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Naltrexone experiment - failed!

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Posted 11/20/2007 1:45 AM (GMT 0)
Hi everyone,

I've mentioned a few times that I was doing low-dose naltrexone as an experiment, and I promised that after two months I'd report back results. Well, it's been two months, and I'm afraid I'd have to grade it a "D" at best. However, not everyone else will have this result, so let me explain.

I actually DID fell better soon after starting the naltrexone, though I wasn't that bad to begin with. Anyway, the really big problem for me was insomnia. I'm naturally an insomniac anyway, and marital stress along with my Crohn's has contributed to that problem. But after starting naltrexone, the problem grew notably worse. I started taking sleeping pills, and that helped, but it seemed that without pills I really couldn't sleep. And of course, you can't take sleeping pills every night forever, because they are habit forming and become less effective over time.

So I quit the naltrexone a few days ago, and already my sleep is much improved.

So what to do about my Crohn's? Well, like I said, I wasn't that bad when I started naltrexone, though I have been deathly ill in the past (and have had three resections). Right now, I'm doing some supplements which help: vitamin
A (fish oil type), probiotics, and MSM. Just today I restarted sulfasalazine (I'd prefer mesalamine, but it's too expensive).

I do not feel badly, but I really was hoping for a miracle with naltrexone. Sad to say, that miracle didn't work out for me. However, I don't want to discourage others from trying it. Others on this forum have claimed some success with naltrexone, so there may be value in it. Were it not for insomnia, I'd probably still be taking it.

I'd appreciate any comments from others who have gone the LDN route.

best regards,
Robert
Posted 11/20/2007 2:09 AM (GMT 0)
That's too bad it didn't work. I also didn't respond to it (as with every other supplement or drug I've tried). It made me lose my appetite too.
Posted 11/20/2007 9:27 AM (GMT 0)

I'm sorry that it didn't work out but at least you tried it....  that's all that we can do....

<virtual hug>

Glad that you are able to get some zzzzzzzzzzzz's

Posted 11/20/2007 1:38 PM (GMT 0)

Reef08 said...
That's too bad it didn't work. I also didn't respond to it (as with every other supplement or drug I've tried). It made me lose my appetite too.

Hi Reef08,

Have you tried the 3 supplements I mentioned above (vitamin
A (fish oil type), probiotics, and MSM)? I really AM getting good results from that - much reduced diarrhea. Also helpful was to quit caffeine (coffee, tea, cola), though that's very hard (I just love coffee).

As I said, I'm not feeling too badly these days, which surprises me considering I nearly died 2 years ago after an emergency resection (my third). But who knows - could be dead tomorrow. I no longer make long-term plans.

best regards,
Robert
Posted 11/20/2007 11:17 PM (GMT 0)
Thanks for the feedback. I just found out the other day that LDN did not help somebody I know...I'm going to ask him to post his experience on this site because those of us who need to decide whether to try it, or not, need to have as much info as possible about successes and failures.
Posted 11/21/2007 1:32 AM (GMT 0)
I'm currently in the LDN clinical trial at Penn State.  I had a colonoscopy LAST week and will have another one after 3 months on the placebo/LDN and then ANOTHER after 6 months (the first three months are placebo or LDN, the second three months, all patients are on LDN).  I'll definitely let you know the results.  As of right now, my small intestine is severely ulcerated and inflamed.  I have a fistula and lots of othe medical things going on.  After my next colonoscopy, I'll post a comparison.  FYI, I firmly believe I am on the LDN, as my sleeping has been horrific.  As others have mentioned, I was already an insomniac, but now the problem is not GETTING to sleep, it's STAYING asleep.  I have determined that if I take it closer to 11 (rather than 9) I do sleep better.

Claudia

Post Edited (Smrtgrl96x) : 11/22/2007 10:46:36 AM (GMT-7)

Posted 11/21/2007 6:30 AM (GMT 0)
Claudia, thanks. Looking forward to your updates!

