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

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redspot321
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Date Joined Jan 2006
Total Posts : 303
   Posted 5/19/2008 6:06 PM (GMT -7)   
Im just curious as to why people are not trying LDn. Ive heard all these positive things about the drug but nothing negitive. I would like to be educated on the down side of LDN since I am taking the drug. Theres not a whole lot of scientific evidence out there, do you have negitive experiences with LDN?

MMMNAVY
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Date Joined Jul 2006
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   Posted 5/19/2008 6:13 PM (GMT -7)   
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.
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
All suggestions/options/opinions are caveated with please consult with your local health care provider...


redspot321
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Date Joined Jan 2006
Total Posts : 303
   Posted 5/19/2008 6:17 PM (GMT -7)   
MMMNAVY said...
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.

Really... These are the things I want to hear. I would like to do as much research as I can. Maybe these folks will chime in.
 
I wonder what the mechinism is that would cause something like that.

FallColors
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Date Joined May 2007
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   Posted 5/19/2008 7:00 PM (GMT -7)   
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.

Kenny23
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Date Joined Aug 2005
Total Posts : 128
   Posted 5/19/2008 7:51 PM (GMT -7)   
I don't understand what the negative side effects can really be. This is an old drug that is safe in high dosages let alone taking less than 1/10th the normal amount. If there are any side effects they can't be worse than Humira, Remicade, prednisone..

My guess is that most patients listen to their doctors who are not yet writing scripts for this drug. I don't totally blame them since no large population study results are out. Plus you have to go to a special compounding pharmacy which most people probably don't know where one is.

One thing too that I have a problem with is that I am unsure what other meds I can take at the same time. I'm on Humira and am not sure if LDN could even work with that drug. It's the lack of information and the personal responsibility of looking into this drug that makes it difficult.

sr5599
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Date Joined Aug 2007
Total Posts : 1202
   Posted 5/20/2008 9:44 AM (GMT -7)   
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!
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--stuck on methylprednisolone, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-year-old girl


ozonehole
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Date Joined Dec 2006
Total Posts : 559
   Posted 5/20/2008 12:05 PM (GMT -7)   
I tried LDN for 3 months. Basically, it had no effect on me. I have nothing good or bad to say about it, other than that it didn't work and I finally gave it up. I'm hoping that it works for others.

regards,
Robert
Crohn's since 1988
3 resections


Illini
Regular Member


Date Joined Dec 2007
Total Posts : 298
   Posted 5/20/2008 12:17 PM (GMT -7)   
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.


July 2007 Drug-Induced Liver Injury
January 2008 Crohn's Ileitis
Currently trying...
Enteral Nutrition, Omega-3 (Flax Oil and Fish Oil), VSL#3, Vitamin E, Folic Acid, Psyllium


EMom
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Date Joined Aug 2007
Total Posts : 990
   Posted 5/20/2008 3:02 PM (GMT -7)   
MMMNAVY said...
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.


I am curious. Was there anyone other than Dave D who thought their sight might have been affected? He is the only one I recall, and he (and his doctor) rescinded his theory in a subsequent post. Here is the thread where the discussion took place:

http://www.healingwell.com/community/default.aspx?f=17&m=1086289&p=1

Be sure to read the entire thread to catch the whole discussion.
EMom
Mother to 16 year old boy diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, calcium w/D3 and a good multivitamin.
Started The Maker's Diet in early September. Gradually learning/using more SCD recipes, too! (cooking challenged)


Celey
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Date Joined May 2007
Total Posts : 1284
   Posted 5/20/2008 3:53 PM (GMT -7)   
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*
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


redspot321
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Date Joined Jan 2006
Total Posts : 303
   Posted 5/20/2008 6:34 PM (GMT -7)   
MMMNAVY said...
 The successful treatments seem to be on the ones who have mild crohns.

Well I know its way too early to tell if LDN is going to work for me in the long run, but after 4 days on the drug I feel 85% better. My pain in the RLQ went away the following day and has not returned yet....... Im down to 1 stool a day.
 
I dont know if I would consider myself "severe crohns" either. Diagnosed 2005, 63cm resection feb 08, steroid dependant 11 weeks later awaitig remicade infusion. Ive exausted every med except for the IV, IM stuff..... I work in healthcare so I dont want to knock out my immune system. Thats why I gave LDN a try.

Kenny23
Regular Member


Date Joined Aug 2005
Total Posts : 128
   Posted 5/20/2008 7:35 PM (GMT -7)   
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?

SydneyJo
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Date Joined Mar 2006
Total Posts : 1354
   Posted 5/20/2008 7:59 PM (GMT -7)   
There is a thread on the UC forum at the moment about LDN that I found had interesting arguments/comments.
I am seeing Gastro early June and will be mentioning LDN to her.
Thanks for this post Redspot
Take care
Jo

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/20/2008 10:19 PM (GMT -7)   
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!
Co-Moderator Crohn's Forum.


