Chrons Disease - Naltrexone

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Please let me know what you guys thinks about the following medication adn stidies? Will this really help us? Someone has any experience with it?

Tuesday, 25 September
Chrons Disease sufferers relief as new drug could help
A drug called Naltrexone that has been used to treat people who abuse drugs and alcohol could also be helping people with Chrons Disease, research has shown.

In a small study, conducted by Doctors in the USA found that some peoples symptoms of Chrons Disease (crohn,s disease) went into remission when they took the drug (Naltrexone).

Naltrexone is an opioid or narcotic antagonist and what it does is it blocks narcotics. The drug has approval from the FDA to ease drug and alcohol withdrawal symptoms, but could also be used to help people with Chrons disease.

Dr. Smith who was working on the study said "We don't understand the mechanism of how it works in Chrons disease, but there are opioid proteins on inflammatory cells, so by using Naltrexone it does reverse the inflammation and it also causes healing of the ulcers in the intestine"

As mentioned before the study was only a small one, with the patients taking one low-dose pill at bedtime and showed minimal side effects. There was about About 89 percent of patients showed some sort of improvement with Naltrexone and 67 percent had total remission of their symptoms. With these positive findings, there are now larger studies taking place, good news for people suffering with Chrons Disease.

www.lowdosenaltrexone.org www.ldninfo.org

LDN and Multiple Sclerosis (MS)
In Brief Special Notices Recent Developments Noteworthy Cases Background
LDN & Autoimmune Disease LDN Homepage

In Brief
Over the past few years, growing experience with the clinical use of LDN demonstrates its consistency in preventing further attacks in people with MS. In addition, a majority of such patients note reductions in spasticity and fatigue.

Special Notices
People who have multiple sclerosis that has led to muscle spasms are advised to begin LDN treatment with just 3mg daily and to maintain that dosage.
Patients who are exposed to undue fatigue, heat, or a febrile illness may demonstrate a recurrence of prior symptoms, stemming from an area of old neurologic involvement. These areas tend to have increased irritability of nervous tissue surrounding old healed MS scars ("plaques"). Such an episode may be very transient and may not represent a true relapse.

Recent Developments
As of May 2004: In preparing a proposed clinical trial protocol for the use of LDN in the treatment of multiple sclerosis, Dr. Bihari assembled the latest data from his clinical practice. As of May 2004, Bihari has almost 400 patients with MS in his care. Of that group he knows of only two patients who showed signs or symptoms of new disease activity over the years while taking LDN treatment. One was a 41-year-old woman who, after 18 months on LDN, had an episode of optic neuritis which cleared in 4 weeks. The other was a patient who, after 8 months on LDN, had an episode of numbness in the left leg that had not been experienced previously and which cleared after 3 weeks.

As of October 2003: The following excerpted posting, written by the chief pharmacist of Skip's Pharmacy of Boca Raton, Florida, appeared on a different website:

From: Dr. Skip
Subject: Naltrexone
Date: October 23, 2003

As I have said before, if I had MS, the only drug that I would absolutely be taking is LDN..... In 4 years of dispensing LDN, with over 10,000 patient months, I have heard of only three cases of exacerbation... this is truly a no-brainer. I would find someone to prescribe it no matter the cost or effort.

Skip Lenz, Pharm. D.

As of March 2002: Clinically the results are strongly suggestive of efficacy. Ninety-eight to 99% of people treated with LDN experience no more disease progression, whether the disease category is relapsing-remitting or chronic progressive. Dr. Bihari has more than 70 people with MS in his practice and all are stable over an average of three years. The original patient on LDN for MS, now on it for 17 years, has not had an attack or disease progression for 12 years since the one missed month that led to an attack.
In addition, 2,000 or more people with MS have been prescribed LDN by their family MDs or their neurologists based on what they have read on the LDN website or heard about in internet chat rooms focused on MS. Many such patients with MS, not under Dr. Bihari's care, use the e-mail link on the LDN website to ask questions. Many prescribing physicians do not generally know about LDN.
Only once has a patient reported disease progression while on LDN. In this case, it showed itself five days after he had started the drug. The onset of the episode had apparently preceded the start of LDN.
In addition to the apparent ability of LDN to stop disease progression, approximately two-thirds of MS patients starting LDN have some symptomatic improvement generally apparent within the first few days. There are two types of such improvement:
One is reduction in spasticity when this is present, sometimes allowing easier ambulation when spasticity in the legs has been a prominent element of a patient's difficulty in walking or standing. This is unlikely to represent a direct effect of LDN on the disease process, but rather reduction in the irritability in nervous tissue surrounding plaques. Endorphins have been shown to reduce irritability of nervous tissue, e.g., by reducing seizures in patients with epilepsy.
The other area of symptomatic improvement in some patients is a reduction in MS-related fatigue. This is, also, not likely due to a direct effect on the MS disease process, but rather an indirect one caused by restoration of normal endorphin levels improving energy.
Patients who are in the midst of an acute exacerbation when they start LDN have generally shown rapid resolution of the attack. In two patients, chronic visual impairment due to old episodes of optic neuritis has shown fluctuating improvement.
It should be emphasized that in spite of the plentitude of clinical experience described above, in the absence of a formal clinical trial of LDN in MS, these results cannot be considered scientific, but rather anecdotal. A clinical trial, preferably by a pharmaceutical company with some experience with MS, is clearly needed to determine whether these results can be replicated. If they can be, they are likely to lead to widespread use of this extremely non-toxic drug in the treatment of MS.

