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Low Dose Naltrexone helps autoimmune/chrons/uc and numerous other disease

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Ulcerative Colitis
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Posted 1/14/2009 3:05 PM (GMT 0)
http://articles.mercola.com/sites/articles/archive/2009/01/06/can-ldn-really-help-multiple-sclerosis-rheumatoid-arthritis-and-other-autoimmune-diseases.aspx

has anyone looked into this yet? It's was a med that came out 20 years ago for those addicted to drugs and alcohol and now it's being uses, in low doses, for UC and Chrons. They said doctors are not hearing about it b/c it only costs $15-$40 a month in presciption so the drug reps aren't pushing it. It's designed to make your immune system normal. Please take a listen or read. How do you get a GI or MD to read this info? Gosh my doctors are so frustrating b/c they "know what's best".

Posted 1/14/2009 3:08 PM (GMT 0)
Someone posted about this yesterday. It sounds promising but from what people are saying, most GI's won't even consider it. It hasn't been tested for UC, only Crohn's. I have an appt. next month and I plan to ask about it.
Posted 1/14/2009 3:10 PM (GMT 0)
Thank You, I missed the board yesterday. I'm going to print it out and have my GI read.

Posted 1/14/2009 3:15 PM (GMT 0)
Let us know what they say!
Posted 1/14/2009 3:16 PM (GMT 0)
Ok and I just posted on Dr. Mercolas site to see if anyone knows of a doctor near Michigan that believes in this therapy, or least a doctor that is open to listening and reading this article.

Posted 1/14/2009 5:12 PM (GMT 0)
There is much more information about LDN at this site

http://www.lowdosenaltrexone.org/

You can also sign up for the yahoo group which has over five thousand members and ask whatever questions you may have including prescribing doctors in your area.

There are many people on the ldnyahoo group that are on it for crohn's or colitis. I have been on LDN for about two months and have seen a major improvement in the past few weeks.

LDN, just like any other drug, does not always work for everyone.

about two-thirds of the people in the first crohn's study at Penn State Hershey went into total remission.

Miss

Posted 1/14/2009 5:16 PM (GMT 0)

Hi Miss,

I'm trying to get on that website forum, I'm waiting to get accepted or approved. Can you try to find me a doc in Michigan and you can email personally at if you feel more comfortable. I really want to try it. How did you get your doc to try it for you?

Thank You for helping.

Linda

Linda, I removed your email address to protect your privacy.

Anyonw wanting to mail Linda, please click on the blue envelope on the left side of the page by her name.

Post Edited By Moderator (Judilyn) : 1/15/2009 11:37:28 PM (GMT-7)

Posted 1/14/2009 6:09 PM (GMT 0)
I love reading about possible new treatments.
I will keep an eye on this. Keep us posted :)
Posted 1/14/2009 6:46 PM (GMT 0)
Linda, I'm in MI too...I'd love to hear what you find out!!
Posted 1/14/2009 9:04 PM (GMT 0)
I'd be keen to try LDN but it apparently requires that the effects of any immune-suppressing drugs must be removed first- meaning no Remicade, Imuran or even prednisone. So most of us "desperate" enough to be looking into stuff like LDN (not that it has any toxicity whatsoever, as far as I can tell) would have to risk flaring much much worse for a long time to even try it. Thus it's a non-starter for me, since Remi is probably my last stop now before surgery. If I was not on any immune-supp drug, I'd try LDN in a heartbeat.
Posted 1/14/2009 9:52 PM (GMT 0)
Has anyone actually tried LDN for their Colitis and had positive results.

I think we've been here before with other miracle medications like the Adacolumn and Refaximin and both in my case anyway were damp squids.

G
Posted 1/14/2009 10:53 PM (GMT 0)
I wonder how long you have to be off of immune suppressing drugs before trying LDN. One of my GIs said that he hasn't had luck with LDN but I'd still be willing to give it a shot if possible.
Posted 1/15/2009 1:19 AM (GMT 0)
Naltrexone has been FDA approved and been around much longer than most meds that people take for crohn's/colitis. It's just used in a lower dose for immune disorders. If I was pocketing five grand or so every time someone sat in a chair at my office and had remicade run into them I think I'd probably be reluctant to prescribe something that runs about twenty bucks a month too.

I started at 1.5 mgs LDN about three weeks after my last remicade infusion. I was having some issues at the time but nothing I would consider a bad flare. D about three or four times a day with blood daily but I'm a bleeder, that's my major issue.

 Anyway, was at 1.5 for a week then went to 3.0 for a few days then right up to full dose of 4.5 mgs. I think with the remicade in my system and the ldn at first they were working against one another for about a month but this past month has honestly been the best I've had in a quite a while. I was really bad and just in the hospital early fall, almost perforated colon. I was having some pretty bad sides from the remi and had already decided not to get anymore infusions before I even started the LDN. There are quite a few people on the crohn's board that have had success with LDN and also on another forum at

http://www.crohnsforum.com/

I wish I would have looked into this before going to the so-called specialists I had to deal with. I think this would have saved me a twelve day stay in the hospital had I found out about it sooner. When I was in the hospital my sister-in-law cut out a local article about the next study starting at Penn State Hershey. I called about it but was afraid I'd end up with the placebo so just got a script for the real deal.  So far, I'm glad I did.

