Low Dose Naltrexone

I just started it a few days ago. No insomnia (the side effect I read about), so I'm happy about that!

Thanks ivy I've copied the one's I need into a word pad format so I wont need to go searching for them in the future.

While my daughter was on one pill of Entocort (3 mg), she started taking 4.5 mg LDN. Then used the LDN to taper off Entocort, which she had been on for years. The most notable result of the LDN, aside from helping her taper off Entocort, was that it reduced her sed rate from 8 to between 2-4.

No side effects, except for the first two weeks -- after a few days on LDN, she started feeling very fatigued when she came home from work...went straight to her room for a nap (and this is somebody who almost never takes naps). She also had no appetite, some gas, and rumbling in her abdomen. But these side symptoms settled down by the end of the second week. We assumed her gut was getting used to the LDN - perhaps it was killing off bad bacteria?

She has been on only LDN for at least a couple of months. Also continues to follow the SCD diet, except for two foods -- she does eat rice and potatoes, which are not allowed on SCD.

It looks like she might be in remission but only a colonoscopy can tell for sure -- not surprisingly, she is not jumping at the chance to do a scope.

 

My 16 year old son has been on LDN since the middle of August and is doing very well on it.  He did have 1 or 2 nights of dreams whenever he upped his dose (now at 4.5mg) but it never kept him awake at nights and he did not have the fatigue that others have talked about.  He also started the SCD diet about a month before the LDN.  He now has 1 bm/day - still has to watch certain foods on the SCD - he cannot do any dairy except limited amounts of cheddar cheese, I make the yogurt out of organic coconut milk. 

He was diagnosed with Crohn's in March 09, his imflammatory markers were 89 at that time (should be below 12), they came down to 46 in August, then from August to September (5 weeks) they came down to 12.  His hemoglobin also went up to normal within 5 weeks of taking LDN.  He steadily improved from August to December and then had a bit of a setback - not a typical flare as he still only had 1 BM/day, but runnier and more urgency in the AM.  From my research I understand that is quite common with SCD to have a 4 - 6 month setback - and he was right at 4 months, that took about 2 weeks to sort itself out and now he appears to be back to (his) normal.  He does still have a fistula that is draining but that has been steadily getting better also, in July he still had a fairly big abscess - by September it was almost gone, now it is gone and the fistula is slowly shrinking and becoming less painful to sit on.  

Dave,

Would you mind sharing some additional information? I have started taking it recently and curious as to what happened.

Three years ago I was doing okay on Imuan and Entocort but I thought I would give it a try. By the end of the first month I was off the Entocort. By the end of month two I was off the Imuran and heading for remission. I was doing well. Then I began losing the sight in my right eye. I was treated for nearly a year for posterior scleritis, another autoimune disease. My eyesight in that eye was 20/400 and it was now attacking the other eye.

Now, two years later I wear prism glasses ; must take pred, Humira, and Imuran. I can onlly go maybe two months before I need Iron or blood due to occult bleeding. I have had 12 units of blood and four Iron infusions in the last year. That's why I am sitting here at CC.

I think the worst part of switching to LDN is stopping the other meds.  The other is that one G.I. said "sometimes strange things happen when you stop Imuran."

Dave D

  

ChronnieMan, I hope you are doing well. Have you noticed any improvements while on LDN?

Why only 2 mg, when the recommended therapeutic dose is 4.5mg LDN?

Have you had blood tests done recently to make sure the LDN is helping? Also, that it is not causing any hidden side effects?

 

I am so sorry what happened to you Dave, and you'll probably never know what actually was the cause of your scleritis. This eye inflammation of yours might also develope from Crohns disease itself, as far as I know this is one of the extra intestinal diseases that may happen from time to time.

Here are some good links to learn more about LDN (that still is working really well for me, have now used it for more than 2 years)

www.ldndatabase.com click on Crohns and read what other have found out.
www.ldninfo.org
or go to some of the yahoo groups, register as a member and just read what other have found out about LDN. There is one group for us with IBD.

Also:
for inspiration, and to find out WHY doctors don't know too much about it, look at Dr. Chris Steele's video:
http://www.youtube.com/watch?v=5p5nhzP2OaI


You don't have to go gluten free to use LDN, you don't have to use the SCD. For me and many others LDN works anyway, but I do lay off sugar, because sugar always increases inflammation a LOT. I also don't eat too much wheat flour. It's said to trigger inflammation as well. Read about this at Dr. Mercolas sites.
Only those that still have the same problems while on LDN are suggested to test for candida overgrowth (LDN have problems working if a candidiasis is found), some others are suggested to try avoiding gluten and sugar for a month to find out if this is an underlying problem, others choose to use the SCD in combination with LDN and are doing super well on that combo. / Good luck

My 14 year old daughter also did well on 3mg LDN for almost a year, then relapsed in November after cheating for a few months on the SCD diet. She is back down to 10mgs of Prednisone and started back on the LDN last night. Hoping she can stick to the diet as I think it was very important for her remission. There is alot of very informed people on the LDN/IBD yahoo chat site. They were very helpful to me many times when needing information and advice. My daughter had no side effects on LDN except good ones. She gained 12lbs and grew 2 inches in only 4 months. I hope we can repeat that this time around as she has some catching up to do with her weight and height. Diana

My bad times really started wth the scleritis diagnoses after coming off LDN. Understant that since I have had two hard years of Prednisone, Remicade, and Humira. I have had numerous transfusions and Iron infusions for my acute anemia.
Currently I am under study for a full permenant collectomy with ileostomy

Obviously I can not precisely blame it on the LDN, but while it might be nice to be a pioneer, remember that some of them were shot. I'll for one will not try another off label drug, if I survive.
Dave D

I am currently on 2MG. Been taking for about 2 months now. Definite improvement after a month taking it. I just recently started taking Vitamin D (~1200 - 1400 IU/day). The doctor recommended a certain probiotic called Florastor, but haven't taken any more since the samples ran out.