LDN has stopped blood and stopped severe flare

st_uc said...

Sibby said...

iPoop said...
I believe LDN is made by a componding pharmacy (not a simple riteaid, walgreens pharmacy pickup). More hoops, more obstacles but something to consider within that context for those who want to "think outside of the box", so to speak.

Not all the time, thankfully. Homemade LDN is the cheapest solution, which I use. I hope there are more studies of it, though.

DO you use LDN? If so what is your dose ?

Mhmm. I've been on it for several years and have only stayed on 3 mg, liquid. I don't have it compounded, though. I make it up at home.

Most regular GI's wont prescribe for it as it is not approved by FDA for crohns. This drug has a orphan drug status by FDA for crohns and no company is ready to invest money for further clinical trials as this is a generic drug and used for substance abuse.

There seems to be good incentive for countries with socialized healthcare (Canada, most/all of Europe) to study effective and low cost treatments like LDN because it will lower their healthcare costs nationally. Not true in the US because Big Pharma sponsors most drug studies.

C'mon Canada and Europe, let's see some LDN studies to see if it actually works and on what diseases.
I vote for Germany, they have a history of being friendly to non-RX supplements and treatments and they have the money for state-funded studies whereas many countries are struggling financially.

Wonderful to hear. Glad the LDN is helping your colitis.

I've personally had good success with improving not only my stomach condition with diet and energy/ acupuncture ideas but also with improving my energy levels. Fatigue and mental fog can be a huge issue for me.

I only mention as I've been reading about the work of Dr. Meg Patterson recently. She created a TENS acupuncture machine that helps drug and alcohol addict overcome addictions without experiencing withdrawals. Dr. Patterson is best known for helping famous British rock musicians such as Keith Richards of the Rolling Stones, Pete Townshend of the Who, Eric Clapton, etc.

What interested me in the doctors work is the potential similarities to LDN. Naltrexone of course was originally designed to help addicts overcome addictions. LDN has similar effects, just for a shorter period of time.

What caught my attention is Dr. Patterson's mention of her TENS machine increasing endorphin levels. This is the same theory mentioned most frequently on how LDN might help with autoimmune diseases. I know many items can increase endorphin levels such as chocolate and sun exposure. it did make me think that the natural energy/ acupuncture I'm doing could be helping me also.

Anyway, a little on Dr. Patterson's work can be read in this article. In the write up she also brings up the idea of increased endorphin levels.

"When you first meet 77-year-old Dr. Meg Patterson, you may not
believe that she has been involved in shaping rock history by saving the
lives of several of rock’s jet-set junkies"

http://www.wnd.com/1999/08/3778/

BeeSting was a prolific poster on the Crohn's forum who provided a lot of good information about LDN. Unfortunately she quit the forum over three years ago but some of her posts are still around:

BeeSting said...
LDN could even be a first choice and not a last resort, IMHO. I started using it in 2007, and have been on it all the time. With GREAT improvements. It worked from day one for me, the first day after my first pill on 3.0 mg I had no pain and no bloating. Diarrhea went away during the first 3 weeks. Had always a low grade fever prior to LDN, it went away immediately.

Have to add that LDN doesn't work at once for everyone. It depends on what phase the disease is in, if you're in the middle of a flare, you could use prednisone to get better, and when on 10 mg pred, you could add LDN. Stay on 10 mg for a longer time if neccessary. Start with 3.0 mg, and increase the LDN dose to 4.5 mg. Many with Crohns finds that it takes up to 3 -6 months before all symptoms are better, but expect that you'll gradually get improvements.

My disease is considered severe, I used to have obstructions twice a month, now I have one a year. My obstructions were terrible, vomited for 10 - 12 hours, cramps and severe pain. Happy I don't have to deal with that. I am glad that I am pain free, that I can work full time, that my medicine is at such a low cost that I can afford to live.

