HealingWell
Search Close Search
☰

LDN working for anyone besides InSoFla ?

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/6/2015 11:52 PM (GMT 0)
Did anyone else manage to obtain and get relief using LDN ?
Posted 8/6/2015 11:59 PM (GMT 0)
Me.

I know there are LDN forums out there. Those sites are where you'll find the most success stories.
Posted 8/13/2015 6:45 PM (GMT 0)

aguywithuc said...
Did anyone else manage to obtain and get relief using LDN ?

Yes, it put me in remission for about a 1 year when I started taking it back in 2006. I've flared several times since. Nothing works forever with UC it seems.
Posted 8/13/2015 10:07 PM (GMT 0)
Didn't do anything for me
Posted 8/14/2015 1:25 AM (GMT 0)
It gave me relief during short stretches, but it really works so much better with some anti-inflammatory diet protocol. Also, 4.5 mg is way too high of a dose for many. My personal sweet spot was around 1.5 mg, though you'd have to experiment and find the dosage that works best for you. I would start out with 1 mg and increment by .5 mg each week.
Posted 8/14/2015 3:21 PM (GMT 0)
Some people aren't using any type of diet. It still works the same.


Yeah, I noticed that the dosage was too high too. 3 mg is the dose that works well for me.
Posted 8/14/2015 4:14 PM (GMT 0)
I have 3 more months of long commute and things are GOOD right now so I am sticking to Pseed-propynal-l-l-Carnitine, chia, MSM, low sulfasalazine, Reward plant protein. 5 Curcumin pills daily too.

However I would like to start lining this up in case I feel I need to pull the trigger, how do you get a script for it the last naturapath I saw here was a total fraud and ignored repeated verbal and written requests for LDN.

Post Edited (aguywithuc) : 8/14/2015 11:32:12 AM (GMT-6)

Posted 8/14/2015 4:46 PM (GMT 0)
It makes enough difference at 3mg to keep using it as an immune regulator but I take other herbs and supplements along with it. I doubt it's enough to stave off flares by itself.
Posted 8/14/2015 5:31 PM (GMT 0)
Guy, I lucked out with my family doctor. He's a pain management doctor, so he knew about LDN. I gave him a copy of the trial, then he agreed.

Perhaps do print out the copy of the trial (I think it's the one for Crohns). Shop around for another naturopath, especially one who is knowledgeable about it. I know some people buy it online. I haven't.


Kevin, I think it depends on the person. I know some find that they need 4.5 mg, some at 3 mg. As long as you stay at that dose, you should be fine.
Posted 8/29/2015 8:02 PM (GMT 0)
I was just prescribed LDN and I was wondering what to expect.

Guardian7 you mentioned that 4.5mg was too much?

How does one know if it's too much?

Are there side effects or issues I should look out for when starting this?

Any help or information would be greatly appreciated.

Thank You!
Posted 8/29/2015 11:07 PM (GMT 0)
I tried it for about 3-4 months at 3.5. It worked well for a time, but the dose was probably too strong because along with weirdly vivid dreams, I lost my appetite...not good as I was underweight. I still want to try a lower dose in the form of a cream. Good luck!
Posted 8/29/2015 11:27 PM (GMT 0)
Bear, I had some nausea when I started, especially raising the dose. I had some sleep issues and a few vivid dreams, but I took the dose right at 9 p.m. so that it wouldn't affect me so much.

I would start at a low, low dose. I started at .5 mg, in liquid form, then slowly went up .5 mg each time. i did lose a bit of my appetite, but it wasn't severe though.

Liquid is the best way for me (50 mg pill in 50 ml of water). It's cost effective. Whatever solution you use, I would raise the dose slowly. I know that helped me.


Hope this helps!
Posted 8/30/2015 12:21 AM (GMT 0)
Tried it for the 3 months solid. No difference:(
Posted 8/30/2015 7:58 AM (GMT 0)

Sibby said...
Inactive pancolitis UC · Last scope: Zero inflammation

That is impressive. Are you also taking Imuran or were you intolerant ?

The more I read about intermittent fasting, the more I want to keep reading. I think this is why I used to thinking drinking worked. I would normally not eat until passed noon the next day so it was probably more that than immune suppression.
Posted 8/30/2015 1:28 PM (GMT 0)

Sibby said...
Bear, I had some nausea when I started, especially raising the dose. I had some sleep issues and a few vivid dreams, but I took the dose right at 9 p.m. so that it wouldn't affect me so much.

I would start at a low, low dose. I started at .5 mg, in liquid form, then slowly went up .5 mg each time. i did lose a bit of my appetite, but it wasn't severe though.

Liquid is the best way for me (50 mg pill in 50 ml of water). It's cost effective. Whatever solution you use, I would raise the dose slowly. I know that helped me.


Hope this helps!


Thank You Sibby!

My Gastro prescribed it for me which I was super surprised and happy.

My pharmacy compounded the liquid for me and I started at 1.125mg day 1.

Day 2 I took 2.25mg

Last night was day 3 and I took 3.375mg

I know most have said to increase it week by week but I have less patience then most:)

I plan to stay at 3.375 for a bit and see if that is my sweet spot.

Contrary to all I've read, it seems to make me pretty sleepy very shortly after taking it.

The big questions for me is....How many days did it take for you to see any of the side effects? Such as the dreams etc.

Is it something you noticed immediately or is it something that took time the more the med started working?

I believe it has begun to help already after only three days which is very encouraging at this point.
I have read that it continues to improve the condition as time goes by so I'm very curious as to my results as the days roll on.

