Low Dose Naltrexone

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Jamci
Regular Member


Date Joined Nov 2009
Total Posts : 27
   Posted 1/2/2010 9:36 PM (GMT -7)   
Has anyone heard of Low Dose Naltrexone (LDN) for treatment of Crohn's?

I've just read a bunch of material that seems promising but haven't seen it on these forums?
Current meds:  Apriso (4 caps-1x/day)
                         Antara (cholesterol - 1 cap/day)
                         Welchol (cholesterol - 3 at evening meal)
                         Cardizem (blood pressure - 1 cap/day)
                         Protonix (some reflux/Barretts - 1 tab/day)
                         Welbutrin (anxiety - 2 tabs/day (morning/evening)
                         Multi Vitamin (morning)
                         Fish Oil (evening)
                         Tylenol (sometimes for back pain)


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 1/2/2010 9:51 PM (GMT -7)   
I just started it a few days ago. No insomnia (the side effect I read about), so I'm happy about that!
34 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: Pentasa, Effexor XR, Zyrtec
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, B-Complex, Vitamins D, E, & K, Calcium, Magnesium, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 1/2/2010 11:37 PM (GMT -7)   
If you click on the "medications" link in my signature line you should be able to find some more information and some links to posts written by members who have tried LDN.

Sorry about the horrible formatting and I apologise that some of the links don't work. We lost some information when the server crashed earlier this year. I'm working on making a newer, updated version that should be easier to read.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 1/3/2010 3:26 AM (GMT -7)   
Thanks ivy I've copied the one's I need into a word pad format so I wont need to go searching for them in the future.
Male with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003.Had a gall bladder removed Nov. of 2009. Currently on 5-asa Salofalk ,Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. Entecort, Imuran and Prednisone in the past.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/3/2010 8:41 AM (GMT -7)   
We have a few members on LDN and have had many discussions about it. You might want to use our search feature to look up past posts about it. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 1/3/2010 3:10 PM (GMT -7)   
While my daughter was on one pill of Entocort (3 mg), she started taking 4.5 mg LDN. Then used the LDN to taper off Entocort, which she had been on for years. The most notable result of the LDN, aside from helping her taper off Entocort, was that it reduced her sed rate from 8 to between 2-4.
 
No side effects, except for the first two weeks -- after a few days on LDN, she started feeling very fatigued when she came home from work...went straight to her room for a nap (and this is somebody who almost never takes naps). She also had no appetite, some gas, and rumbling in her abdomen. But these side symptoms settled down by the end of the second week. We assumed her gut was getting used to the LDN - perhaps it was killing off bad bacteria?
 
She has been on only LDN for at least a couple of months. Also continues to follow the SCD diet, except for two foods -- she does eat rice and potatoes, which are not allowed on SCD.
 
It looks like she might be in remission but only a colonoscopy can tell for sure -- not surprisingly, she is not jumping at the chance to do a scope.
 
 
 


Daughter (22) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress. No symptoms for the past two years. Recent colonoscopy shows stricture gone but still two spots of inflammation in TI. Used LDN to taper off Entocort. Was on Entocort since April 06. Never had D. 4.5 mg LDN, SCD multivit, homemade yogurt, 5000IU vit D3, 500 mg calcium, 27 mg iron, monthly B12 shots, daily oral B12 1000. SCD diet modified to include potatoes and rice. 

Post Edited (njmom) : 1/3/2010 3:44:30 PM (GMT-7)


CrohnnieMan
Regular Member


Date Joined Aug 2008
Total Posts : 190
   Posted 1/3/2010 7:47 PM (GMT -7)   
You might find better search results with LDN instead of it spelt out.

I have been on 2mg of LDN for almost 2 months now. I have tapered completely off of the Imuran, tapered to 3 mg of Entocort a day and continue taking 1 Gram of Pentasa 4x/day. I noticed some side effects early on as described above. I noticed I got extremely fatigued during part of the day to where I could barely stay awake, but this went away after a few days. I also had some weird dreams the first few weeks, but they have gone away or don't notice them much anymore. I appear to be doing better and only after two months! I hope this continues as my bum is tired of feeling pain all day every day...

