Low Dose Naltrexone

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ExJohnson
Regular Member


Date Joined Feb 2009
Total Posts : 128
   Posted 2/19/2009 4:00 PM (GMT -7)   
Sorry everyone, I couldn't find the original forum for this topic. 
 
I'm starting sometime next week, it's been about four weeks since my last remicade infusion, and I hear immunosuppressants and LDN fight each other when taken together.  Would rather take LDN (side effects- safer than aspirin). I've read about people complaining about LDN not being approved by FDA, it won't be, not for a long time.  It's a medication readily and cheaply made that sells for $15-40 a month.  All the developement research was paid for by the govt., so no company can patent it.  There is no profit margin, thus no Pharmaceutical Reps telling docs about it, or Pharma companies sending research reports to the FDA for evaluation.  That's just the times we live in.  I think if your doc gives you grief over requesting it, say the dosage is one percent of toxic levels, it's approved at 50 mg a day, and bring up the FDA and Pharma companies.  Your doctor took an oath, they know what's going on.  THis med has virtually no side effects, so offer to put something in writing for him/her if they are hesitant. 
I am a pre-30yr. old who has been diagnosed with Crohn's for 14 years.  Symptoms change from cramping and weight loss to severe anemia with fatigue and diarrhea. 
I'm DONE (D-O-N-E, DONE!!!) with immuno-suppressants.  Tremble, yee Pharmacuetical companies, for you will not withstand the aggressive onslaught of our healing!
new prescription from natural doc,
3.5 grams Chlorella daily.
4.5 mg Low Dose Naltrexone nightly. 


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 2/19/2009 4:14 PM (GMT -7)   
There are some LDN discussions in the new meds thread, which I've just bumped for you.
Co-Moderator Crohn's Forum.


ExJohnson
Regular Member


Date Joined Feb 2009
Total Posts : 128
   Posted 2/19/2009 4:15 PM (GMT -7)   
you're the best!
I am a pre-30yr. old who has been diagnosed with Crohn's for 14 years.  Symptoms change from cramping and weight loss to severe anemia with fatigue and diarrhea. 
I'm DONE (D-O-N-E, DONE!!!) with immuno-suppressants.  Tremble, yee Pharmacuetical companies, for you will not withstand the aggressive onslaught of our healing!
new prescription from natural doc,
3.5 grams Chlorella daily.
4.5 mg Low Dose Naltrexone nightly. 


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 2/19/2009 4:15 PM (GMT -7)   
i asked my doc about it last night...he said he hadn't heard much but is going to a seminar at Mayo next week and is going to see if it is mentioned.

ExJohnson
Regular Member


Date Joined Feb 2009
Total Posts : 128
   Posted 2/19/2009 4:20 PM (GMT -7)   
Mayo is a heavy in this kind of thing, once they do something, many will follow.
I am a pre-30yr. old who has been diagnosed with Crohn's for 14 years.  Symptoms change from cramping and weight loss to severe anemia with fatigue and diarrhea. 
I'm DONE (D-O-N-E, DONE!!!) with immuno-suppressants.  Tremble, yee Pharmacuetical companies, for you will not withstand the aggressive onslaught of our healing!
new prescription from natural doc,
3.5 grams Chlorella daily.
4.5 mg Low Dose Naltrexone nightly. 


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 2/19/2009 6:16 PM (GMT -7)   
Hi ExJohnson! Welcome to the forum! Yes, we've had quite a few people here on LDN. Some have stuck around to give feedback, some have not. You can learn a lot, though, on the yahoo group for LDN users. Folks there are using it for many different issues, but plenty are using it for Crohn's. Just thought I'd let you know!
Mom to 16 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium w/D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Incorporate Specific Carbohydrate Diet (SCD) recipes, too.


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 2/19/2009 7:06 PM (GMT -7)   
i hope they talk about it at the Mayo thing! It sounds promising and I want to try it.

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1494
   Posted 2/19/2009 8:21 PM (GMT -7)   
Has anyone heard of the status of LDN in Canada? As far as I know, it can't be prescribed for Crohn's here. I've never inquired about it to our GI, but it's never even been mentioned at the clinic. It sounds so promising. Hopefully not snake oil. I would really prefer my daughter at least try this before resorting to Imuran.
My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 2/19/2009 9:37 PM (GMT -7)   
73monte, if you don't get an answer to your question, please post a message on the LDN yahoo group. The people there are literally from all over the world and know the "ins and outs" of how to get it. I am CERTAIN there are Canadians there. Also, did you see my answer to your question under the mushroom thread?