Posted 11/21/2007 12:41 PM (GMT 0)
Hi Robert Glad your not doing too bad. At least you gave it a try and I know it can be disappionting when the meds don't work like we hoped they would. lol gail
Posted 11/21/2007 12:53 PM (GMT 0)
Hi Robert! Thanks for the info. Sorry it wasn't successful.....

I just have a quick question: What is MSM?

Thanks to Claudia, too! We will look forward to your posts!
Posted 11/21/2007 2:56 PM (GMT 0)
I have not been on LDN, but a couple of quick comments: First, from time to time a "new" therapy shows up here and on other Crohn's forums and bulletin boards, and there are always a few who tout it as the coming thing. In most cases that just doesn't pan out after clinical trials. I remember when Remicade came along in the 90s and my GI was briefly excited, but soon realixed that it is fine for a subset of patients, but not for all, and not forever. I don't know where LDN will end up, but the early reports are not that encouraging, as this thread demonstrates. The hard fact is that this is a chronic, incurable disease and there is not likely to be a "magic bullet" that will help all or even a majority of patients. The second observation is re the use of the term "miracle." Maybe I'm a pessimist and maybe I'm a realist, but I just don't expect a "miracle" for any disease that has its roots in the complex and inscrutable human immune system. The truth is that it makes more sense for each individual Crohn's (or UC or arthritis or MS, etc.) patient to find a good specialist, try all the recognized therapies, try to live a healthy life and accept the fact that that life is going to be impacted in some negative way by what ails you . . . and refuse to allow that to defeat you. As bad as this can be for some people, there are worse things out there. I worry that some patients spend too much time running after "miracles" when they might better spend time getting on with the lives they have.

Posted 11/21/2007 3:16 PM (GMT 0)
ozonehole,

I take fish oil and probiotics everyday. I haven't tried MSM. I've tried the following supplements/meds:

-Been on Entocort and Flagyl for 4.5 years now
-LDN
-cipro (allergic reaction)
-turmeric
-glutamine
-cats claw
-wormwood
-wellbutrin (they were using it in clinical trials for Crohn's)
-naturopath (helped a little, but too expensive)
-homeopothy
-chiropractor

and I'm sure I'm forgetting more.

Posted 11/21/2007 7:23 PM (GMT 0)

MikeB, well said. I agree with so much of what you said, including the part about no miracles, finding a specialist, and living a healthy life. However, "recognized" therapies don't work for everybody, are not necessarily safe, and have been insufficiently studied in terms of their effects on general health: impact on vitamin D and iron, etc. I fully support people willing to try LDN before jumping to a more toxic med like azathioprine.  

this just in from Frazier, who mentions disappointing results from LDN. However, he also notes that recognized therapy hasn't worked, either:   

"Could you post something on my behalf saying LDN worked for
about 3-4 weeks and then didn't work for the 2-3 months after that?
Thanks.

Also tell them that my case hasn't responded to Humira
twice...so....keep that in mind."

Posted 11/21/2007 10:23 PM (GMT 0)
Hello

Ozonehole, I'm sorry that the LDN didn't help you. I have heard that you need to give it a good chunk of time, but if the sleep disturbances were that bad I don't blame you for stopping. I've been on LDN for two months now and have no idea if it's helping with my Crohn's or not. But then, my symptoms are mild (I was surprised to learn I had Crohn's) and mostly arthritic type sensations. I do have proctitis, though, so it will be interesting to see if it helps with this. But even my symptoms for that are currently very low - no bleeding, very little discomfort if any with b/m's.

The sleep differences on LDN have been minimal for me. I remember my dreams much more vividly and it seems like they are more lucid and realistic than they usually are. Like, the stuff that happens could actually happen in real life. It seems like I dream more, but it could just be that I remember them more. No problem really with insomnia for me. If anything I sleep longer.

I now have a steady level of energy during the day whereas I used to be very, very tired.

It seems everybody has a different reaction in the sleep department, which tends to be the only common reaction to LDN.