A little bummed today though. I forgot to pick up my Rx yesterday and all out of LDN for tonight....

dms40
Regular Member


Date Joined Oct 2009
Total Posts : 37
   Posted 1/3/2010 8:43 PM (GMT -7)   
My 16 year old son has been on LDN since the middle of August and is doing very well on it.  He did have 1 or 2 nights of dreams whenever he upped his dose (now at 4.5mg) but it never kept him awake at nights and he did not have the fatigue that others have talked about.  He also started the SCD diet about a month before the LDN.  He now has 1 bm/day - still has to watch certain foods on the SCD - he cannot do any dairy except limited amounts of cheddar cheese, I make the yogurt out of organic coconut milk. 
He was diagnosed with Crohn's in March 09, his imflammatory markers were 89 at that time (should be below 12), they came down to 46 in August, then from August to September (5 weeks) they came down to 12.  His hemoglobin also went up to normal within 5 weeks of taking LDN.  He steadily improved from August to December and then had a bit of a setback - not a typical flare as he still only had 1 BM/day, but runnier and more urgency in the AM.  From my research I understand that is quite common with SCD to have a 4 - 6 month setback - and he was right at 4 months, that took about 2 weeks to sort itself out and now he appears to be back to (his) normal.  He does still have a fistula that is draining but that has been steadily getting better also, in July he still had a fairly big abscess - by September it was almost gone, now it is gone and the fistula is slowly shrinking and becoming less painful to sit on.  

Dave D
Regular Member


Date Joined Aug 2005
Total Posts : 404
   Posted 1/6/2010 6:48 AM (GMT -7)   
I have an appointment with Cleveland Clinic-Weston,FL today. One more time of many I will have to explain to a Dr. (Colo Rectal) why I tried LDN three years ago. If it was so good, why don't more Dr's prescribe it? It's been around for years and used off label at least five.
My G.I. allowed me to try it basically because it probably could not hurt me. I found out differently after a 3 month honeymoon and supposed remission.
Dave D


Grandpa Dave is 70.
IBD since 1977
Perforation and resection 1993
Diagnosed as Ulcerative Colitis 1994
Received J-Pouch 1997
Diagnosed as Chron's 2004
Redo, resection, and remove camera capsule 2005
Unsucessfully tried LDN 2007
Contracted Scleritis of the Eye 2008
Four Grandkids
Older than dirt

Post Edited (Dave D) : 1/6/2010 7:12:46 AM (GMT-7)


CrohnnieMan
Regular Member


Date Joined Aug 2008
Total Posts : 190
   Posted 1/6/2010 8:37 AM (GMT -7)   
Dave,

Would you mind sharing some additional information? I have started taking it recently and curious as to what happened.

spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 1/6/2010 12:18 PM (GMT -7)   
I've read that you need to be on an anti-candida diet for LDN to work effectively. I think they say you should be gluten free too.
34 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: LDN, Pentasa, Effexor XR, Zyrtec
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, Vitamin D, Calcium, Magnesium, Coconut Oil, Garlic Oil, CoQ10, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


Dave D
Regular Member


Date Joined Aug 2005
Total Posts : 404
   Posted 1/6/2010 12:26 PM (GMT -7)   

Three years ago I was doing okay on Imuan and Entocort but I thought I would give it a try. By the end of the first month I was off the Entocort. By the end of month two I was off the Imuran and heading for remission. I was doing well. Then I began losing the sight in my right eye. I was treated for nearly a year for posterior scleritis, another autoimune disease. My eyesight in that eye was 20/400 and it was now attacking the other eye.

Now, two years later I wear prism glasses ; must take pred, Humira, and Imuran. I can onlly go maybe two months before I need Iron or blood due to occult bleeding. I have had 12 units of blood and four Iron infusions in the last year. That's why I am sitting here at CC.

I think the worst part of switching to LDN is stopping the other meds.  The other is that one G.I. said "sometimes strange things happen when you stop Imuran."