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1494
   Posted 2/20/2009 10:34 AM (GMT -7)   

Hi EMom,

I'll check the site out. I did get your reply about the Reishi. Not to threadjack, but I find it so interesting what's gone on with your son. I'm glad to hear that by you being proactive, has got him to the point he's at now. I'm so worried about Imuran. Im worried that if she takes it and gets any of the numerous side effects, or not take it and end up with the disease getting out of control.

Thanks, Tom.


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 2/20/2009 10:47 PM (GMT -7)   

The latest from the LDN website:

http://www.lowdosenaltrexone.org/

Abstract of an article from the American Journal of Gastroenterology about LDN for Crohn's:

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

OBJECTIVES: Endogenous opioids and opioid antagonists have been shown to play a role in healing and repair of tissues. In an open-labeled pilot prospective trial, the safety and efficacy of low-dose naltrexone (LDN), an opioid antagonist, were tested in patients with active Crohn's disease. METHODS: Eligible subjects with histologically and endoscopically confirmed active Crohn's disease activity index (CDAI) score of 220-450 were enrolled in a study using 4.5 mg naltrexone/day. Infliximab was not allowed for a minimum of 8 wk prior to study initiation. Other therapy for Crohn's disease that was at a stable dose for 4 wk prior to enrollment was continued at the same doses. Patients completed the inflammatory bowel disease questionnaire (IBDQ) and the short-form (SF-36) quality of life surveys and CDAI scores were assessed pretreatment, every 4 wk on therapy and 4 wk after completion of the study drug. Drug was administered by mouth each evening for a 12-wk period. RESULTS: Seventeen patients with a mean CDAI score of 356 +/- 27 were enrolled. CDAI scores decreased significantly (P= 0.01) with LDN, and remained lower than baseline 4 wk after completing therapy. Eighty-nine percent of patients exhibited a response to therapy and 67% achieved a remission (P < 0.001). Improvement was recorded in both quality of life surveys with LDN compared with baseline. No laboratory abnormalities were noted. The most common side effect was sleep disturbances, occurring in seven patients. CONCLUSIONS: LDN therapy appears effective and safe in subjects with active Crohn's disease. Further studies are needed to explore the use of this compound.

Answers the question of how LDN can be acquired:

http://www.lowdosenaltrexone.org/#How_can_I_obtain_LDN


BeeSting
Regular Member


Date Joined Nov 2008
Total Posts : 392
   Posted 2/21/2009 9:50 AM (GMT -7)   

Hi ya all,

I have been on LDN, Low Dose Naltrexone, for 1.5 years. LDN is made in small 4.5 mg or 3.0 mg pills from the medicine Naltrexone or Revia (Re Via). In big doses, from 50 mg and more, it has been used as an opioid receptor blocker for more than 30 years. Under brand names like Revia or Naltrexone Vitaflo or other names). Without any known severe side effects. When using only up to the optimal dose 4.5 mg per night it's giving you far less side effects than an aspirin during the first 7 - 10 days. Then NO side effects. The known side effects are often sleep disturbances. Some can't sleep and often use melatonin or a mild sleep aid during the first week. After 10 days it's most likely you have no sleep problems. Sleep disturbances happens to 20 % of those just started using LDN. The rest have no side effects at all.

As Emom writes, there is a yahoo group where people can register to learn more by asking other Crohnies questions about LDN.

Canada: Yes, it's possible to get LDN also in Canada. Just ask when you are visiting the yahoo group. Crystal, one of those with MS is a fantastic advocate for LDN, and she keeps a list with doctors that is willing to prescribe LDN if your own doctors refuses.

Crohns kids are also doing well on LDN! Some of them have stopped using remicade or prednisone.

Being on LDN is easy since we'll get a super immune system just within weeks. Trying LDN require being patience and it's often helping avoiding your food triggers and stress. You are able to combine asacol and LDN. If you're getting a flare while on LDN taking prednisone for just a few weeks will calm the flare down. You often don't need more than 10 mg prednisone as an initial dose. According to the doctors and the pharmacists active in the group - it's no problem mixing prednisone and LDN for a short period of time. cool Take care!

Post Edited (BeeSting) : 2/21/2009 9:54:32 AM (GMT-7)


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 2/21/2009 7:35 PM (GMT -7)   
I started LDN in a flare, and I think that might have been why I didn't experience much luck in the long run. I think that once my guts are a bit more healed (they are severely ulcerated w/absorption probs right now), maybe I will try it again.