I'll keep you posted on my progress. Claudia's experience will be much more meaningful, probably, as she is being clinically evaluated via colonoscopy - what a trooper! : )

Jamie
Posted 11/22/2007 2:52 AM (GMT 0)

EMom said...
Hi Robert! Thanks for the info. Sorry it wasn't successful.....

I just have a quick question: What is MSM?

MSM = Methylsulfonylmethane

OK, that tongue-twister name doesn't explain anything. Wikipedia has a page:

http://en.wikipedia.org/wiki/Methylsulfonylmethane

It's an inexpensive supplement that can be bought over the counter in most pharmacies.

Before trying it, you might first want to try vitamin A (from fish oil, not beta-carotene) and a probiotic. Then later, perhaps try MSM to see if that gives you any further improvement. I started taking the MSM for arthritis, but it MAYBE has helped my Crohn's too, as both arthritis and Crohn's are inflammatory diseases.

A note about the vitamin A - do not exceed more than one capsule per day. Overdosing on vitamin A has health consequences - one capsule daily will be enough. Give it a week or two to work. It has definitely helped me - my diarrhea is practically gone.

best regards,
Robert
Posted 11/22/2007 5:54 PM (GMT 0)
Mike,

I understand your frustration with the idea of some miracle, magic drugs. We all get frustrated with our disease. Mine is severe and I do have high hopes for LDN. Some people just don't respond to certain medications. As Zoey said, my results will be clinical and either my colonoscopy will show improvement, decline or the same. As far as results thus far with LDN, I wanted to share some information because I think saying "The early results are not that enouraging" may not be accurate...

"Dr. Jill Smith’s original article, "Low-Dose Naltrexone Therapy Improves Active Crohn’s Disease," was published in the Jan 11, 2007 online edition of the American Journal of Gastroenterology (2007;102:1–9) [print edition Apr '07]. This was the first clinical study of LDN published by a US medical journal. Dr. Smith, Professor of Gastroenterology at Pennsylvania State University's College of Medicine, found that two-thirds of the patients in her pilot study went into remission and fully 89% of the group responded to LDN treatment to some degree. She concluded that “LDN therapy appears effective and safe in subjects with active Crohn’s disease.” That open-label Penn State trial demonstrated the efficacy of LDN in a small group of patients.

As a result, Dr. Smith received an NIH grant that permitted a more definitive Phase II placebo-controlled clinical trial, which by October 2007 had already studied about one-half of the 40 patients it plans to include. With many patients yet to be added to the study, Dr. Smith remains very optimistic about the usefulness of LDN in inflammatory diseases of the bowel, such as Crohn’s disease. (See the trial website.)"

Dr. Smith is my gastro and she has paid more attention that any doctor I have EVER seen. I am the 23rd patient in the study. I know a lot of Crohn's patients don't want to partake in using LDN because their narcotics will no longer work. I understand how scary that can be, but I didn't use narcotic pain meds often and can't use them at all now.

I realize that my colonoscopies could reveal that it doesn't help at all, but for the sake of other Crohn's patients, I'm willing to have these 3 done over 7 months in the hopes that LDN will help a large portion of the Crohn's population. Maybe it's not THE miracle drug...but it could be my miracle drug.
Claudia
Posted 11/22/2007 8:07 PM (GMT 0)
You have to remember the trial for LDN was unblinded and used a much smaller number of patients.  Many trials start out like this and seem like  a sure thing but the results don't carry over once you get to a phase 3 trial (Leukine comes to mind here).  I'm not saying it doesn't work, it's just that the response rate will be nothing close to 87% in a larger, double-blind trial.

Posted 11/22/2007 9:34 PM (GMT 0)
Reef, thanks for pointing out the smaller number of people used in the Phase 1 study. It inspired me to look up the differences in clinical trial phases. The amazing thing to me about LDN is that it is being study to treat such a wide range of ailments (HIV/AIDS, MS, Autism, Cancer, etc.) I'll be very interested to see what the response rate ends up being in this Phase II trial!
Claudia
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