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Crohn's Disease Forum » Treatment » Low Dose Naltrexone » Discussing LDN with Doctors


12-08-2013, 04:17 AM   #1
Magnolia24
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Discussing LDN with Doctors

It seems like a lot of people on here are using LDN and having at least some success with it. I've read a bit about it and am feeling interested and hopeful.

I asked my GI about it at my last appointment, and he hadn't heard of it. That felt a little discouraging.

What were your experiences like talking to doctors about LDN? Were they familiar with it? Who prescribed it? Did it take convincing, or were they confident about it?

I've been on Entocort since my diagnosis last month, and it has been working well so far, but it is likely to continue to work for a year at the most...so I want to have as much information as I can and know my options when I need to make a change in my treatment.
12-08-2013, 07:43 AM   #2
Kev
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Hi Magnolia

I went to my doctor (GI) armed with a printout of the early 2007 Penn State study conducted by Dr Jill Smith. I had located a pharmacy in Ontario (Central Canada) although I live on the East coast... it was the closest, actually only pharmacy in Canada back then, which compounded it. I expected my GI to dismiss it outright. My fallback plan was to then try my GP. if both those approaches failed, I had the number of a doctor in the US who would perform a consult over the phone, and was known to prescribe it. My only concern was whether or not, once prescribed, I could get it shipped in through customs. It never came to that. My GP took the material, and agreed to at least look into it. We met again after that, and I was prepared for a no. But, to my everlasting gratitude she agreed. Everything else had failed miserably, I was in desperate condition, and the last 'standard' medicine (AZA) had landed me in the hospital when I went toxic on it. And, as she put it... it couldn't do me any harm, and it might just work. Afterall, it is such a low dose. That was late in 2007. Over 6 years ago. I shudder to think what may have become of me IF my doctor hadn't taken a chance on LDN way back then.
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12-08-2013, 04:45 PM   #3
superzeeman
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I approached my GI about six months ago as she was talking about Humira, Remicade, and so forth I mentioned LDN and the good results that I have been hearing about. She immediately dismissed it and said it didn't have clinical proof that it worked. So she put me on methotrexate and that was the end of the conversation. So I decided to find a doctor that would prescribe it and I found a doc that is a known for trying unique angles to medicine. I went to see him and he agreed to prescribe it and says he has had great results doing so. I am now on it and doing fine. time will tell though.
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12-17-2013, 12:51 PM   #4
akduck
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Magnolia, I asked my GI first, and he said no. Said the studies were to small to prove anything and actually said it was illegal for him to prescribe it! then asked my primary care, a NP I see when I can't get in with PC, both said no. Then I got the names of 2 Drs. about 175 miles away who do prescribe it! (I live in Alaska, small town) I called and asked if they prescribed LDN. Made an appt with one who said yes, and got the script! The doc is wonderful, is an MD who believes in alternative meds in addition to traditional meds when warranted. I am 2 1/2 months into LDN treatment, and doing great! I still have to watch what I eat. the alternative med Dr. did some testing, found I am allergic to wheat! Cutting that out has made a tremendous improvement - my GI had me on a low res / low fiber diet, and I ate a lot of wheat. I have lost 15 lbs, and feel better, sleep better and have more energy.
Good luck with whatever treatment you decide on.
12-19-2013, 04:19 PM   #5
Magnolia24
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Thank you for your responses, and glad to hear that LDN has been working for you!

All of you describe needing to, or anticipating needing to discuss it with multiple practitioners, or seek out someone known to prescribe it. What about LDN made you feel determined to fight to get on it? How did you feel so certain it was the right drug when many doctors are not convinced by the limited clinical trials?

What else do you do to stay healthy? Are you taking any other meds along with LDN? Akduck, you mentioned you cut out wheat. Kev and superzeeman, what kind of diet have you eaten while taking LDN?

