LDN questions

[g_1988]

Hi all,

I heard about LDN over a year ago but I never gave any thought to asking my doctors for it. Recently, I've been reading more and more about LDN and there seems to be a pretty common theme amongst promoters that it works for a huge array of diseases. Everyone who promotes this drug talks about how great it is statistically, but there isn't many high quality medical trials so far and there doesn't seem to be such a large amount of positive feedback about LDN on the forums here.

I'm not currently taking any of the standard drugs for my Crohn's but it's still active. I take 3 immodium capsules a day and wind-eze which seems to control my symptoms nicely. I also started taking frankincense extract (boswellic acid) last year which works surprisingly well considering it's a "naturopathic" therapy.

Anyway, I'd love to stop taking frankincense extract, immodium and wind-eze and try LDN. It sounds great, but is it really as good as all the professionals say? I am confused about a few things:

1. How long does it actually take before it works? All previous treatments I've tried take only days to weeks but I've scanned over the posts here and some people say they're on week 7 or 8 with improvement only noted the previous week.

2.What about doses? 4.5 mg seems to be a standard, but how do I know if it's too much or too little for me? Some people have spoken about taking a day or two break each week so as to not "build up" the drug in your system. I couldn't see anything about this on the lowdosenaltrexone.org web site.

The LDN website also makes mention of making absolutely sure you get the right type of capsules, saying not to use slow release because you need a "spike" in your blood levels. It also talks about getting it compounded properly. Can anyone explain what this means? I've no idea what it means to "compound" a drug.

3.What are your experiences with this drug? My Crohn's disease activity index is currently only about 60 I think. I used an online calculator to calculate this and it came back with 62, although I wasn't able to input my hemocrit levels.

Thanks for reading.

 

[phillycrohns]

Hi G 1988:

I have been on LDN for a little over one year. My situation is a bit complicated in that I have been doing another treatment concurrently with LDN, so it is hard to determine which is/is not working, and what is actually happening. But long story short, I am not one of the people who have gone into remission within 3 mos of beginning LDN--though there are people who responded that quickly. However, I will not stop taking it for a variety of reasons. Why? Because I believe that everyone's disease triggers/mechanisms are different and thus treatments respond differently for different people. Some people respond within one month (as per a nurse who worked on the LDN/Crohns clinical trial at Penn State Hershey) others it takes up to 3 months or more. Also, just because I am not fully in remission does not mean that LDN is not working in other ways, especially preventitively (that is my opinion and some may not agree with me). And though it may not work 100% for my crohn's, it may help prevent me from getting worse or developing other diseases. I spoke to someone who works at Dr. Bihari's office (Dr. Bernard Bihari is the pioneer of LDN use) and he told me that everyone in the office takes LDN, not to treat any specific illness, but simply for prevention purposes--especially cancer prevention. So, I do not plan on stopping it.

So that being said, if you try LDN, be patient and give it time to work! I started off at 1.5 mgs for 2 weeks, then increased to 3 mgs for weeks and since then have been at 4.5 mgs. 4.5mgs is considered (generally) to be the optimal dose. I had very minro side effects like appetite suppression and vivid dreams, but that went away within a month. Hopefully, there will be more testing on this substance in the future that will work out the dosing. But for now, 4.5mgs is generally considered standard. However, should you reach 4.5 mgs and feel side effects that are unbearable that you did not feel at 3 mgs, you may consider taking the lower dose. If you are really concerned, you may want to get your LDN script written for .5mgs so that you can increase your dosage by .5 mgs and increase very slowly.

In addition to LDN, I have received intravenous Alphia Lipoic Acid treatment last May--I am currently still doing the treatment, only orally now. I do feel that my insides are SLOWLY changing--I was told by Dr. Berkson (who gave me the ALA treatment) that this is a slow working therapy and takes time. That being said, I feel different. But I do still have some minor bleeding and mucus and slight pain occassionally. But it is nowhere near where I had been. I am getting better very very very slightly everyday. My treatment regimine has taught me to be very patient.

Good luck to you. I hope LDN puts you into remission.

Christine

 

[hopeful]

Look up the questions and answers page on LDNscience.org - most of your questions are answered there

 

[D Bergy]

Hello,

I use LDN but I also use several other treatment methods, mostly alternative in nature. I cannot say LDN is the only thing keeping me in remission, nor do I believe that myself, but I do think it helps in the long run.