Did you need to alter your diet in order for it to work, and if so, how?
No, LDN worked even without changing my diet. But I prefere to avoid gluten, because I am convinced that gluten is one of the bad guys for all with auto immune diseases.

Did you take it with other therapies?
Have used prednisone during small flares / or not exactly flares, but after having an obstruction. Have always used it as a crash treatment, within a short time frame.

Did you fail most other meds?
Haven't tried other medicines that prednisone for 3 months only. Got my diagnose in 2007, had pred for three mos then LDN as the only treatment. I am really happy with LDN and am alw
ays informing people to give it a try. As a First make no harm.

Go to fb and the group Got Endorphins to learn what 800 other users are saying.
Go to youtube and search LDN, look what this English TV celebr. doc says:
http://www.youtube.com/watch?v=5p5nhzP2OaI

All treatments should in a perfect world be evaluated equally. Reality is we live in a less than perfect world.

Generally 60-70 percent of uc patients respond to mesalamine, 60-70 percent respond to immunomodulators, and 60-ish percent respond to biologics like remicade. about 20-25 percent ultimately require surgery, the non-responders to everything.

LDN is another option but without a lot more research, I cannot not see it being recommended by gastroenterologists over immunomodulators and biologics. We don't know it's effectiveness in large double-blind, placebo controlled studies. I'm not sure LDN is as strong as remicade and is a valid substitute. It'd have to be proven. I certainly understand your enthusiasm as it works for you. Everyone is different and every case of uc has a different severity.

Coffeemate said...
LDN cannot be patented so there will never be double-blind, placebo controlled studies. But we do know that, unlike most meds, it has very few side effects. So there might be little harm in trying it.

I thought off label use of a drug is legal. Naltrexone is FDA approved for de addiction. Then why are doctors reluctant to use it as off label. Try for a month or two and if it does not work, then stop it. Given that why are doctors reluctant to use it?


Secondly, people who are planning for surgery should consider these drugs like LDN or FMT. They may lose their colon when everything has failed. It is a good time to try something else and see if they save can their colon when everything else has failed.

Post Edited (st_uc) : 7/11/2016 10:23:18 AM (GMT-6)

Have you checked belmar ? Did you have any side effects?

If you really want to save money, do the home made one


https://www.youtube.com/watch?v=bOekLFIvR7I

Which other compounding pharmacy do you use apart from skips and belmar?

Andrina said...
st_uc, I'm glad you're doing well. I agree, everybody should look into alternatives. What's there to lose?

For me, LDN didn't work. I got my LDN from Belmar.

Totally agree. LDN may not work for everyone. But any alternative is worth a shot and you never know it you try it.

What was the dose of LDN you used?

If pill form of LDN does not work, then see if you can switch to trans dermal cream or liquid form.

I'm sure you know about the various tiers of uc medications mr stud, tier 1 mesalamine being a mild anti-inflammatory medication, stronger are tier 2 immunomodulators, and tier 3 biologics being a very strong medication in comparison to lower teirs. Kind of like comparing a squirt gun (mesalamine) to a fire hose (remicade) in regards to their anti-inflammatory affect. Mild cases use mesalamine, severe cases use remicade and so forth.

Whether LDN is as strong to be an equivalent replacement for remicade or immunomodulators, I doubt. LDN might be similar in strength to mesalamine. All treatments have a maximum effectiveness and should be prescribed accordingly based on disease severity. LDN could be a good treatment, a lot is unknown though about when it's appropriate. Try it and see is all can be said, without a lot of further guidance at this point.

I tried LDN after 5 failing 5ASA and 6MP. FMT gave me 1 year remission and now LDN.


My next option was remicade and I decided to give LDN instead a try. FB LDN group has kind of become my guidance as right now I'm on my own with very little help.

It makes me sad to see people not trying FMT or LDN and going for surgery. I understand these are experimental. There is a good chance these two can save your colon being removed if given a try. At least give these a try after exhausting all medicinal options and before embarking surgery.