Dave D

 

  


Grandpa Dave is 70.
IBD since 1977
Perforation and resection 1993
Diagnosed as Ulcerative Colitis 1994
Received J-Pouch 1997
Diagnosed as Chron's 2004
Redo, resection, and remove camera capsule 2005
Unsucessfully tried LDN 2007
Contracted Scleritis of the Eye 2008
Four Grandkids
Older than dirt


CrohnnieMan
Regular Member


Date Joined Aug 2008
Total Posts : 190
   Posted 1/6/2010 1:09 PM (GMT -7)   
So sorry to hear that Dave. I had been taking Entocort, Imuran & Pentasa. I have been on LDN for about 2 months and tapered off of the entocort and imuran. I hope I don't have the same result. How much Imuran were you on and taking now?

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 1/6/2010 2:10 PM (GMT -7)   
ChronnieMan, I hope you are doing well. Have you noticed any improvements while on LDN?
 
Why only 2 mg, when the recommended therapeutic dose is 4.5mg LDN?
 
Have you had blood tests done recently to make sure the LDN is helping? Also, that it is not causing any hidden side effects?
 
 
Daughter (22) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress. No symptoms for the past two years. Recent colonoscopy shows stricture gone but still two spots of inflammation in TI. Used LDN to taper off Entocort. Was on Entocort since April 06. Never had D. 4.5 mg LDN, SCD multivit, homemade yogurt, 5000IU vit D3, 500 mg calcium, 27 mg iron, monthly B12 shots, daily oral B12 1000. SCD diet modified to include potatoes and rice. 


CrohnnieMan
Regular Member


Date Joined Aug 2008
Total Posts : 190
   Posted 1/6/2010 3:23 PM (GMT -7)   
I feel better and definitely have less BMs. My doctor was using it as "let's see if this works" drug. I asked him to increase after a month and he said no. I have a follow up appt middle of next month and will see if he will increase at that time. I have not had any blood tests recently so I might at my next appt.

EDIT: I also asked my Dr. about tapering off of Imuran and Entocort and was told no. After a month on LDN I took about a 1 1/2 months taper off the Imuran. We are trying to have a baby and saw birth defects as a side effect so I decided to taper (plus it is supposed to conteract LDN).

Post Edited (ChronnieMan) : 1/6/2010 3:28:12 PM (GMT-7)


BeeSting
Regular Member


Date Joined Nov 2008
Total Posts : 392
   Posted 1/6/2010 3:24 PM (GMT -7)   
I am so sorry what happened to you Dave, and you'll probably never know what actually was the cause of your scleritis. This eye inflammation of yours might also develope from Crohns disease itself, as far as I know this is one of the extra intestinal diseases that may happen from time to time.

Here are some good links to learn more about LDN (that still is working really well for me, have now used it for more than 2 years)

www.ldndatabase.com click on Crohns and read what other have found out.
www.ldninfo.org
or go to some of the yahoo groups, register as a member and just read what other have found out about LDN. There is one group for us with IBD.

Also:
for inspiration, and to find out WHY doctors don't know too much about it, look at Dr. Chris Steele's video:
http://www.youtube.com/watch?v=5p5nhzP2OaI


You don't have to go gluten free to use LDN, you don't have to use the SCD. For me and many others LDN works anyway, but I do lay off sugar, because sugar always increases inflammation a LOT. I also don't eat too much wheat flour. It's said to trigger inflammation as well. Read about this at Dr. Mercolas sites.
Only those that still have the same problems while on LDN are suggested to test for candida overgrowth (LDN have problems working if a candidiasis is found), some others are suggested to try avoiding gluten and sugar for a month to find out if this is an underlying problem, others choose to use the SCD in combination with LDN and are doing super well on that combo. / Good luck

Former58D
Regular Member


Date Joined May 2009
Total Posts : 173
   Posted 1/6/2010 3:52 PM (GMT -7)   
I took LDN for 3 months with no noticeable improvement.
"What can't be changed must be endured" - unknown

