To all chronies...Why have you not tried LDN ( Low dose Naltrexone)?

There are some people on here who have had very neg experiences on LDN. Like darn near losing their sight. The successful treatments seem to be on the ones who have mild crohns.

Hi Redspot,

You said it yourself -- there aren't conclusive studies yet. Trials are still ongoing. Some effect for CD appears to result but, when you conduct a study you analyze all possible factors that could have contributed to the observed effects. They haven't done that yet for LDN. You have to look at all the information and decide if there is enough to draw a conclusion. You might consider volunteering for the trial LDN.

It is just like the hookworm trials. (See the earlier posts.) I read lots of antidotial (spelling??) reports, but no one I've heard from has been on them for more than 6 months. But if I read only the reports from hookworm supporters, I might conclude it is a miracle cure! There does appear to be something interesting going on -- having a low dose of hookworm appears to reduce CD, allergy, and asthma symptoms. I am reading a number of preliminary journal articles that discuss theory, but only a short range-finding study has been completed. Range-finding studies are only designed to see what doses would be used in the full study -- they don't really evaluate effects. The full trial is ongoing. I'm waiting for the results of the trial.

I haven't tried it mainly because my doctor hasn't seemed interested or accepting. Now I am going to openly ask a differect doc (my old one) about his opinion and if he will write a prescription. At least, assuming Tysabri doesn't start working miracles soon!

There was only one clinical study with 17 people. Not enough evidence. You can get misleading results with such a small sample size, and that's not enough people to determine the side-effects.

Additionally there is no info regarding pregnancy. If I have to take drugs, I'll stick with what is generally consered safe. Not that I'm currently trying... but accidents do happen.

I have read that LDN has only been successful for people with mild Crohn's, too...


Also, MMMNavy has been a member on this board longer than you have... So, it's possible she's heard of a few others who have tried LDN and have had problems with it... *Shrugs*

Redspot, this was a good post. I realize that trials are not finished, but at the same time I hear more anecdotal success stories compared to some approved meds like Pentasa and Asacol, or even the immunomodulators.

From my perspective, there is nothing to loose. It's safe and cheap. That's why I will be trying it. I'm not going to amp myself up and expect a miracle but I want to try every possible option until there are no more left. I have no alternatives besides Tysabri, maybe hookworm, and possibly stem cells in the form of a clinical trial. LDN is the least invasive of the bunch. I won't sit around saying," I'll just stay sick while I wait for the official trial results to be published in the New England Journal of Medicine next August." I'm not suggesting others follow my logic if they have not exhausted other proven techniques.

And Redspot are you taking anything besides LDN right now?

Jo, I don't think we'd be allowed to take it. As far as I know it hasn't gone through a trial here so wouldn't have been approved by the TGA, let alone for the PBS.

I could be wrong, though. Will you tell us what your gastro says?

I.

PS. See my other note to you in the Snohare thread. Lovely to see you again!

Sorry ya'll I am still in the hospital so I am doing this on my treo. Between here and the MS board there has been several discussions about LDN. I looked into it as well, but since I could not keep pills down so it was not an option for me. There has been a couple with optic nephesis (SP?) and other eye severe complications over the years. But is it anymore then our diseases could do on it is own? Unknown... Disease Process??? I am all for doing whatever it takes to get you well. If LDN works for you then great!

My 2 cents...I visited my dr last week, and she agreed to let me try the ldn. I've sent the prescription to the pharmacy and should have it within a couple of days. What made me decide to take it? Well, the last drug (long-term) that I was on for my Crohn's was remicade. It worked very well for me for a long time, but my doctor and I believe that the effectiveness wore off over time. I had a bowel resection 5 weeks ago, and need something to stay in what I feel is semi-remission (sed rate is elevated, etc.). My doc wanted me to go on Humira, and had also mentioned the possibility of tysabri prior to my surgery. I did a lot of research on ldn before and after surgery (lots of free time on my hands), and felt that it is worth my while to try it. The side effects (comparing it to humira and tysabri) seem minimal, and it is MUCH less expensive than humira. We'll see how it goes for me...

