HealingWell
Search Close Search
☰

low dose naltrexone

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 7/7/2013 8:03 PM (GMT 0)
Has anyone on this forum used low dose naltrexone? If so, what dosage are you taking? Side effects?? Is this drug available in the US? I know nothing about it and want to know more.

Thanks!
Posted 7/7/2013 8:17 PM (GMT 0)
ya, someone on here I think is the expurt - I somewhere out of north ca -

stay tuned -

Posted 7/7/2013 8:18 PM (GMT 0)
thank you--soystud!
Posted 7/7/2013 8:20 PM (GMT 0)
I have taken it off and on (I know, not effective that way.)
I started at 1 mg and increased to 4.5 mg, which was the recommended dose a couple of years ago.
Seems like now they are recommending less, so when I take it I take 2.0 mg.
Some people are even on ULTRA low dose LDN.

Only effect I have noticed is vivid dreams...not nightmares.
Posted 7/7/2013 8:23 PM (GMT 0)
geeker- when you do take it regularly, do you feel that it helps your UC? Did you find it to be difficult to get your doc to prescribe it? I'm in Oklahoma....I have no idea if I can access this drug locally...do you order it through mail or what? Thanks for your response!
Posted 7/7/2013 8:28 PM (GMT 0)
My doc prescribed it when I asked.

He had read of it himself.
Wrote a regular RX for it.
50 mg tablets I "compound" myself by adding to 50 ml distilled water (making a 1mg/ml solution)
I also have Hashimoto's thyroiditis and it's supposed to help with that, too.

Problem is the 10pm-2am dosing...I am rarely awake at 10.

I have noticed no effects other than the dreams, but to be fair, that it probably my fault with the inconsistent dosing.
Posted 7/7/2013 8:33 PM (GMT 0)
What about cost? Is it expensive or does your insurance pay for it (assuming you have a payor source)
Posted 7/7/2013 8:41 PM (GMT 0)
I pay the generic copay of 8.00 for 30 pills (a month supply for someone taking 50mg/day) That makes a whole lot of LDN.

If you have it compounded it is way more expensive. My local compounding pharm is out of my price range.

You might want to look into the LDN Yahoo group, there's also one specific to LDN for IBD.

(I have Blue Cross...they have never questioned the need for the RX)
Posted 7/7/2013 8:42 PM (GMT 0)
i tried it for 2.5 months in the summer of 2012.

i paid for it out of pocket from an online source. i used 50 mg tablets and dissolved them in water to take with a syringe. it was really foul tasting.

i started at 1 mg and moved up to 4.5 i think. it's been a while since i took it but i did the recommended dosage. didn't notice any differences in my UC, but had a really hard time sleeping. i took it between 11 pm and 1 am and was usually up all night. i ended up stopping it before a colonoscopy procedure because of the anesthesia and crap they give you. i never started it back up again because i didn't see a point.
Posted 7/7/2013 8:45 PM (GMT 0)
Thank you so much for this info! I will def look into the yahoo group. Good to know about BCBS because that is what I have. I have also posted this same question on the Crohn's forum. Thanks again!
Posted 7/7/2013 8:46 PM (GMT 0)
bananagirl--thank you for your info!
Posted 7/7/2013 8:50 PM (GMT 0)
Good luck, freckles.

Arm yourself with as much knowledge as you can regarding LDN.
I hope you have an open-minded GI...
Mine saved me the trouble of having to convince him myself by being knowledgable in emerging "alternative" therapies. I had plenty of info printed out for him anyway, just in case.
I think naltrexone is probably the least toxic thing I've been prescribed for UC. Now if I could just stay awake until it was time to take it. (some people do daytime dosing, which I may try eventually)
Posted 7/7/2013 8:55 PM (GMT 0)
Thanks geeker...I already have info printed out just in case...although, my doc is very much into alternative therapies, I am not sure if he knows much about this drug. I am definitely open to almost anything in order for my normal UC life to become a normal life without UC. I have realized that having UC is a lifetime process of change.
Posted 7/8/2013 12:19 AM (GMT 0)
freckles,

LDN does work.

It put me in remission.

If you want more info, check out the post on UC resources, there's one all about LDN.

And I'd be glad to answer any specific ones you might have as well ( you can email me if you like).

You can also do a search on the healing well forum and put in LDN, and you'll find several threads.

 Here's one, and you can see this is part III:

https://www.healingwell.com/community/default.aspx?f=38&m=2338980&p=6

Posted 7/8/2013 1:21 AM (GMT 0)
I'm so glad you responded InSoFla! Thank you...I will be reading and you might just get an email from me too!
✚ New Topic ✚ Reply