It is promising, and definitely worth researching. At the same time, if you're flaring, don't expect a miracle cure (most of us know better anyway,but just for the record!). It couldn't bring be back from the dark side, but once in remission I am going to consider it as a maintenance med.
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds
Noticing a real difference with a Gluten-Free diet.
Currently on:
Cimzia (loading doses 2-12-09)
Probiotics, Digestive Enzymes, and Prednisone


BeeSting
Regular Member


Date Joined Nov 2008
Total Posts : 392
   Posted 2/27/2009 4:57 AM (GMT -7)   

 

I am quite sure you're right, stopping a flare by using LDN is not easy. As you write, it may give you another outcome to start when things have calmed down. If you are able to use Asacol, it's ok to use it with LDN. You can also start using LDN while tapering off of prednisone. The most people I have been posting with have been adviced to start with LDN as soon as you are down on 10 mg prednisone. You could later on use a lower dose of prednisone for a longer range of time, just for the maintanance, and then in combination with LDN.

By the way, here's a link to a database that I've found, where there's a lot of LDN users filling in their experiences with LDN, and it's not only Crohns patients, but a lot of other diseases as well.

Enjoy: http://www.ldn-database.carnebeach.com

 


ExJohnson
Regular Member


Date Joined Feb 2009
Total Posts : 128
   Posted 2/27/2009 2:37 PM (GMT -7)   
That LDN database is VERY encouraging. Really great stories. THe story of the fifteen year old girl made me tear up a little. I'm excited to start the medication soon, and I will keep anyone posted who wants to be.

What gets me so pumped about the prospect of LDN is that it is an immune BOOSTER, not a suppressant.  I understand the need for steriods in some situations, but again, they shut off the immune system like a light switch (poor analogy, but you get me).  So does 6mp, Remicade, Imuran, Humira, all the new stuff.  I don't want to shut down my immune system so I can worry about cancer and liver disease later. 


I am a pre-30yr. old who has been diagnosed with Crohn's for 14 years.  Symptoms change from cramping and weight loss to severe anemia with fatigue and diarrhea. 
I'm DONE (D-O-N-E, DONE!!!) with immuno-suppressants.  Tremble, yee Pharmacuetical companies, for you will not withstand the aggressive onslaught of our healing!
new prescription from natural doc,
3.5 grams Chlorella daily.
4.5 mg Low Dose Naltrexone nightly. 

Post Edited (ExJohnson) : 2/27/2009 4:42:11 PM (GMT-7)


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 2/27/2009 6:07 PM (GMT -7)   
Have any of you switched to LDN while in remission?

Female, Age 20 (formerly ComedyDork)
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (6 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 20 mg Prozac, VSL #3
 


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 2/27/2009 6:18 PM (GMT -7)   
do people on LDN continue on their other meds? my doc was not familiar, but it sounds promising...and if there are no side effects other than the dream thing why not give it a shot??

ExJohnson
Regular Member


Date Joined Feb 2009
Total Posts : 128
   Posted 3/3/2009 7:35 AM (GMT -7)   

hey mgtman,

In all my research on Crohn's it seems there are two schools of thought as to how to treat it, although they all follow the same two step program.  1. Manipulate the immune system, and 2. limit damaged lining.  Traditional medications like 6mp and Remicade and steroids, and even your sulfasalazines are immuno-suppressants, meaning they weaken the immune system enough so that it doesn't have the energy any more to attack you.  Once syptoms are restored than the lining of the intestines can be healed, but not all the time, and so sometimes surgery is seen as an option to limit damaged lining.  The other school of thought is the immuno-booster manipulation, give people asian mushrooms, probiotics, chlorella, organic foods, aloe vera juice, and other like foods and this slow process boosts the immune sysem (some would say 'corrects it') and you then take glutamine powder or soothing foods to heal the lining.  This natural approach takes a long time, needing fasting to prep the body, a detox to clarify the immune system, and generally a 100% slow down on every aspect of your life except concentrating on healing. 

What is so great about LDN is that it is an immuno-booster that works faster than the 100% natural approach, and it has none of the side effects of all those immuno-suppressants.  I want the future of my crohn's control to be a strong immune system, not a weak one.  I don't want to add cancer to my list of worries, and you need a strong immune system to fight cancer.  SO I'm definitely trying to control my eating habits and envrionment, but I think LDN might be that extra boost we all need. 