Thanks Again for your input!
Posted 8/30/2015 4:29 PM (GMT 0)
Guy, I can't take Imuran (including 5ASA x_x). I had to stop taking it in 2011 because it stunted my bone marrow, lowered WBC, and affected my platelets. Also, I had to be tested for cancer. My doctor let me go off of it for a month, then went back on it at 25 mg (the lowest dose, I believe), but it continued to lower my WBC.

At the beginning of taking LDN, I went gluten free. I remember Inso telling me to do that. It helped a bit, but it didn't really put me in remission. I introduced gluten back into my diet a year later. I haven't had a problem with it since then, unless I eat something that I know will affect me, like a heavy-sauced salad or a lot of cheese.

I tried fasting and other diets, but nothing really helped. I had some problems around last Christmas because I lowered the dose right before a surgery, but I didn't raise it after, so I had some symptoms. But right now, I don't have anything––no pain, cramps, blood, loose stools, or mucus.



@Bear,

Oh, wow, I'm impressed. My GI just started to acknowledge my remission, even after the scope (which was about a year or more ago). I find liquid is best because you can raise or lower your dose quickly. I don't want to fork out $60+ every two weeks with the pills, so I make the dose myself.

If the dosing doesn't affect you (with any side effects), then go with it! I know it doesn't affect some. But it did me, lol. See how the dose at 3.375 mg is for you, then go from there. Within the first week or so, I knew it was giving me side effects––vivid dreams, nausea within the hour of taking it, and loss of appetite. Within the month and a half, I found that it was helping me.

No problem :)
Posted 8/30/2015 4:35 PM (GMT 0)
Sibby how long have you been on it?

Also is it the only medication that you are taking?
Posted 8/30/2015 7:08 PM (GMT 0)
I've been on it since late 2011, early 2012. Yes, it's the only thing I take.
Posted 8/30/2015 7:10 PM (GMT 0)
Thank you Sibby!

I'll keep this updated for others to view.

Hopefully it may help someone.
Posted 8/31/2015 3:14 PM (GMT 0)
I have been on it for a little over a year and it has done wonders for me as far as upper digestion is concerned. I used to suffer bad from morning nausea which would cause me to vomit almost every morning. Once I started LDN it went away, if I stop it comes back. Now I'm not sure it does much for anything lower in the digestion for me, but I think if I stop any issues higher up it can only help as things progress down through the digestion track. Before I started it I was in a minor flare I couldn't kick completely for about a year and half, I started LDN and WOO a couple months earlier and between the two and my standard 3 Lialda a day I have been in perfect remission ever since. Considering I always took up to 4 Lialda a day with no improvement for over a year, I know for sure between the WOO and the LDN it is working. With that said it still took about 2 months to fully achieve remission though.
Posted 8/31/2015 6:53 PM (GMT 0)
I am starting to see some loose stools, bloating, etc. my blood work is next week to see if there are any negatives with 6mp. If there are I am going to get on this ASAP! Always wanted to try it. Biologics ruled out for me too.
Posted 8/31/2015 7:23 PM (GMT 0)
Bud Gut, it was the only med that I was on so that is why I knew it was helping. I have heard it helps with upper digestion, but I haven't heard a lot of that though.

Yeah, it took about two months for me. I noticed it started to help within two weeks, then I found a great improvement within the month. At two months, I was normal. I'm glad it helps (if it is helping. You never know) :)

@DMC, yikes :/

I'm on the same road as you are. I can't take any biologics, not after Imuran. Hopefully, you don't have any negative results. Good luck!
Posted 9/3/2015 3:50 PM (GMT 0)
Here is a quick update and brief history...

I was on Lialda for about 4 years and for some strange reason I began to get bad side effects and it seemed to just stop working on top of that. Prior to Lialda I had the same good run with 6mp for about 3 years. Before 6mp & Lialda, I tried every standard med (except a biologic) for UC throughout the years with little relief along the way and way too many days of just feeling crappy from the meds and the side effects they come with.

On to my LDN update:


Tomorrow will be 1 full week on LDN for me.

Right before I started taking it I was in a bad flare. LDN was my last hope as my GI was talking about biologics and as with many, I did not want to start that mess at all cost.

After 3 days of taking 3.375mg, I began to feel that false sense of relief that most of us get after a good day or two. So of course I was very skeptical that it would just be a false sense of relief once again.

Day 4 and things continued to feel just a little better.

Day 5 and now I'm feeling pretty good about this decision and glad I didn't have to jump through hoops to get it prescribed.

Today is day 6 and I will say that anyone who has not tried LDN should do whatever they need to in order to get their hands on it. (with or without gastro consent) I have heard that it may not work for some and that is a darn shame to say the least. I am still in denial of one day waking up and having my nightmare start all over again however, what is super encouraging is the fact that those of you that have been taking it for a long period of time are still reporting awesome results. Thank you guys for sticking around even though you are feeling well and updating us just beginning our journey with LDN.

I am taking the liquid form and it is super easy to tailor the dosage that may work best for me. At this point I have no real side effects to speak of except an occasional dream or two but honestly.....who cares about a dream or two.

Once again...those of you on the fence or just procrastinating about trying it....just think about all you've gone through to date and then ask yourself the question "what do you have to loose?"

I hope this helps!

Post Edited (bearjohnson) : 9/3/2015 9:56:47 AM (GMT-6)

✚ New Topic ✚ Reply