Miss

Posted 1/15/2009 6:40 AM (GMT 0)
I'd like to ask my doctor about this as well before trying the Remicaid (big stuff). But no immunesuppressants? I am tapering my prednisone now so maybe.... I'm sure my doctor with say no but maybe I will fax him an article what the heck all he can say is no.
Posted 1/15/2009 12:51 PM (GMT 0)
I would not recommend sending or showing your GI just any info on LDN. I would highly recommend you do your homework at this site first if you really are interested in trying it.

http://www.lowdosenaltrexone.org/index.htm

I would also print out the article here on the trial done at Penn State Hershey. This article points out that eighty-nine percent responded to LDN and sixty-seven percent achieved remission. I'm not sure how other meds fair but I think that sounds pretty high considerring all the posts from people that failed this or that treatment. The second trial is going on now at PSH.

http://www.ncbi.nlm.nih.gov/pubmed/17222320

Miss

 

Posted 1/15/2009 1:04 PM (GMT 0)
Thank you Miss3 I have been looking for something informative to fax my GI today! :)
Posted 1/16/2009 5:19 AM (GMT 0)
So I faxed over the information to my doctor today. I have not heard back. I really want to try this med. Can anyone explain why we have to be off of immuno suppressives while taking this drug? I am only asking because I am weening my prednisone and want to get an idea of how long I have to wait to take it.
Posted 1/16/2009 5:29 AM (GMT 0)
Have you tried looking up the info on the LDN website? Another good resource is the yahoo group. I don't know why you have to be off immuno-suppressants, but one possible reason could be that when you are taking too many different meds, it is hard to tell which is helping, but I'd guess that isn't the primary reason to off them. Hopefully someone will know the answer. Do you know that your doc will prescribe the LDN? Mine was hesitant until he was able to do some research since LDN was a new one to him. I'm still waiting on him...
Posted 1/16/2009 7:19 AM (GMT 0)
I have absolutely no idea whether on not my GI will prescribe this med for me or not? I am just praying that he will. I hope to hear from him soon on this.
Posted 1/16/2009 8:15 AM (GMT 0)
If you haven't yet joined the LDN yahoo group, I'd suggest you do. That way, if your regular doc won't prescribe it, you can post with the group and someone will contact you with some info. When you do finally get a scrip, be sure to use one of the recommended pharmacies from the LDN web site. Apparently LDN has to be specially prepared and since it is an uncommon drug, many places don't do the preparation right. Good luck.
Posted 1/16/2009 2:19 PM (GMT 0)

Naltexone is not an uncommon drug, it's been FDA approved since the eighties. The standard dosage for naltrexone is 50 mgs. In order to get it at the recommended 4.5 for autoimmune disorders it must be orderred from a compounding pharmacy. I recommend Skip's compounding pharmacy in FL, that's where I get mine. Their info is at the naltrexone website listed above. They really know what they are doing and Skip actually posts to the ldn yahoo group occasionally. My script from them comes to around seventy bucks with shipping for a little over three months supply. My co-pay for asacol was something like fifty bucks a month and I stopped taking it just after having the last script filled since it only seemed to make me worse.

LDN cannot be taken with immunosuppressants because they will work against one another. LDN doesn't technically 'boost' the immune system but helps regulate it. You take it at night and it blocks the opiate receptors in the brain so your body produces more endorphins in the middle of the night. If you are taking high doses of pred at the same time neither will really do any good for you.

I was on 20mgs of pred at one point just after starting the LDN. I was still losing a good bit of blood at that point and had D. I was told by Skip that this is fine for short term. So once you get to 20mgs and taperring something like 5mgs per week of the pred it should be fine to start LDN but ask your physician anyway to be sure that's what they recommend for your individual case.

Miss

Posted 1/16/2009 2:57 PM (GMT 0)

I found a Michigan doctor NP and MD both who is willing to try it, I always have a consult with another doc out of state, I don't think it hurts to get two opinions. Miss has been very helpful and thank you Miss for passing along this information. I sent this info to my GI who hasn't responded, when I saw her last she said if I didn't want to take the asacal and the other 5ASA she'd have to pull out the "big guns" and I said prednisone and she said NO immunosurpressants, that scared me to death. It will be interesting to hear her response to the med that ramps up the immune system when she thinks surpressing is the best thing. I will keep you posted.

Posted 1/17/2009 12:17 AM (GMT 0)
Where are you at in MI? Have you talked to the NP or MD that is willing to try it?
Posted 1/17/2009 7:35 AM (GMT 0)
I found this neat website during my researching. It has prescribing doctors and pharmacies just in case our GIs say no and we want to do it anyway.

http://www.ldners.org/resources.htm
Posted 1/19/2009 3:25 PM (GMT 0)
I live near West Branch and I have found a MD out of Flint who's also a NP that is willing to consider it, they told me that over the phone. I also, have a consult with a doctor who prescribes this medication for those with UC and Chrons and I'm talking with him on Thursday. So either way, I will be on this medication it's a matter of this week or next. I'm currently on no meds. I'm very hopeful!

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