LDN works differently in that it prods your immune system to work better or stronger. It has no direct effect on Crohn's or any other disease. That is one reason why it is not a quick fix. The mechanism is indirect, so it takes time to see results.

How much does your immune system have to overcome before your symptoms improve? I think every one of us is different in that respect. If you have been using immune suppressants for twenty years or so, you probably have a long road ahead of you start LDN. Once you start LDN you are basically reversing your treatment method.

On the other hand, if you are like me, and never used any immune suppressing drugs, I think there is less of a transition time involved. Even this is vastly over simplified as the number of variables is unknown. Diseases like this are not the same across the board, so any estimate is guesswork.

Dosing is pretty important in my opinion. Most people do OK on the standard dose, but if you are having difficulties at that dose, I would certainly try less. If you think of it as trying to balance your immune function the best you can, it makes sense that one size does not fit all.

I take two days off out of eight, to prevent any build up of LDN in the Liver. This is pure speculation that it builds up in the liver. It may not do that at all, but on the other hand, I can get by just fine doing this. I am also more worried about the body becoming tolerant and compensating for the LDN. I do not want to become resistant to it, as most other drugs have this problem. Again, this is speculation, and there is no evidence that I am aware of proving this happens, but I am very careful with my treatments, and as you can tell, I think a lot about this.

LDN is a very diluted form of the original drug Naltrexone, which is used for substance abuse in its much higher original dosage. Drugs are often compounded by the pharmacist when the manufacturer does not make the dosage desired, or when a manufacturer does not make a particular formulation of a drug.

Here the important thing is to use one of the approved LDN pharmacies on the www.lowdosenaltrexone.org website. There is no reason to use any other pharmacy, as you can have it delivered anyplace. I use “The Compounder” in Aurora Illinois. “Skip’s Pharmacy” in Florida is another good source. Don’t risk your results using a pharmacy that has to learn how this is done properly.

It is generally thought that six months and even a years time is needed to see if LDN is going to be beneficial.

That is a disadvantage, but it also has many advantages that make it worth trying.

Bottom line is, it is either going to work for you or not. The only way to know is to try it.

I think your Frankincense treatment is interesting. Another supplement that has the right characteristics to possibly help with Crohn’s, in my estimation is Worm Wood. I have just finished a round of treatment with it. I have no symptoms, so I cannot determine how well it worked, but it did not make me flare or have any other negative effect.

Good Luck

Dan

 

[mizgarnet]

I am a LDN newbie. I started LDN November 24, 2010. I started at the 4.5ml dosage (I buy the 50mg Naltrexone and disolve it in distilled water) but had to lower the dosage. I now take 4.0ml a day. Your body will let you know if you need to adjust the dosage. The positives I have experienced on LDN have been interesting. I have a better tolerance for the stuff that happens at work. I am generally more relaxed. Food is more appealing. I actually want to eat healthier. I have more formed stools. The big D is now only around during stress and I foolishly eat the wrong thing. I do still experience gas and some pain. These episodes are happening less frequently and I personally think it is my body "adjusting" to becoming healthier. The gas and pain are actually different from my Crohn's gas and pain. My body generally feels different. Cuts and scratches heal much faster. I am losing the tired look. Some days I still take a nap after work but it is only for 20 minutes vs. the rest of the day and night.

I take Boswellia, L-glut., ALA, Super B complex, and probiotics. I use Oil of Oregano if I need antibiotics. I try to stay on the naturopathic side of life.

 

[g_1988]

Hi guys,

First, thanks for your replies. Hopeful, I've had a good look on the ldnscience.org web site and there's a lot of interesting information. On the FAQ section it has a question "How quickly can one expect to see benefit from LDN?" and the answer says: "Most users typically experience benefit within days. If no benefit has been seen by the end of one month, it may be necessary to modify the dose being taken. If the dose adjustment does not help, it is unlikely that benefit will be seen from LDN in such cases."

So that is contradictory to what most of the posts here say. I don't know what to think right now, but if people are saying it has taken them months to notice change, then I'm not going to accuse anybody of lying. It does seem bizarre to me for any drug treatment of this nature to take up to one year before it begins working, when its very action takes merely hours, but I have no basis for argument and that is just my opinion.

Dan, I am also not taking any immunomodulators and haven't been for approximately 16 months. It is my understanding that these typically take around 3 months to stop having an effect once you cease treatment.

