LDN success so far. Only been on it 2 weeks but felt I had to share.

I have had UC for 5 years. Went into remission for years off 1 Lialda per day then some relatives came to town and the dentist told me I have to go on antibiotics for some tooth infection and started flaring ever so slightly for 4 months straight. It was not a huge flare, maybe 1 or 2 drops of blood daily, but canasa and upping my Lialda wasn't doing it which normally has in the past whenever I sense a flare. I googled Low Dose Naltrexone and found an online Dr and she had some Pharmacy send it to me.

I was shocked that the very next day off half a dose, I am talking about 2.25mg the blood and mucus stopped and my stool became well formed. I stayed on that does for a few days and then upped it to 4.5mg. The results have been absolutely shocking.

I keep trying foods I haven't eaten in years and I have no effect at all from whatever I eat. The stool is perfectly formed like before I had UC back in 2010. I know it has only been 2 weeks but these 2 weeks have been the best two weeks I have had in 5 years. I feel like I am cured. It is so exciting to be able to eat whatever I want again and also see consistent normal formed stools.

I was told by the Doctor that Naltrexone has a less risk profile then Aspirin. I just wanted to share this with everyone here, haven't posted in probably 3+ years but felt I had to. Thanks for letting me share.

Glad you're doing well. Keep up what's working!

It was ldndoctor dot com

I ate a chocolate chip cookie, sushi with wasabi and soy sauce, peanut m&m's and potatoe chips over the past few days and it has no effect on me. Any one of these food items would have sent me into a flare before LDN. It's like I am 15 again! This drug should be at the top of every single GI's list before lialda or any of that other stuff. This has been the absolute most effective treatment I have ever had over my past 6 years. My wife can't believe it. I can't believe it.

From what I understand is that it only works on about 50% of the people that try it. I wouldn't care if it worked on only 10%. If it fixes your UC then maybe you will get lucky and be part of the 10%, if not, then you tried a perfectly harmless drug. Thankfully I was part of the 50% it works on. It truly is amazing.

Great news! It worked for me too. However, LDN is not a magic bullet for everyone.

I am particularly impressed that LDN worked for you after 5 years of suffering. I always assumed my success was due to me starting LDN after only 6 months from DX. The guy across the street from me tried LDN after 10 years with no success.

I wonder if someone knows if LDN success is related to time lapsed after diagnosis.

I think it was around $200 for the Dr to give me a 45 minute consult on the phone and the script. Then $50 for them to send me a 3 months supply.

50% are pretty good odds, nearly as good as anything else - and way less expensive.

Do you take pills or is it transdermal? I always wanted to try LDN, but never found anyone who would prescribe it. I definitely would have done the online consult and given it a try, but it's too late for me.

Glad to hear the LDN is working!

LDN is thought to work by raising natural endorphin levels. I've been using other methods to raise endorphin levels. These other ideas appear to be helping my colitis condition. At least I haven't been ill the last few weeks, along with seeing improved energy levels.

kich said...
UPDATE! The pharmacy that sent me the first month of pills lost their license to ship to my state so the Doctor gave me another compounding pharmacy to ship to me. They sent me the pills in capsules and not tablet form. I started flaring within a few days and I remember reading online somewhere else that this happened to someone else when they changed compounding pharmacies. I let the capsule sit in a glass of water overnight and it didn't even dissolve. I know it is designed to dissolved in stomach acid but still I could tell that was the culprit so i simple opened up the capsule and dumped the LDN in my mouth and the next day I was pooping like a 15 year old again with no blood or mucus. I told the Doctor and she gave me another pharmacy that will send me 3mg tablets that I can cut in half cause I don't think i even need 4.5mg. I dump just half the capsule in my mouth and it works like magic.

Good to know.

Were you diagnosed with mild UC? I also wonder if the severity level affects the response?

I did read in one study that LDN was effective in 20-30% of UC patients so it's worth trying.

LDN did not work for me, but doesn't mean I wouldn't try it again.

What fascinated me about LDN was how it worked within about 16 hours. I went from pain, blood, mucus, loose stools, to totally well formed, no blood, no mucus, no pain. I also read somewhere if it stops working to take a few days off to let it really flush out of your system then start taking it again because even though the half life is around 3 hours something else happens with some people where it lingers in your system and LDN isn't designed to work like that, you need the rush of it into your system to block the receptors for it to leave fast and get the rush of endorphins? I am not exactly sure how to explain it but it has to be absorbed into your body fast for it to work.

kich said...
What fascinated me about LDN was how it worked within about 16 hours. I went from pain, blood, mucus, loose stools, to totally well formed, no blood, no mucus, no pain. I also read somewhere if it stops working to take a few days off to let it really flush out of your system then start taking it again because even though the half life is around 3 hours something else happens with some people where it lingers in your system and LDN isn't designed to work like that, you need the rush of it into your system to block the receptors for it to leave fast and get the rush of endorphins? I am not exactly sure how to explain it but it has to be absorbed into your body fast for it to work.

That's interesting. I guess you are very sensitive to it. I heard it can take weeks to start working for some.

Any side effects? Does it maintain remission or do you have to stay on it for it to cont working?

Oh and yes I have to take it daily to maintain remission. Maybe in a few years I will try to stop, but it's going so well now why risk it?

I am curious about LDN and really want to give it a go.

Has anyone asked their GI doc about this? Would it most likely be fruitless to ask my GI doc if he would consider prescribing this? It seems so safe, but I've heard some more "traditional" docs haven't even heard of LDN. Just wondering if I'd have more luck talking to a functional doctor about LDN or if others have had success with getting a prescription from their GI doc.