Thank you again for sharing your stories! So helpful!
12-19-2013, 07:19 PM   #6
Kev
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OK, one of the 'big' motivators for me were the 'side effects' that standard IBD meds came with. I had just come from a nightmare experience with AZA (Azathioprine, Imuran). Now, the doctor had spelled out the possible side effects, and I had gone online and looked at the numbers. My initial take on it was that, since the numbers were relatively so low, the odds of any of those nasty side effects actually impacting me seemed rare... remote. Besides, we took all the precautions... bloodwork, low starting dose.. ramping up to an effective dose. Well, despite the numbers (the 'odds' if you will) and the precautions, I was nailed by side effects. Crippling pain (couldn't walk or stand) and a rash covering most of my body. that resulted in a trip to the ER. The doctors there took me off the drug... pain went away within 2 days. Then my GI tried one more test dose. Pain came back with a vengeance. Case closed. Or, at least, I had to stay off that drug forever. That 'toxic' episode meant we had to watch out for issues related to my toxic incident... they came. Two (not one, but two) close calls with related types of cancer. Caught them in time (very vigilant doctors). Anyway, the thing is... thanks to my diagnosis, my kids stand a X fold increased risk of having it, developing it. So, to me, it seemed like a no-brainer. It might not do me any good, but I'd be willing to play lab rat on the off chance it would work... and this would get the ball rolling to make doctors more aware, make it more 'accepted'... so, that should the day ever arise that my kids NEEDED a safe (r) drug to take... it wouldn't be an uphill battle, people would have heard about LDN. You see? Like, if it didn't work on me, well, I was going downhill rapidly anyway... I was literally out of options. If it did work, then not only do I save myself, but I pave the way for my kids, or someone elses... Oh, and the occasional adult too. I'm not prejudiced. ;-) I don't have any stake in LDN other than it saved my life, and I feel that it deserves consideration. (Yeah, so don't hold it against LDN that it saved this windbag)
12-27-2013, 02:37 PM   #7
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My consultant has seriously fallen out with me for trying ldn. He sent a pretty horrible letter to my gp, very derogatory about me, and he has previously tried to get he doc who prescribed me ldn struck off. I am disgusted with him.

My latest faecal calprotectin is lower than on 50mg of steroids.
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12-27-2013, 04:45 PM   #8
Kev
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I wonder if this 'doctor' (calling him a quack would be an insult to ducks) would be so dead set against it if he had this disease. Absolutely incredible that this physician totally fails to place himself in our shoes. Or even put the patient's well being ahead of his own.
12-28-2013, 02:30 PM   #9
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My First GI said no too.. So I drove 3 hrs to a Doctor I knew would prescribe. Way I found them was I found the closest compounding agency from the LDN website and asked them to recommend someone.
01-30-2014, 04:28 PM   #10
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I brought it up over the phone with my GI. We have an interesting relationship - I am a very compliant patient, but I have to be convinced first (and I've got a Ph.D in medical sciences, so I do my research). It usually takes a few visits with a GI before they realize that they can't just tell me what to do...I try to pick doctors that have a hand in research, as they tend to be more accepting of pain-in-the-butt patients like me. So, my GI and I have a good, and very open, doctor-patient relationship.

Anyway. I asked about LDN during a phone call. "Well, what do you know about it?" "Well, the research is promising, but very preliminary." "That's right...why don't we max-out your current meds first, then we'll talk about LDN." "Okay, I can't argue with your logic."

So, we maxed out my meds (Remicade, I had failed Humira (or it failed me) years ago), it didn't help, and he wrote my script. This guy is head of the IBD group at a major medical center (so I was kind of shocked he'd be agreeable to it). I'm the first patient he's written an LDN script for, though another doctor in the group has prescribed it with good results (which is why I asked - I was assuming he'd pass me along to that guy). I've been on LDN for about 7 months now and am doing very well.

I would say, though, I don't think he'd be willing to prescribe LDN to someone who has yet to try the conventional therapies - I was (am) at the end of that rope.
01-30-2014, 06:19 PM   #11
Kev
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I understand a reluctance to... gamble (????)... on non traditional therapies. Makes sense to take the 'safe' route. BUT... these so called safe routes... traditional medications.. are not so safe if you look at potential side effects. So, it becomes a question of managing or balancing the perils... the risks involved in trying something cutting edge like LDN, or the 'accepted' risks of whatever your doctor is 'used' to prescribing. My way of thinking, it seems ... 'logical'... (in a Kev crazy sort of way) to take the 'gamble' on the new drug with low impact side effects. I mean, I've been taking them since 2007, and there is the post of that Norwegian documentary where doctors there and in Ireland have used it for over a decade. Naltrexone is NOT an 'experimental' drug, and the use of low doses of it just seems to be a win/win proposition. I'm no psychic, but it would seem that once it has gained acceptance... it will be the defacto medication of choice doctors will prescribe.
01-31-2014, 02:10 PM   #12
lsgs
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I wonder if this 'doctor' (calling him a quack would be an insult to ducks) would be so dead set against it if he had this disease. Absolutely incredible that this physician totally fails to place himself in our shoes. Or even put the patient's well being ahead of his own.
My GI has lodged a complaint about my LDN doc and got him banned from prescribing, cutting my supply of a drug that makes me feel better off. He fabricated a story saying I was 'recruited' for his private clinic which didn't happen at all, I made the contact with him. Luckily I have been able to source it online from a reputable pharmacy and haven't felt the ill effects from being off it for a week yet. How disgraceful is that though? I am done with doctors and their egos.
01-31-2014, 04:25 PM   #13
LandShark
 
