).

The number of guillable people on this site who are jumping through
hoops to get their neuros to prescribe LDN beggars belief. I think the
moderators should
have locked this topic down years ago, until such
time that evidence of efficacy for MNDs is demonstrated. I am
disheartened that no-on has found the courage to get any real critical
discussion going.
----------------------------------------------------------------------------------------------
You need not stay away from PLS-Friends unless you choose to do so.
FYI, a separate Support List has been set up for LDN for PLS-HSPers.
Everyone makes their own decision on what they would like to try to
help their disorder.

Linda Gentner
VP - SPF
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I, too, find the constant one-sided view of LDN annoying. If LDN stopped MND I believe
there would be more medical proof and support. Do I believe it helps some people
manage their symptoms? Yes. But so do lots of other things.

I did a lot of research on LDN when I first got sick (misdiagnosed with MS). I asked my
neurologists about it and one of them flat out said it doesn't work and due to its instability
he would not prescribe it. I have not been able to find enough compelling evidence from
those who are taking LDN to believe it will help me. I've had 4 neurologists and will be
heading to a 5th soon as my local neuro is leaving patient care - and while I do believe I
have to advocate for myself and believe I am the best expert on what is happening to my
body - I do believe in finding doctors you can trust - and the doctor who told me LDN
doesn't work - I trust him and I believe him.
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Naltrexone is an approved drug for the treatment of addiction to
alcohol and other drugs. There has been some valid research using
low doses of the drug for Crohn's disease (a chronic inflammatory
disease of the digestive or gastrointestinal tract). However, there
have been no studies to determine what, if any, low doses of
Naltrexone (hereafter written as LDN) benefits or slow the
progression of PLS. There is no empirical (capable of being verified
or disproved by observation or experiment) evidence that LDN
provides any benefit to the reduction of progression of PLS. There
is LOTS of anecdotical evidence. All positive comments about LDN are
anecdotal. There is no proof, the statements cannot be proven
through observation or experimentation. Seems fairly simple. But,
ad advocate reports success, sometimes with the notation that it
might take 6 months to be able to determine a difference

How would
one determine a difference? Get up one morning and say, "shoot, I
feel better than I did on this day 6 months ago". OK, prove it.

Gene has linked LDN with Rilutek. Well, Rilutek is also a legal
drug. And like LDN, there has been no imperical evidence that it
provides any benefit to people with PLS. The clinical tests were
done in both the US and France (actually two full clinical studies
because the data provided by the tests in Fance (where the drug was
developed) did not match the evidence with tests in the US. After
the second round of tests, the drug was approved by the FDA for use
with people with ALS. The benefit that Rilutek demonstrated in those
tests was relative short period of time between the time a person
with ALS would normally require a ventilator after taking Rilutek and
a person with ALS that had not taken the drug. That amount of time
equalled approximately 3 months.
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No doubt it will count for nothing to you, but for anyone who’d like
them I have saved dozens of posts from the LDN forum from people with a
wide range of conditions who LDN is helping greatly eg. the elderly
woman who was diagnosed over 4 years ago with breast cancer. She had no
surgery or other treatment, only LDN and is now cancer free. I don’t
know that I’d be game to trust my life to LDN like that, but given her
age that was her choice. Or the MSer who posted the following recently
“I've been on 3mg LDN for over three years, I believe it has halted my
progression. I saw my Dr. yesterday and we are trying different doses
(that part paraphrased). Before starting LDN I couldn't walk at all, now
I can walk on parallel bars, I hope to find the right dose to where I'm
able to walk without assistance.” Many, many more – too many to be
dismissed as all loopy idiots.
This from an ALSer here posted on the Australian ALS/PLS forum recently
“I’ve just finished my third week on 4.5Mg Naltrexone and would just
like to thank all the group members who supplied me with information on
this amazing drug! Just three weeks ago I was beginning to become very
distressed as I was starting to wake up during the night with difficulty
breathing, that has now completely cleared up, as have my mucus and
excessive saliva problems! In addition I have re-gained some movement in
my thighs, lower back and right arm. Family and friends have remarked
that my face seems more animated and my voice a little stronger. “

