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Who's tried LDN, and what are your results? PART III

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Ulcerative Colitis
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Posted 6/20/2012 5:16 PM (GMT 0)
boxermom so it was the LDN that put you into remission? If so that's awesome, it hasn't done it for me....yet...but I know it keeps me healthy no colds lately.
Posted 6/21/2012 2:14 AM (GMT 0)
I believe it was the LDN. Everything failed me. I started that and slowly starting improving. Was flaring for three years before.
Posted 6/21/2012 12:14 PM (GMT 0)
Box,

That's great. Another success story with LDN.

How long did it take for your remission with LDN?

And were you on any specific diet while doing so?

And for those on remicade and humira, can you tell us at what point you discontinued those vis-a-vis  the LDN?

Thank you. :-)

Posted 6/21/2012 1:39 PM (GMT 0)
I was on Remicade and Humira at double the normal doses. They did nothing for me at all. Because of the risks I discontinued since I saw no improvent. I just stuck with the LDN because I had no side effects. I think after a few weeks on it I just started feeling better over all. Things started forming up. It was a year in March I think that I started it. Can't remember exact date. I never restricted my diet at all. I could eat a saltine and be sick so I just kept eating what I wanted. Figured it if it was going to fly right back out I might as well enjoy it.
Posted 6/21/2012 4:09 PM (GMT 0)
I am on 3mg LDN (pill form) and it does nothing for me at the moment. I contacted Skips which refered me to Crystal, which in turn refered me to a alternative doctor which had LDN in his store. Just not the transdermal. He also didn't want to write me a prescription for trans. LDN which pissed me off.

So now, I'm stuck with 3mg LDN that doesn't do crap. ***
Posted 6/21/2012 6:16 PM (GMT 0)
Hi Somedude, I feel the same way about LDN it hasn't helped my uc at all! I do think it helps me not get a cold but that would be it. I've been it four different times and not one of the occasions has helped me uc. It's a bummer! I mean is my immune too BOOSTED and I'm making it worse? Or is it so run down it will take a long time for LDN to work? Skip swears by it!!! for gut issues.

I take the transdermal cream.

Linda

Posted 6/21/2012 6:26 PM (GMT 0)
Somedude,

I'm sorry the LDN hasn't helped you YEt.

Do you know what the filler is? How long have you been on it? You may need a higher, therapeutic dose of 4.5mg?

As you may be aware some people do great on oral LDN and others do great on transdermal LDN.

Therearemiracles,

Same thing goes for you - perhaps you need to be on the oral LDN, you may fall into the group that does better on that form of it.

What do you think?

Posted 6/21/2012 6:29 PM (GMT 0)
Box,

So, were you on either remicade or humira prior to starting LDN?

Posted 6/21/2012 6:32 PM (GMT 0)

Somedude said...
I am on 3mg LDN (pill form) and it does nothing for me at the moment. I contacted Skips which refered me to Crystal, which in turn refered me to a alternative doctor which had LDN in his store. Just not the transdermal. He also didn't want to write me a prescription for trans. LDN which pissed me off.
So now, I'm stuck with 3mg LDN that doesn't do crap. ***.


ThereAreMiracles said...
Hi Somedude, I feel the same way about LDN it hasn't helped my uc at all! I do think it helps me not get a cold but that would be it. I've been it four different times and not one of the occasions has helped me uc. It's a bummer! I mean is my immune too BOOSTED and I'm making it worse? Or is it so run down it will take a long time for LDN to work? Skip swears by it!!! for gut issues.
I take the transdermal cream.


Of course LDN may not work for you, everyone is different. But there are so many other options that have been successfully applied here from triple antibiotic therapy to fecal transplants. There is never one true faith or one holy treatment that is the way, the truth, and the life, lol.