DX with distal Crohn's colitis Oct 2007, predominantly in rectum
Colozal (750mg): 3 pills 3xdaily
Cortifoam - 1 nightly
6MP - currently at 100mg and waiting for response......


riesasmom
Regular Member


Date Joined Dec 2009
Total Posts : 44
   Posted 1/6/2010 4:08 PM (GMT -7)   
My 14 year old daughter also did well on 3mg LDN for almost a year, then relapsed in November after cheating for a few months on the SCD diet. She is back down to 10mgs of Prednisone and started back on the LDN last night. Hoping she can stick to the diet as I think it was very important for her remission. There is alot of very informed people on the LDN/IBD yahoo chat site. They were very helpful to me many times when needing information and advice. My daughter had no side effects on LDN except good ones. She gained 12lbs and grew 2 inches in only 4 months. I hope we can repeat that this time around as she has some catching up to do with her weight and height. Diana

CrohnnieMan
Regular Member


Date Joined Aug 2008
Total Posts : 190
   Posted 1/6/2010 4:20 PM (GMT -7)   
Former,

I've read on a lot of LDN websites it can take several months to work. But as with all meds somethat works for that guy may not work for me. Since I've been diagnosed with Crohn's the only time I felt well for extended periods of time was when I took prednisone. With LDN I am feeling a lot better with maybe one bad day a week instead of 5 or 6 bad days.

Dave D
Regular Member


Date Joined Aug 2005
Total Posts : 404
   Posted 1/7/2010 12:20 PM (GMT -7)   
My bad times really started wth the scleritis diagnoses after coming off LDN. Understant that since I have had two hard years of Prednisone, Remicade, and Humira. I have had numerous transfusions and Iron infusions for my acute anemia.
Currently I am under study for a full permenant collectomy with ileostomy

Obviously I can not precisely blame it on the LDN, but while it might be nice to be a pioneer, remember that some of them were shot. I'll for one will not try another off label drug, if I survive.
Dave D
Grandpa Dave is 70.
IBD since 1977
Perforation and resection 1993
Diagnosed as Ulcerative Colitis 1994
Received J-Pouch 1997
Diagnosed as Chron's 2004
Redo, resection, and remove camera capsule 2005
Unsucessfully tried LDN 2007
Contracted Scleritis of the Eye 2008
Four Grandkids
Older than dirt


BeeSting
Regular Member


Date Joined Nov 2008
Total Posts : 392
   Posted 1/8/2010 4:28 PM (GMT -7)   
CrohnnieMan, what is your dose now? While being active on the yahoo sites, for years, I've found that the LDN dosage could be any place between 1.0 mg and even less for those hyper sensitive to drugs, or for those that LDN kicks in at a really low dose. It's also possible to increase the dose for us up to 6.0 mg a day (always best taken by night before bed time). Everyone have to find their dose by often a slow increase of dosage. It's important though that you never take more than 6 mg, but as far as I know, children often stops at 3 mg and adults at 4.5 mg.

What's also important to know is that LDN don't kick in the day after you start to use it, often it takes longer time, and several users have found it to kick in more than 6 months after starting it. Other again find it working gradually, for me it kicked in due to pain the next day after my first nightly pill, and during half a year I gradually improved, I was in a middle of a flare when I started using it, and the diarrhea and bloating was all gone within a couple of weeks. I used to have partial obstructions quite often, some times a month, actually, when LDN improved my inflammation I found It took a year to get another obstruction. Have had some very short flares, but by using Vitamin D 3, probiotics (the SCD yogurt) 10 - 14 days with prednisone at minimal doses (less than 10 mg/day), my flares was fading out within short time. / Bee

Post Edited (BeeSting) : 1/8/2010 4:36:46 PM (GMT-7)


CrohnnieMan
Regular Member


Date Joined Aug 2008
Total Posts : 190
   Posted 1/9/2010 11:27 AM (GMT -7)   
I am currently on 2MG. Been taking for about 2 months now. Definite improvement after a month taking it. I just recently started taking Vitamin D (~1200 - 1400 IU/day). The doctor recommended a certain probiotic called Florastor, but haven't taken any more since the samples ran out.
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