I tried LDN for a year. At first, it seemed to work; I felt a little better. THe first few nights felt like a serious drug trip, and I had many horrrible nightmares the first month. But after a few weeks, I started to flare worse than before. I started with the lactose pills, and though they were teeny, I guess I had a reaction to them. So I switched to cellulose, and started getting better for a month. I was on sulfasalazine at the time, and had been (on and off) for 20 years. After a few months on LDN, I started having really weird symptoms; my hands went numb (nueropathy) and I started feeling really weird, like I was out of my body. The pharmacist who dispenses LDN (Skip) suggested perhaps the LDN had started modulating my immune system, and an allergy to sulfasalazine was manifesting. My local doctor said people can just suddenly develop an allergy to this med. So I came off of it.

And then flared worse than I have in a decade, though it was probably due to a yogurt starter switch combined with stopping the sulfasalazine. (I was on SCD.) The LDN did nothing to quel the flare, and I ended up in the hospital after a colonoscopy which revealed "moderately severe" inflammation.

I came off LDN to go on Prednisone (you're not supposed to take it with immunosuppressives) and finally came off the Pred and went back on LDN. I started Humira one month later and stayed on LDN (which might have been a big mistake) and after 2 months on Humira, my CRP went from 5 to 19.10! My GI thought I had an allergic reaction to Humira, but doesn't know for sure, since I tolerated Remicade 5 years ago no problem.

I finally gave up on LDN after a year of trying and the worst year I've had in a decade.

In December, I tried hookworm through www.autoimmunetherapies.com and I am currently in month 5.5. My CRP before hookworm was back down to 5.4; after 4.5 months, it is 0.9. I am off SCD and eating things I was afraid of before, but my bowel movements still could use some improvement. But I also gained 17 pounds during the last few months, so something good is happening.

I was interviewed by the Bay Area chapter of CCFA for their July publication of "Rumblings'. My doctor is going to provide a short article on the science of it. There's currently a trial still open in Nottingham for hookworm and Crohn's, and the results will be interesting. (Probably not out until 2009 or 2010.) There is something very exciting about this, and according to Nottingham, especially in the field of allergies, there is great interest. So I think we'll be reading more about helminths in the future.

I'm working on a detailed website describing my experience, and I plan to get blood tests every few months and report in as the months go by. You are right that no one knows if long term, it can keep the immune system in check. So far so good though. I'll post the site once I have it up, and those interested in trying hookworm, but waiting to see how another person fairs, can check in there often.

I agree that LDN is probably safe to try, but I am suspicious of my "drug allergies" that suddenly manifested while on LDN. I have to say, that even going through the inflammatory period of hookworm (you respond allergenically for the first 6 or so weeks, until the hookworm reach maturity and start modulating the immune system), I much prefer this natural method, of something that is alive and will continue to work rather than a chemical drug agent that the body often forms an allergy to, or overcomes.

Anyway, just had to respond to this thread since I gave LDN such a long go. And almost 6 months so far on hookworm. I want more people to try it (hookworm) to see if we all have similar experiences. Both remedies are far safer than Tysrabi, Remicade, or Humira, though. I am curious why more people don't try them as well, but I guess with the hookworm, there is expense, travel, and not knowing if long term it will stay working, so I understand the reluctance.

But I'm not a fan of LDN...

belleenstein said...
EMOM said: "I completely understand wanting to be cautious, but are you saying LDN is an opioid like LSD?"

LSD is not an opiod.

Sorry, that is simply what I inferred from GladBag's post. As I said, it's possible I misunderstood. I see Heroine is an opioid...must be confusing the two.

I asked my gastro about it and he said he's not convinced it helps crohn's and he won't prescribe it. I'm seeing another specialist soon and I'll ask them too. I'm also pregnant and feeling so desperate about being sick with this DD... :-(