The value of the forum is to see what has worked for others so we can be aware of other alternative options that we may apply for ourselves. I will always be grateful for learning about powdered psyllium seed here, but there are many others who have found it useless.
Posted 6/21/2012 6:33 PM (GMT 0)
I had been on the Humira before the LDN for a while. I used it weekly or no weekly I can't remember. It was more than most. It did nothing. I stopped bc I was pregnant at the time and never went back on.
Posted 6/21/2012 6:58 PM (GMT 0)
Hey Miracles, take both...the transdermal and the pill... 9mg...if it don't work at 9mg, it never will lol
Posted 6/21/2012 8:16 PM (GMT 0)

Hi all - just reporting in.  Well, I'm actually constipated, the LDN is sure working, the x-ray showed that I'm pretty packed.  So I need to be better to my colon.  I have been eating extra-fiber soft wheat bread, but forgetting about the fluids and lacks on the VSL#3 and psylium seed powder.  I also need to remember to push the fluids.  rolleyes   I have pain in just under my left rib; not constant; a quick come and go pain.  So I will see an MD to follow-up; but pushing apple juice; even prune juice, LOL to move things along.  No urgency or bleeding unless pushing to much on the "throne".  Sort-of wierd, but I think I'm getting back on track.  Soooo glad I found this forum and tried LDN.  I'm taking dance classes again, Zumba, yoga and just enjoying my life.

Thankyou again!!  Just be patient with LDN and be good to yourself...it's worth the wait  tongue

Posted 6/22/2012 1:20 PM (GMT 0)
I've been using transdermal LDN since January.
Have stopped using it a few times for a week or so for various reasons but have been pretty consistent.
My UC symptoms were not "severe" when I started it (no bleeding).
I've experienced improvement over time...fewer # of BMs, less urgency, ability to tolerate more foods without gas, bloating and D. Not sure if it's attributable to just LDN or going lactose free, reducing gluten intake and taking probiotics, supplements, or combination of all.

I'm happy with the improvement and will continue to use LDN and watch my diet.

Only downside with LDN: Sleep issues from time to time....more dreaming and waking during the night.
Posted 7/27/2012 12:57 AM (GMT 0)
I hope to get a prescription soon.  I was wondering what has worked best for most people, transdermal,capsules,liquid?????
Posted 7/29/2012 1:17 AM (GMT 0)
Ineedhelp,

Transdermal LDN worked great for me until I developed an allergy to the Emu oil base, and then had to switch to sublingual troche.

But you will find some variation here; some people do great with oral LDN (with sucrose filler), and others do better with transdermal LDN. It all depends on your ability or inability to absorb nutrients/meds.

That's the reason I always tell people to try one and if it doesn't work, try the other.

Let us know what happens.
Posted 12/24/2012 8:11 PM (GMT 0)
Update Wanted....

Just thought I would reach out to all of you on LDN, and get an update, please let us know how you're currently doing on LDN, and please also let us know:

- how long you've been on LDN

- which LDN are you on, i.e. transdermal vs. oral (which filler)

- what dosage

- are you following any particular diet

- how did you get your prescription for LDN

So, I'll go first:

My update: I am doing great UC-wise with LDN; am in full remission

I've been on LDN since March 2011, I started out with oral LDN and had absorption problems, so switched to transdermal LDN which put me in remission. I am now currently taking sublingual troche in butterscotch flavour. I started out at 4.5mg, and about 9 months ago lowered my dosage to 3.375mg - and am doing great. I do take a 4 night break (by stopping LDN altogether) twice a month, as I believe it helps the immune system "ramp up" and not get lazy. I get my script from an osteopath.

Looking forward to hearing from all of you LDNers. :-)

 

Posted 12/25/2012 1:30 AM (GMT 0)
Hmm.

Early December, I believe. Started at 1.5mg, now at 2mg. Some nausea when I up my dosage. I'm currently on liquid form LDN. I diluted Revia into equal parts distilled water, so no filler. Just a nasty bitter taste that I chase down with water, then juice.