Many of the people on the LDN forum who found LDN didn’t work for them
learned that can be an indicator of possible Lyme Disease (LD), had
themselves tested for it and lo and behold did have LD. With the
appropriate treatment they are now improving. I’m guessing that few of
the people who weren’t on the LDN forum and for whom it didn’t work knew
of that connection, so are needlessly deteriorating.
Last year on two different occasions I drove over and visited couples I
hadn’t seen since before or about the time I started LDN. One of those
people is very severely affected by ALS, so knows all about disability
and progression. Unprompted both couples commented that I was moving and
doing things BETTER than last time they had seen me over three years
earlier! That is not meant to happen with pls.
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here's Lyndal's description:
The LDN for PLS & HSP Group is for persons who have symptoms of upper
motor neuron diseases such as Primary Lateral Sclerosis (PLS) or
Hereditary Spastic Paraplegia (HSP), and who are taking low dose
naltrexone (LDN) or are considering taking LDN. This group also
accepts relatives and caregivers or anyone else interested in the
results of LDN on the progression of our diseases.

Therefore, I would really appreciate it if all of you who are taking
LDN would please join the group and then post an introduction with you
impressions of LDN to date. I would also very much appreciate those
of you who have tried LDN and stopped using it (for whatever reason)
to please join as well, as I will also need your story on why you
decided to quit. Together we will work in accessing the effectiveness
of LDN's ability to slow or stop the progression of our diseases.

Others interested in trying LDN or wanting to ask questions about LDN
are very welcome to join also. Answering those questions will
probably make up the majority of daily posts. However, it is my
intention and EXPECTATION that the LDN members should submit a
progress report AT LEAST once a year, preferably twice a year. That
along with your initial introduction should provide the basis of an
annual report which I can post on PLS-Friends & PLSers-NEWS so that
others can get an idea of how LDN is affecting our diseases, pro or
con.

thanks

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ok, alot of for and against..............there was a major heated discussion in between the posts.
there is more but too much to post at once,hopefully this will give you more of an idea about ldn.
theres also a couple of web sites included that maybe of intrest.
 
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Thanks Caroline.

I think given what I've read and heard, at the low doses for PLS, there are not many severe side effects. I know that this does not work for many and there is only a small % that it works for.

In my mom's case, where she has yet to plateau, it's probably not a bad idea to try it and see if she is one of the lucky few that it may work for. This said, I think we're a long way away from getting her on it. Her GP refused to prescribe yesterday and her neuros already said no. Now I need to turn to the family friend and this isn't always straight forward because my mom is not his patient and he does not practice as a general practitioner. He actually works with addicts.

Thanks everyone.
 
hi sral.
i dont know much about it but it does not appear to be any worse than lithium.
hopefully you will be able to get it,it can not hurt to try it .
its like with any other drug,it can work for some but not for others.
i wish you and your mum all the best with this and keep us updated:grin:
 
Hi Olly,

It's funny you mention it to be similar to lithium because my mom tried that for about 9 mths and it did not do much for her. In the first month she saw improvement but it did not last. However, getting off of lithium was difficult because she saw some worsening upon stopping but that went away.

Her neuros had refused to prescribe that too and now they are running a study on it. Her neuro is heading the study for the entire country and I can remember the day he refused and went as far as saying that he was against me trying to get it from another doctor.

Oh well, if you don't try you'll never know.
 
There is no mention of PLS or ALS that I could find on that site. Reputable sites have stated it does not work.
 
hi guys, I tried it for a while, a little help for the first month, than nothing.. I stopped. Like Olly said, some people rave about it.
 
Hello--this is the first time I ever heard of this medication. My Mom was diagnosed one month ago. The baclofen does not seem to help much. She is exhausted most of the time, and we are doing our best with PT, and keep her moving. She is just so tired. The accupunture seems to help her. Not sure if its psychological or not. What is this drug supposed to do? Has anyone had any side effects? Are the side effects reversible?

Thanks for all your encouragement and support. I am happy that I found this site. I read all about Geo and Joel. I wish you men the best, and hope today is a good day for you guys. I have told my Mom about everyone I read about here. Are there any support groups where you can meet other people in your area with the same problems? I think it would help my Mom alot. We live on Long Island, NY.

Happy Father's Day to all you Dads.
 
Hi drycolombo. If you go to www.alsa.org and the In Your Community section and put your postal code in it will give you support groups closest to you.

AL.
 
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