Questions before I talk to my GI about LDN

[JDTM]

Alright people, I need your input!

I have a follow-up with my GI in about a month. I'm a mild case (for the moment), on Pentasa, currently tapering off steroids. I'm improving, but I'm not out of the woods yet -- today is kind of a crummy off-day, and although the medication I'm on seems to be working on the problems in my ileum, every stomach pain makes me wonder if other issues are/are not being addressed.

So, I figure I'm going to ask my doctor about trying LDN. I realize that this will be a bit tricky, so I plan to either contact her ahead of time with further info, or come armed with the Stanford clinical trials study. Not sure what she'll say, but FWIW, she seemed open to at least one other form of "alternative" therapy (specifically, elemental nutrition -- she only warned that it was hard to stick to, and that she unfortunately was unable to prescribe a nutrition drink that would work, which I think might be a common problem in the U.S.).

Before I do all of this, however, I'm wondering about your opinions of where LDN would fall on the spectrum of treatments for Crohn's. I realize that it works differently than the conventional medications, so I'm not sure where it lies. Would you consider LDN to be a first-line drug? Something that's appropriate for mild cases? Or do you think it's something to be tried only after other conventional medications have failed? Similarly, would this fall under a "maintenance" medication? Or would the patient simply be able to hop off the drug and take it again when needed, a la corticosteroids?

I have no problem staying on Pentasa either, and I plan on telling my gastroenterologist just that.

My rationale here is that while I've got the rest of my life to figure this stuff out, I can always try out other medications later if the LDN doesn't work for me. Not sure if she'll go for it, but the next step for me (Aza) seems like a fairly big jump. I'm not opposed to it, but I'd like to try something else first. The side-effect profile seems pretty promising as well. I'm also on the "mild" side of the disease, so it might be less risky for her to try it on me vs. someone who is developing serious complications.

Help me out here guys and gals!

 

[Jennifer]

I'm sorry I really don't know anything about it, I've only heard of it but nothing bad, just about people trying it. I see no harm in suggesting it to your GI and bringing all the information you have on it. I'm sure she'll want to research it more after your appointment and call you later (but maybe not, you never know). One thing you don't want is to go from a mild case to a more severe one so if something is working then why rock the boat but if its not and you think something else would be better than by all means, try out different treatment options till you find something that works. So I guess all I'm really doing is supporting your decision and bumping your thread. Let us know how the appointment goes.

 

[JDTM]

Well, I had the appointment today (bumped up because I had an episode of stomach pain last week), and I presented my doc with a letter arguing why LDN should be considered a possible next step along with a couple of published articles. I'm gonna wait to be contacted by her and see what she says. She seems hesitant, only because it's not "standard of care," but the articles might sway her. (She's also going to talk to another doctor at the practice about it -- good guy, good doc, but I know from here that he's not super into LDN either without the research to back it up.)

(Despite her hesitance, I would put her firmly in the "good" catergory of doctors, as she's very perceptive, concerned with how I'm doing, and in previous discussions she's been open to other forms of less-common treatment regimes if I wanted to go that route, e.g. enteral nutrition/LOFFLEX diet.)

Anyways, I'm just going to wait and see and do what I can in the meantime. I'm a mild case, and I think that my IBS is perhaps confusing the issue somewhat. My symptoms come and go, and I have good days and bad days... but on the other hand, certain symptoms that were definitively Crohn's (such as mucus in the stool) have been eliminated, which indicates (to me, at least) that the medications I'm already on are doing their job to at least some degree.

It's weird, and hard for me to be pushy, but I felt like I at least advocated for myself and I will make a stronger case for it if anything gets worse and something like Imuram is considered. However, we're not at that point yet -- Imuram is probably overkill if I'm improving.

Meanwhile, getting my stress under control will probably be a biiiiig help. I'll update if I hear anything back from the doctor regarding LDN in the meantime.