Got my rx from my gp, a pain management doctor. And he is allowing me to tinker around with my dosing. I've had normal stools, beforehand, I was having more large ribbony soft stools. No blood, unless I pushed (hems on and off, sometimes)

No sleep disturbances, however, I am on sleep meds since last year, so that may lower my chances of SD.

Will see how it goes.
Posted 12/25/2012 7:23 PM (GMT 0)
Sibby,

Since you're doing well at the 2mg dosage, stay on that for awhile.

Some super sensitive people, need to find "their" right dosage, and IMO since you get nauseated at higher dosages, yours looks like it might be 2mg for now.

Please keep us apprised of your progress. :-)

 

Posted 12/25/2012 11:52 PM (GMT 0)
I started LDN yesterday. I split the 4.5 mg pill in half and take before bed. After a week I was advised to take the whole pill.

May I ask what was the first improvement you guys noticed?
Posted 12/26/2012 12:44 AM (GMT 0)
Have been taking LDN for 18 months now. To be honest, it does not seem to benefit me at all nowadays... It did coincide with a remission in my first ten months of use, but given that neither oral nor LDN seems to get me off pred now, that was probably just a lucky coincudence, and I am considering ditching it and, very reluctantly, trying 6MP (imuran dampened UC a bit years back but with side effect issues), given that my UC is a bit too indeterminate for jpouch surgery.
Posted 1/2/2013 6:00 PM (GMT 0)
Initially did the capsule build up, 1.5, 3, then 4.5. Didnt see too much improvement, and stopped. Worsened slightly, got back on, then switched about 2 months ago to transdermal. Initially it seemed to be helping me get into remission, then like everything, kinda floundered. cant tell what, if anything, its doing now.

Lately my place has been so cold in the ams Ive been having a hard time keeping it from turning into liquid...
Posted 2/4/2013 9:34 PM (GMT 0)
Just started LDN three days ago. The funny thing is my doctor suggested it before I did, so I'm happy about that. He's open to other alternative treatments given that the standards haven't worked.

- how long you've been on LDN

3 days

- which LDN are you on, i.e. transdermal vs. oral (which filler)

oral - I think lactose is the filler

- what dosage

4.5 mg

- are you following any particular diet

basically avoiding roughage foods -- nuts,veggies/fruits,etc

- how did you get your prescription for LDN

GI suggested it out of the blue and sent a prescription to a compounding pharmacy.

I'll keep you folks updated. I experienced sleep difficulties the first two times taking it but I think it's getting better now.

Post Edited (StealthGuardian) : 2/4/2013 4:39:51 PM (GMT-7)

Posted 2/5/2013 1:11 PM (GMT 0)
I stopped applying LDN in Nov. 2012 because I was experiencing sleep issues (wakefulness and disturbing dreams). Began to feel depression sneaking up and was not sure if it was because of LDN or the lack of sunlight in winter months.

I've tried to "restart" applying the transdermal cream in small doses a few times but had the same sleep issues.
I looked at info on the website ldnscience.org and noticed that LDN could be applied during the day so contacted them with a question about timing but.... received a worthless answer:
"We are unaware of any scientific data to support the use of naltrexone cream as providing intermittent opioid receptor blockade which is what LDN does." Really????

Called Skip's yesterday morning and was told that I could apply the cream in the morning between 9am and noon but would likely experience reduced affect. That's OK with me because I seem to react strongly to any drug. With the cream, the dosage is easier to control.
Will see what happens. At least the remainder of my LDN will not be wasted.
Posted 2/5/2013 6:59 PM (GMT 0)
StealthGuardian,

Glad you got the LDN.

Keep us apprised of your progress.

IAS,

Glad Skip's got you the right answer.

 

Posted 2/5/2013 11:08 PM (GMT 0)
I find if I take LDN at 9pm, instead of 1:30am, helps with my sleep issues. I'm not having them as much from starting back on it again.

But I'm not like most people though. I go to bed around 3am, lol.
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