I'm still keen to try LDN but it seems that real patients opinions are nothing like what I've read about this drug. So far I'm under the impression that the effects are not nearly as powerful or fast acting as is purported by the promotors. I'm also assuming that it is common for people who do try this to still be taking their regular drugs, which would seem contradictory if those drugs are immunosuppressants. One issue I would have is that I take Immodium to slow down my bowels, which has normalised my bowels for quite some time now. I don't want to start having diarrhea again so I'm going to have to find another solution. Before I started Immodium, I took capsules of fiber (psyllium husk) before meals which worked great, too, so I'll probably go back to try those.

If I am able to get this drug from my gastroenterologist (which I doubt), I am sure I will be able to tell if it's working, since my condition has been generally very stable, I'm not on drugs (I don't include Immodium as a Crohn's altering drug, only a symptom suppressant) and if I get better there wouldn't be anything else to associate that improvement with.

Dan, I'm interested to know more about your case. You said you've never been on immunomodulators, which from what I have experienced are first line drugs for Crohn's. Is your Crohn's in remission, how did you achieve this? How serious was your diagnosis? Mine was diagnosed as "severe", but apparantly I've easily been able to stop drug therapy and suppress my symptoms with much less potent drugs, albeit to the dismay of my gastro. I don't know why opiates like Immodium aren't used more commonly for diarrhea, it was a god-send for me. Virtually all the pain I experienced was stopped promptly by a combo of Immodium and Wind-eze, but the doctor still wanted me on Azathioprine and even offered me surgery. I'm pretty sure he won't be open to the idea of LDN, as he has strongly expressed his views in the use scientifically proven therapies over more anecdotal and off-label treatments such as these. I might have some luck with my GP, though, as he has been very open to letting me try things which *I* think might work, such as when I wanted to try a course of antifungals after reading lots of web sites. I never actually took them because it's well known that fungi does not cause Crohn's.

Once again, thanks for taking the time to respond.

G.

 

[D Bergy]

I was diagnosed with moderate Crohn's. That was the GI's rating of the condition. I had a stricture that was surgically removed. I was flared pretty bad before and after surgery. I had an excellent surgeon and the GI was one of the best, and diagnosed me quickly.

The GI wanted me to go on Imuran, and I already knew how these drugs worked, but I wanted to know more about the disease before committing to a treatment. I am naturally skeptical about the medical profession, and treatments, from past experiences. In another words, I do not do anything unless it makes sense to me, and it is the best option I have.

I controlled my inflammation using some supplements I was already taking, but upped the dose. This helped some, but not a perfect solution. It just had to buy some time to dig into the disease.

Anyway, I do not buy the immune system going bonkers theory. Disease has causes, and they usually are pathogens. To me, using an immune suppressant to prevent symptoms, is much like putting tape over the engine warning light on a car. It may make you feel better for a while, but you might regret it later on. Sometimes, that is all you can do, but that was not my case.

I wanted a long term solution, that had minimal risk, and would not invite more disease down the road. I do not want Arthritis, Osteoporosis, and the host of other auto immune conditions that can accompany Crohn's. No one does, but in my estimation, suppressing the immune system is a risky proposition. I am not deriding anyone's treatment choice, because we only can use what works for us, but I did have another choice with LDN, so I tried it. My gastro would not prescribe, so I found a doctor that would.

I largely self treat, and I was not flared any longer by the time I had my LDN prescription. I no longer discuss my alternative treatments on this forum, because it is not an alternative treatment site, but a support site. It is too controversial and disruptive. I do not even know if I need LDN any longer. There is really no reason not to take it, so I will liely continue taking it, the rest of my life. It really has no downside, unless it does not work for you.

I will say that my treatments consists of going after the specific pathogens that are thought to be involved with Crohn's. I use a few different methods, but none of them approved, or conventional. I am happy with the results so far.

I do not think most people that take LDN are on any other Crohn's drugs. There are some that are, but they often drop the others once they get stable. It is usually a transitional thing. LDN is the only pharmaceutical product I take.

Immodium can work real well, but it is not designed as a long term treatment either, and long term use of most any drug, is going to have consequences. If you could get by without it, using LDN, that would be a real bonus. It is an opiate of sorts, and might not work with LDN.

I hope you can find something that works well for you. I do not like seeing anyone suffer with this disease.

Good luck to you.