 


janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 3/3/2009 7:54 AM (GMT -7)   
I'm going to hopefully start LDN this week too. I'll keep you all posted.
:)
-janice

mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 3/3/2009 8:50 AM (GMT -7)   
ExJohnson said...

hey mgtman,

In all my research on Crohn's it seems there are two schools of thought as to how to treat it, although they all follow the same two step program.  1. Manipulate the immune system, and 2. limit damaged lining.  Traditional medications like 6mp and Remicade and steroids, and even your sulfasalazines are immuno-suppressants, meaning they weaken the immune system enough so that it doesn't have the energy any more to attack you.  Once syptoms are restored than the lining of the intestines can be healed, but not all the time, and so sometimes surgery is seen as an option to limit damaged lining.  The other school of thought is the immuno-booster manipulation, give people asian mushrooms, probiotics, chlorella, organic foods, aloe vera juice, and other like foods and this slow process boosts the immune sysem (some would say 'corrects it') and you then take glutamine powder or soothing foods to heal the lining.  This natural approach takes a long time, needing fasting to prep the body, a detox to clarify the immune system, and generally a 100% slow down on every aspect of your life except concentrating on healing. 

What is so great about LDN is that it is an immuno-booster that works faster than the 100% natural approach, and it has none of the side effects of all those immuno-suppressants.  I want the future of my crohn's control to be a strong immune system, not a weak one.  I don't want to add cancer to my list of worries, and you need a strong immune system to fight cancer.  SO I'm definitely trying to control my eating habits and envrionment, but I think LDN might be that extra boost we all need. 

 

thanks.  i am going to ask my doc again...also seeing another GI next week so I'll get his thoughts as well.


ExJohnson
Regular Member


Date Joined Feb 2009
Total Posts : 128
   Posted 3/17/2009 7:29 PM (GMT -7)   
been eight days since on LDN at 4.5mg. Haven't noticed any considerable difference, though pain has lessened in the past few days. I also bought a juicer for vitamin supplementation, we'll see how it all works together. Hope everyone is doing well.
I am a pre-30yr. old who has been diagnosed with Crohn's for 14 years.  Symptoms change from cramping and weight loss to severe anemia with fatigue and diarrhea. 
I'm DONE (D-O-N-E, DONE!!!) with immuno-suppressants.  Tremble, yee Pharmacuetical companies, for you will not withstand the aggressive onslaught of our healing!
new prescription from natural doc,
3.5 grams Chlorella daily.
4.5 mg Low Dose Naltrexone nightly. 


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 3/17/2009 8:29 PM (GMT -7)   
ExJohnson said...
been eight days since on LDN at 4.5mg. Haven't noticed any considerable difference, though pain has lessened in the past few days. I also bought a juicer for vitamin supplementation, we'll see how it all works together. Hope everyone is doing well.

how long do they say it takes to typically see effects from the LDN?
My new doc was not familiar, but he asked me to bring him the info I have when I see him again next week.

ExJohnson
Regular Member


Date Joined Feb 2009
Total Posts : 128
   Posted 3/18/2009 6:35 AM (GMT -7)   
i think the standard is about four to six weeks. SOme react sooner, others at a slower pace.
I am a pre-30yr. old who has been diagnosed with Crohn's for 14 years.  Symptoms change from cramping and weight loss to severe anemia with fatigue and diarrhea. 
I'm DONE (D-O-N-E, DONE!!!) with immuno-suppressants.  Tremble, yee Pharmacuetical companies, for you will not withstand the aggressive onslaught of our healing!
new prescription from natural doc,
3.5 grams Chlorella daily.
4.5 mg Low Dose Naltrexone nightly. 


janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 3/18/2009 7:42 AM (GMT -7)   
I was really excited to try it. Already have it, and then 2 days after I started my bloodwork from before I started came back hyperthyroid out of the blue. My thyroid had been test a gazzillion times before and it was normal!! I'm hoping it's a reaction to all the CT iodine-based dye and will subside. I made an appt with an endocrine guy it's late next week. fingers crossed. With all the hypothyroid folks on it being able to reduce their meds you can only imagine what it would do to a hyperthyroid person. darn darn darn.

thnk good thoughts for me!! and I've sending healing thoughts to all of you!

ExJohnson
Regular Member


Date Joined Feb 2009
Total Posts : 128
   Posted 3/18/2009 8:22 AM (GMT -7)   
wow, janicea, good luck with all that. No matter how much you study and try to understand this stuff, it can still get way to confusing. Good luck to you!
I am a pre-30yr. old who has been diagnosed with Crohn's for 14 years.  Symptoms change from cramping and weight loss to severe anemia with fatigue and diarrhea. 
I'm DONE (D-O-N-E, DONE!!!) with immuno-suppressants.  Tremble, yee Pharmacuetical companies, for you will not withstand the aggressive onslaught of our healing!
new prescription from natural doc,
3.5 grams Chlorella daily.
4.5 mg Low Dose Naltrexone nightly. 

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