Dave D
Regular Member


Date Joined Aug 2005
Total Posts : 404
   Posted 5/21/2008 5:46 AM (GMT -7)   
Outside of the eyesight discussion that has already taken place. My only other complaints (other than after 3 months it didn't work were as follows:
Insomnia. Sometimes it was impossible to get to sleep. When sleep occurred, I had very vivid dreams.
Pain relief: Before, whenever I had the Crohns pain (LRQ), I could just take a Vicadin and go to bed. When on LDN, most pain killers don't work, so no remedy for pain, just sweat it out.
I think my eye issues were from coming off Entocort, and not necessarily from the LDN other tha it was the reason I came off the Entocort.
Dave D
Retired male in late 60's. Perforated Colon in 92. Diagnosed as Ulcerative Colitis in 93. Uncontrolled flareup in 97 dictated J-pouch surgery. 04 Capsule endoscopy diagnosed as Crohns not UC. Emergency surgery in 05 to remove lodged camera capsule. Biopsies positively diagnosed Crohns at that time. 12/06 Unsucessfully tried Naltrexone(LDN). 2/07 developed scleritis of the eye, tearing and detaching the retina. Treated with high doses of Prednisone. 6/07 Thought eye was healing and started taking Entocort counting on the residual (non-systemic portion) as treating the eye. Wrong. In October eye was not stabilized. 11/07 Started Remicade to try and reduce the ocular inflamation of the Scleritis since I had been requiring more and more Prednisone to keep the eye quiet. 12/07, retina tares and detaches again. Started Remicade every 4 weeks plus 20mg of Prednisone per day. Six months and seven infusions later, good eye is back to 20/14. Bad eye is 20/70. Set for cataract surgery in June 08 on bad eye. Should return to a correcable visionary level. Life looks good (literally) today.
Married with 4 grandkids.


MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 5/21/2008 6:28 AM (GMT -7)   
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!
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
All suggestions/options/opinions are caveated with please consult with your local health care provider...

Post Edited (MMMNAVY) : 5/21/2008 11:52:20 AM (GMT-6)


Glad Bag
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   Posted 5/21/2008 12:36 PM (GMT -7)   
just because the dosage is low compared to other drugs, doesn't mean there is any less risk of side effects....

for an extreme example, think of LSD, the amount it takes to potentially screw someone up for life, is less than you can see with the naked eye....measured in Micrograms... (millionth of a gram, 1/1000th of a milligram)

drugs can be powerful things...so, i am waiting for the longer term studies....seems to me, like any opioid, the patient would become tolerant to the med anyway, over time, and the potential benefits would eventually stop...

that's just my thinking. go figure?
"I am he as you are he as you are me and we are all together!" - The Beatles

doesn't that just sound cool when you sing it?


lucey
New Member


Date Joined Apr 2008
Total Posts : 6
   Posted 5/21/2008 6:02 PM (GMT -7)   
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...

EMom
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Date Joined Aug 2007
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   Posted 5/22/2008 5:33 AM (GMT -7)   
Glad Bag said...
drugs can be powerful things...so, i am waiting for the longer term studies....seems to me, like any opioid, the patient would become tolerant to the med anyway, over time, and the potential benefits would eventually stop...


I completely understand wanting to be cautious, but are you saying LDN is an opioid like LSD? I can't find anything to that effect (and maybe I misunderstood). It is classified as an opioid receptor antagonist. Here is what the official website says:

"Naltrexone itself was approved by the FDA in 1984 in a 50mg dose for the purpose of helping heroin or opium addicts, by blocking the effect of such drugs. By blocking opioid receptors, naltrexone also blocks the reception of the opioid hormones that our brain and adrenal glands produce: beta-endorphin and metenkephalin. Many body tissues have receptors for these endorphins and enkephalins, including virtually every cell of the body's immune system."

For further explanation check this out. Great explanation of how it works:

http://autoimmunedisease.suite101.com/article.cfm/low_dose_naltrexone

Also, they've been discussing this on the UC forum. Someone is using it with great success. Here is the link to that thread:

http://www.healingwell.com/community/default.aspx?f=38&m=589536
EMom
Mother to 16 year old boy diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, calcium w/D3 and a good multivitamin.
Started The Maker's Diet in early September. Gradually learning/using more SCD recipes, too! (cooking challenged)


7007
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Date Joined May 2007
Total Posts : 59
   Posted 5/22/2008 7:25 AM (GMT -7)   
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
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Date Joined Feb 2007
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   Posted 5/22/2008 7:52 AM (GMT -7)   
EMOM said: "I completely understand wanting to be cautious, but are you saying LDN is an opioid like LSD?"

LSD is not an opiod.
Belleenstein:

30+ years living with Crohn's.


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 5/22/2008 8:14 AM (GMT -7)   
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.
EMom
Mother to 16 year old boy diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, calcium w/D3 and a good multivitamin.
Started The Maker's Diet in early September. Gradually learning/using more SCD recipes, too! (cooking challenged)


Illini
Regular Member


Date Joined Dec 2007
Total Posts : 298
   Posted 5/22/2008 9:11 AM (GMT -7)   
Thank you for posting 7007--very thorough and interesting! I look forward to reading more on your site.

Hookworms are one of the two things I'm especially curious about. The other is Xifaxan, an antibiotic that is also undergoing testing for Crohn's, but that is too expensive w/o prescription coverage. Both seem to have potential and appear less risky than many of the other new treatments. Plus both stay in the gut, where they are belong. In my mind that's an advantage over LDN.
July 2007 Drug-Induced Liver Injury
January 2008 Crohn's Ileitis
Currently trying...
Enteral Nutrition, Omega-3 (Flax Oil and Fish Oil), VSL#3, Vitamin E, Folic Acid, Psyllium


Roni
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Date Joined May 2003
Total Posts : 2480
   Posted 5/22/2008 10:19 AM (GMT -7)   
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... :-(

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 5/22/2008 11:24 AM (GMT -7)   
LDN is not usually prescribed to pregnant women. It can cross the barrier.
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
All suggestions/options/opinions are caveated with please consult with your local health care provider...

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