Dan

 

[mizgarnet]

Like Dan I am not on any prescribed medicine or OTC. I only take natural supplements and of course, LDN (not prescribed). I did notice an improvement in the first week. I am in remission. The only prescribed drug I took was 6MP (to appease my family). It nearly killed me. I have always leaned toward the natural side of things. I really do not discuss often because I get tired of defending my beliefs.

L-glut heals the mucosa (sp?) lining of the intestines. ALA is a whoop you know what antioxidant. I am studying holistic medicine and holistic nutrition. The more I study and learn, the more I am agreeing with orthomolecular science. I chose the LDN route because of its quick action on "resetting" the immune system. I do think there needs to be support of the immune system during the treatment. I believe our immune systems are damaged and that we need to build them back up not destroy them.

Back to the accounting...
Wendy

 

[DMS]

My son has been on LDN since August 2009, he has been in remission for most of that time. He has not been on any drugs other that Cipro and Flagyl (for a fistula/abscess) he was on these drugs for 3 months before we started LDN. We saw results with the LDN within 4 weeks, but we were also following SCD and had started hyperbaric oxygen therapy at the same time.
Mitch starts to feel worse if we try to take out one of these things, tried adding in a few new foods - they didn't agree with him. Hyperbaric oxygen therapy was started specifically to help heal the fistula.

He did well with just the combo of SCD and LDN, but his CRP never came down to a normal range, and he still had urgency in the morning.
With the addition of HBOT it seems to kick him over to real remission, where he has no urgency, CRP is normal and he's got a great appetitie and energy.

In the past year and a half he has not taken a break from LDN.
Also, his LDN was compounded incorrectly last January (lactose was used as a filler) and he definitely was heading into a flare - CRP went up, urgency morning and night, and starting to get stomach pain and nausea again. Once we got that corrected he started feeling better within 2 weeks. Took a lot longer for the urgency to go away though.

So for us - LDN was not a miracle drug - but in combination with a few other things it's working great.

 

[g_1988]

Hi guys,

Thanks once again for your replies. I didn't have any luck getting LDN at my gastro appointment yesterday. The doctor told me that he'd never heard of naltrexone being used for Crohn's and was a bit confused as to why I wanted to try it over the medically proven, efficacious drugs that are already used for Crohn's. It was a flat out "no", but he did understand my wanting to try drugs that I find out about and was quite understanding. He offered to refer me to another gastroenterologist whom I can discuss this with, he also said that with this referral may also come the opportunity for me to be involved with actual medical trials of drugs so I'm looking forward to my chat with the next doctor, I believe he's a professor. He said I will probably get the same response from all the gastroenterologist on the trust, so I'm not hopeful. If I'm unable to obtain a prescription from him, I will try my GP. If that's not successful then it looks like naltrexone is not gonna happen for me.

Thanks again.

 

[DMS]

Sorry to hear that they won't let you try LDN, I really think it's too bad that the Dr's won't look into it and at least let you give it a shot, I can understand if you're in a flare and they want to get things under control - but to not even let you try it as a maintenance drug when you're doing well, like I say, it's too bad.

I don't know where you are but if you're in the US you could call Skip's Pharmacy and ask for a Dr. referral in your area from them, also, I believe there are Dr.'s that will do phone consults and prescribe LDN, Skip's can point you in the right direction for that also.

If you're interested in trials you might want to check this one out
http://www.osiris.com/clinical_prochymal_crohns.php

It's a stem cell trial that does not wipe out the immune system, and is done with stem cells from adult donors.
This is definitely one that I'm watching - although my son is doing too well to be a part of it (and he's too young still). I hope it will be available to all in a few years.
Good luck.

 

[hopeful]

If your doctor has not seen the published study on LDN, make sure to take it along with you.

I am not yet able to post links, but go to Google Scholar, and put in Crohn's LDN Zagon, and the paper will come up. On the right side you will see a link saying "pdf" and that will download the study.

Point is, its a very safe drug to try, and makes sense to give it a trial before some more toxic treatments.

If you want to find a doctor in your area there is a doctors directory on ldnscience.org under the link "find a doctor"


good luck

 

[crushingcrohns]

I have Boswalla caps and I didn't know they were that effective. I feel like im going into a flare, ya think I should take them? Also, what is wind-ez? Never heard of it.