Noteworthy Cases
In May 2000, Bernard Bihari, MD reported four occurrences of surprisingly rapid clinical improvement in people with multiple sclerosis, presumably related to LDN use. Three were female patients for whom Dr. Bihari had prescribed nightly LDN.
As of March 2002, all four have sustained the improvement originally seen. Since those four cases were first reported, there have been several dozen more patients who have had similar relief of spasticity allowing better ambulation and relief of MS-related fatigue.
The occurrences Dr. Bihari originally reported in May 2000 were as follows:

A 31-year-old patient has a history of relapsing-remitting MS, and recently had developed not only slurred speech and trouble finding the right word (dysphasia) but also had noted weakness in one hand and one leg. She started LDN and reported that within one week her problems with speech had substantially cleared,and there was a marked improvement in her gait and in the use of her hand.
The patient who is 44 years old has chronic progressive MS (as do the other two women to be discussed below). She had reached the point some time ago where she needed to use a walker in the home in order to get around. On the third night after starting LDN, she got up and went to the bathroom without using the walker — for the first time in two years. She reports having experienced a prompt 20%-30% improvement in her balance, apparently due to decreased spasticity.
The third patient, a woman in her early 50's, reported prompt improvement in walking within four days after starting LDN, apparently due to decreased spasticity.
The fourth case came to Dr. Bihari's attention in late April 2000 when a woman telephoned his office to leave a message of thanks for him. She has the diagnosis of MS and for the past ten years has had variable visual impairment in one eye, to the extent that she has had to wear eyeglasses to mask that eye. She said her neurologist had begun to prescribe LDN three months earlier. Within two days after starting LDN she regained unimpaired binocular vision. She said that she had recently forgotten to take her LDN at bedtime for two nights in a row, and the eye problem returned — only to subside within a day or two after restarting the medication.
 

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There has been much conversation on LDN on this forum. I have been on it for over two years now and I am symptom free. It is one of two major treatments I use. The other is alternative and experimental.

In my opinion, it is the first treatment most people should try for several reasons:

It has no serious side effects.

It works about 75% of the time.

It protects you from other autoimmune diseases that often accompany Crohn's and protects from Cancer.

It is cheap and easy to use. One pill before bed time.

It has been around in its stronger form for many years. It has a long history of safety.

Here are some of the threads concerning LDN. There are probably others also.

http://www.crohnsforum.com/showthread.php?t=5054&highlight=Dose+Naltrexone

http://www.crohnsforum.com/showthread.php?t=2200

http://www.crohnsforum.com/showthread.php?t=2285

http://www.crohnsforum.com/showthread.php?t=2591

http://www.crohnsforum.com/showthread.php?t=4022

http://www.crohnsforum.com/showthread.php?t=5375

http://www.crohnsforum.com/showthread.php?t=3627
 
I tried LDN for about 3 mos. and unfortunately it didn't work for me at all. HOWEVER, after about a week of some sleep problems I had no side effects at all. I totally agree with Dan (as does my gi) that it's very safe, works for MANY people, and make a lot of sense as a first line medicine. I can't see any reason not to try it.
 
I don't agree with the using the term 'remission'.. but that could be just my own take on the semantics. I have been using LDN to controll my crohns for 2 years now. It has made a remarkable difference in my life, it allows me to live a fairly normal life, taken in conjunction with 5-ASA, a crohns sensible diet, a regimen of vitamins, supplements and probiotics, and plenty of rest.

Here's the thing... I don't know what would happen if I stopped taking it, (and I'm not about to find out), and I have had some significant flares in the past 2 years.. a major one with adverse affects lasting several months AFTER I tried to stop smoking, and several minor ones lasting a few days or more after developing a cold or flu. So, to me, its not so much a remission as it is a form of symptom control. I tend to compare LDN for crohns as on a par with insulin for diabetes. Its a bit of a stretch, but I think it is valid.

I agree wholeheartedly with every reason given as to why it should be the first course of treatment, but there are a couple of pitfalls everyone should know if they are considering it. First, because it is so avant garde, it could jeopardize your relationship with the established medical community. They might see you as a hi risk quack who would try 'anything' except their long standing standard treatments. It takes a special breed of doctor to offer to prescribe it. Finding someone like that can be a real challenge. There are some people on here who gone to great lengths to battle this beast.
The other downside is that you can't mix and match LDN with other typical treatments. That means that in going LDN, and strictly just LDN, there is a risk you will actually get worse before it kicks in.. and it might not kick in at all. So, before you ante up, better be sure you are in a physical position to take such a gamble. LDN works slowly, and that can be a real problem, OK?

Final thought... Don't muddy up the water in your thinking pan. There are so many other diseases that respond well to LDN.. MS, MD, crohns, & ALS.
But if talking about crohns, then ignore the other studies or stories on all the other diseases it helps. Stick to just the info on the issue at hand, OK
 
Just so you get an accurate picture... I tried it for about 5 or 6 months and it didnt work for me. I did not alter my diet any though. No bad side effects though!
 
Here's my post from another thread about it:

"Hey, I was on it for all of last summer, I think it did do some things for me... but I also think I was too far into a flare for it to totally fix me. I think all it did was keep my flare at bay for a couple months, but then it got worse and I had to go back on Remicade.

Colt is correct in saying that you can't use any pain killers while on LDN. Also, it has to be taken before bed at generally the same time everynight. If you take it and then stay awake, you'll start to feel VERY weird (like paranoid, like creepy crawlies are all over you, and just like something bad is about to happen)

It does give you some pretty vivid dreams (not nightmares for me, just vivid) and it made me sleep very hard. You also have to make sure you can find a compounding pharmacy to make it for you (places like CVS, Walmart, and Walgreens aren't going to be able to do it)

The other thing I noticed is that it cleared up a reoccuring infection I had called candidis (yeast) on my ear lobes. I think one other thing worth mentioning is when I had to miss a couple doses due to a pharmacy mixup, I was VERY depressed and went through withdrawal symptoms for those 3 days"
 

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