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I understand a reluctance to... gamble (????)... on non traditional therapies. Makes sense to take the 'safe' route. BUT... these so called safe routes... traditional medications.. are not so safe if you look at potential side effects. So, it becomes a question of managing or balancing the perils... the risks involved in trying something cutting edge like LDN, or the 'accepted' risks of whatever your doctor is 'used' to prescribing.
Oh, I absolutely see your point. I started with the "safe" therapies (which landed me in the hospital with a freak allergic response - thanks, Asacol!), and progressed as they either didn't work or stopped working. Back when I was diagnosed, I never thought I'd be willing to take MTX or a biologic (I've been on both).

Doctors have a hard time pushing new therapies, especially when they only have pilot studies and anecdotal evidence to go on. As a scientist, I get it. But as a patient I see your side, too. If I knew about LDN a decade ago, I think I would have pushed for a trial, if only because it has such a good safety profile (I do, after-all, give most things with interesting pilot data a go (probiotics, enteric-coated fish oil, VitD, curcumin, etc)).
02-02-2014, 08:42 PM   #14
Kev
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You know... saying no to a patient... not taking a chance on LDN... OK, I understand why a doctor would be reluctant... Lawsuits can be nasty. But to intercede and interfere when another takes that chance (and prescribing it is perfectly legal).... what a lowlife!!!
02-06-2014, 02:57 AM   #15
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You know... saying no to a patient... not taking a chance on LDN... OK, I understand why a doctor would be reluctant... Lawsuits can be nasty. But to intercede and interfere when another takes that chance (and prescribing it is perfectly legal).... what a lowlife!!!
Hey Kev, I know that you were able to get some ldn and it seems to work for many people, I also see you're in Halifax, I'm in Moncton, I'm wondering is you have any advice to how I could convince my Gastroenterologist or family doctor to have me try ldn? I have only been diagnosed since October 2013, and have only been on pred and recently (past 2 weeks) on Humira second dose was 2 days ago. I am not thrilled with taking these harsh drugs, especially since there appears to be a increased risk in a rare type of lymphoma that predominately affects male teens and young adults when mixing pred and humira.

I don't think my Gastroenterologist will be up for it since she was quick to suggest conventional drugs and seems reluctant to try new things. She actually told me that diet has no effect on Crohn's whatsoever and that I should not change any of my eating habits, what a joke! I can just tell by dealing with her twice that she thinks she knows it all and probably wouldn't even be open to trying it. I may have a chance with my family doctor, but if that fails do you have any advice, or know of any doctors preferably in Moncton, or how I would go about finding one relatively close who would at least be open to trying it?
02-06-2014, 06:34 PM   #16
Kev
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Well, you could arm yourself with the info... on the 2 trials on adults and the 3rd paediatric. However, you seem convinced she won't be open to trying it... Now, you may be right. Never know until you approach her. I'm not familiar with Humira, I'm no doctor, so the risks of coming off it to try something else... you need expert advice in that area.

Any doctor can prescribe it... finding one that will isn't easy. Finding one that will AFTER a specialist in the field vetoes the idea???? I don't think that will be easy in the least.

Find the nearest compounding pharmacy that makes LDN. Ask who the prescribing doc is
02-08-2014, 11:55 AM   #17
superzeeman
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I had my first GI appointment the other day in about 6 months. I told her that I stopped the methotrexate and started LDN instead. I told her that I have looked at the studies and the evidence that it does work and am convinced that it will help me. She agreed that I could stay on it as long as I consider more mainstream meds. She says its not hurting anything. So anyway, she wants to do a colonoscopy to look at things to get a baseline. Maybe she is curious if it is working.
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