 

[mizgarnet]

If you feel a flare coming on try a liquid diet for a few days. That works for me. Boswellia is wonderful. I take 1000mg a day and bump it up as needed. Hope it is not a flare.
Wendy

 

[crushingcrohns]

What does the ALA do. You are not the 1st to mention ALA with LDN? Also... FILLERS that the pharmacy use to compound the LDN, may be making you sick without knowing it. I just figured it out and found out the freaking filler is lactose.. LACTOSE???? Im allergic to lactose. I just wanted to mention that to you an ok filler is M. Cellulose:wink:

Hi G 1988:

I have been on LDN for a little over one year. My situation is a bit complicated in that I have been doing another treatment concurrently with LDN, so it is hard to determine which is/is not working, and what is actually happening. But long story short, I am not one of the people who have gone into remission within 3 mos of beginning LDN--though there are people who responded that quickly. However, I will not stop taking it for a variety of reasons. Why? Because I believe that everyone's disease triggers/mechanisms are different and thus treatments respond differently for different people. Some people respond within one month (as per a nurse who worked on the LDN/Crohns clinical trial at Penn State Hershey) others it takes up to 3 months or more. Also, just because I am not fully in remission does not mean that LDN is not working in other ways, especially preventitively (that is my opinion and some may not agree with me). And though it may not work 100% for my crohn's, it may help prevent me from getting worse or developing other diseases. I spoke to someone who works at Dr. Bihari's office (Dr. Bernard Bihari is the pioneer of LDN use) and he told me that everyone in the office takes LDN, not to treat any specific illness, but simply for prevention purposes--especially cancer prevention. So, I do not plan on stopping it.

So that being said, if you try LDN, be patient and give it time to work! I started off at 1.5 mgs for 2 weeks, then increased to 3 mgs for weeks and since then have been at 4.5 mgs. 4.5mgs is considered (generally) to be the optimal dose. I had very minro side effects like appetite suppression and vivid dreams, but that went away within a month. Hopefully, there will be more testing on this substance in the future that will work out the dosing. But for now, 4.5mgs is generally considered standard. However, should you reach 4.5 mgs and feel side effects that are unbearable that you did not feel at 3 mgs, you may consider taking the lower dose. If you are really concerned, you may want to get your LDN script written for .5mgs so that you can increase your dosage by .5 mgs and increase very slowly.

In addition to LDN, I have received intravenous Alphia Lipoic Acid treatment last May--I am currently still doing the treatment, only orally now. I do feel that my insides are SLOWLY changing--I was told by Dr. Berkson (who gave me the ALA treatment) that this is a slow working therapy and takes time. That being said, I feel different. But I do still have some minor bleeding and mucus and slight pain occassionally. But it is nowhere near where I had been. I am getting better very very very slightly everyday. My treatment regimine has taught me to be very patient.

Good luck to you. I hope LDN puts you into remission.

Christine

 

[Kev]

I've been on Low Dose Naltrexone since November of 2007. It took a while to kick in, but I stayed with it and it worked. The only side effect I had were some very livid dreams (actually, very enjoyable; I'm sorry they went away). LDN has continued to work for me during some VERY stressful events in my life. I do not see LDN as a cure, per se. I like to make a crude comparison that LDN can be to Crohns what insulin is to diabetes. A means to stop the progression of the disease. My GI was so impressed with my results on LDN that she has placed another 4 patients on it. All of us are doing well. She presented our case studies to a review of her peers/colleagues here locally. Of the reasons to consider LDN vs other traditional meds I think THE most important is the risk (or lack thereof) of potential side effects/complications compared to the other meds of choice. I've had my bloodwork monitored (currentlly down to every 6 months now) for any sign of complications from this drug. To date there has been absolutely no negative consequences or hint of complications; and since I'm into the start of year 5 on it, that is a pretty good track record. I'll throw out this caveat (actually several). LDN is not to be considered a 'get out of Crohns prison free card'. You have to eat sensibly, take into consideration you do have a chronic illness, that there is/and remains issues stemming from the amount of damage Crohns/IBD has done to your body, that LDN isn't invinceble i.e. that if you become deathly (OK, overstatement) ill from cold, flu, etc., it might mean a temporary flare of your underlying illness, and that LDN (the right type and formulated/compounded properly) is JUST a safe, effective treatment for Crohns. I recall when I first came to this site; when I was first diagnosed, of feeling desparate to find a 'cure' for the incurable. I didn't. But finding LDN has stopped/halted my Crohns in its tracks; and that will do for now until someone does come up with a cure (if it is safe).