LOW DOSE NALTREXONE

I think that some of my text fell out when I edited my previous post. I first mentioned what kind of pain I used to get app. twice a month, the pain from having partial obstructions, this kind of pain is unbearable and severe, and the partial obstructions used to show up when the inflammation got worse. On a daily basis I had the usual and for most of us familiar pain and discomfort.

LDN reduced all this daily pain after my first pill. The inflammation got reduced during the following weeks and month, and my obstructions stopped showing up. Haven't had any partial obstructions at all for more than two years now.

LDN is made from Naltrexone. This Naltrexone has been given to patient groups for 30 year in BIG doses (from 50.0 mg - 300.0 mg)

Low Dose Naltrexone is normally taken from 1.5 mg each night after 10.00 p.m.
I have learned that you shouldn't use LDN and NARCOTIC pain meds.
You are allowed to use all other pain meds. Just not narcotic pain meds.

No one can tell how many out there it doesn't help. We only know that it gives remission to 40 - 50 % and symptom relieves for more patients.

It's wise to try this medication with 5 - MP medicines, or try LDN as a stand alone med, and then add another med / and-or a diet like gluten free diet or the SCD (which also is strict gluten free), if you want.

I can't use other medications than LDN due to another diagnose, but I am allowed to use a low dose of prednisone for some weeks (starts at 40.0 mg and gradually down to zero) if I get signs of a flare starting.

I am one of them getting a lot of symptom relieves with Ldn, but I am not sure if I am ever getting a 100 % remission.

Endeavor, thanks a lot for sending me the papers, haven't seen them yet as they are sent to my work. /Bee

Hey Bee, I am normally on the colitis board, but I just started ldn 3 days ago, and I'm really excited. I have a colitis diagnoses, but I recently had an abscess and 2 fistulas that made my doctor think it might be crohns though I don't test for markers. I noticed in the first few days that the pain building in my fistula has settled (though it comes and goes normally, so I'm not chalking it up to ldn)

So great to hear success stories, I'm hoping for a health bump, though remission would obviously be fabulous. I'm just glad you are getting the word out.

I haven't even had a cold since I've been on it (knock wood LOL).
re pain meds: if you take it before bed, you're okay to take the occasional pain med during the day. I do it all the time.

J.J,
if you go to gazorpas site, you will find info on LDN to bring to your doctor. Read thoroughfully through the document at gazorpa "what you may inform your doctor and what you should avoid to do"....

Endeavour08 has the papers on dr. Jill Smiths phase II trial closed in April one year ago. You may ask her for the papers. Those are the newest documents on LDN and probably one that may convince your Doctor.

astar, I hope that you'll find that LDN is helping you asap, but please, don't get dissapointed and stop using it, because often the change is coming gradually and sometimes you have to sit down and try to remember how all your symptoms was while having really bad days in your disease changing cycle.

LDN often needs time to adjust, so why not use your regular medicines with LDN? LDN may be of great help to use as a combo med, and it will often keep colds and sinus problems away as njmom says. I haven't had a cold for more than three years, and I promise you, I had really tough and long lasting ones prior to LDN.

LDN may as well heal your abscesses and fistulas. But it needs time. LDN is not a quick fix, and it's definately not a cure, but it's a great medicine using long term, with no side effects., or just a few the first weeks. Side effects are often: sleep deprives (hard to fall asleep, or waking up the first nights: reason: you'll get increased endorphines and a lot more energy.

I would suggest that all the Crohnies having other auto immune diseases and fibromyalgia should at least try LDN for 5 -6 months, I guess quite a few would love what it could do! ;-)

Be prepared that they still might not go for it and you may need to go to your primary care doc if you really want to try it. I went armed with the study and my GI doc would still have nothing to do with it. I ended up getting my script from a family doctor.

I just saw a short video today on webmd.com of a Crohn's patient who was in one of Dr. Jill Smith's trials. In the video Dr. Smith also speaks briefly. Funny to put a face with a name!

astar, that's great, LDN is really great if it hits in. LDN did so for me during the first months, and I had actually great changes the very first day after my first 3.0 mg pill. I had a low grade fever that was gone the day after, I had a distended tummy that became normal, I had pain every day after dinner, and had to use pain pills to cope. The pain was gone the first day. During the following weeks my diarrhea gradually were less and less problematic, just need to go once and sometime twice a day. A big relief in all.
My blood values changed and my anemic face got it's color back, I really looked healthy. I remember my eyes were always pink-red, haven't had that either for 4 years.

What I have found is that LDN hits in very different in everyone. The last problem I got rid of was the hard cramps in all my muscles. I do think that these cramps follow how much diarrhea I had at any time, I guess the cramps follows a general dehydration.

But I have had small flares. LDN has not kept my remission on bay all the time. While feeling a flare was arriving I arm myself with prednisone and take it for a few weeks. From 40.0 and down to 5.0 mg each morning, and LDN in the evening. Have used LDN when at 20.0 mg prednisone, haven't dared to take the big gun 40.0 mg and LDN in a combo.

If you want to learn more on how other people have coped with LDN and Crohns, or LDN and cancers or LDN and U.C, or fibro or MS, or other autoimmune diseases, just go to:

www.ldndatabase.com

Thanks Bee!

I have a fistula to deal with too, so I definitely can't see ldn being the answer to all my issues, but it's a good tool. I'm hoping to get the crohns/colitis in solid remission so I can have repair surgery in the next few months. To get even this amount of relief has been reason to celebrate. I'm hoping for more, but it's already been a major improvement. I still take colazal. When I started I was in a very nasty flare, and I did consider some pred to get me going, but got on track without it. Good info in case of future flares though...

Hi all! I asked my Canadian Doc if I could try LDN and he said NO! I'm now searching for someone who will prescribe some of it for me to try! I've tried everything except Remicade and since that is made from a mouse antibody I would rather stay clear of it! I live in Vancouver Canada so if anyone out there knows someone who will write me a perscription for it I would be very greatful, thanks! Kate

To Kate548,

Greetings fellow Vancouverite, I have an appointment with my doctor tomorrow and I will ask about LDN and see what kind of a response I get and I will post it.

That's a good point Mark. I am on Fentanyl and Hydrocordone. I also have latent TB and Lupus. My liver is finally starting to get better so I was thinking LDN> There is a whole group who take LDN on facebook but I wanted other opinions on it. Does anyone know if it's hard on your liver? I asked my GP about it and he wasn't willing to prescribe it. It just seems less dangerous to me than humira since it gave me Lupus, Latent TB, Psoriasis, Fungal Growth (surgically removed and grown back), migraines and liver damage. I haven't been able to treat anything for a couple of years because of my liver. Just existing.

I've been on LDN for 2-3 years now, It helps as my inflammation went from a 6/10 to a 4/10 in severity. I feel like I get sick less on it and have not had a sinus infection (which I used to get often) since I've been on it. Currently it's the only drug I'm taking.

No, everybody has not moved on to biologicals. I don't post because not much is changed - my daughter is still in remission (confirmed by both labs and lack of symptoms), on 4.5 mg naltrexone, daily, and 4 grams daily of Pentasa.