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04-03-2013, 11:34 PM   #1
acc929
 
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Questions about LDN - very interested!

Hi everyone!

So, in a couple weeks I am going in to get my second resection. My last one was 10 years ago, and I've got about a foot of stricturing and active disease around the site of the last anastomosis. I'm on board with the resection since I believe my symptoms come from scarring rather than active inflammation based on what I know. That said, I think that part of the reason I didn't maintain remission longer was my young and foolish decision to go off my meds when I went to uni. Therefore, I'm considering what maintenance drugs I want to use after my resection. I'm not sure that Asacol ever did much for me, and I'd like to try to avoid immunosuppressants! Avoiding 6mp back in 2002 in pediatric crohn's was a bit more difficult than it seems to be now!

As you've seen, I'm interested in LDN as a maintenance drug. Anecdotally, it seems like a lot of patients even with aggressive disease have found a lot of relief from LDN, which is great since it seems so low-tox. I've never done Humira or Remicade, but at 22 I figure I have a lot of Crohn's ahead of me. What with antibody development and the like, I'd like to keep these meds on the table as long as possible, not to mention I like my immune system...(except in my ileum).

I've had a lot of trouble finding a doc in the Northeast who knows what LDN *is*/will talk to me about it. They are all very gung-ho on biologics. I get that these meds work, but I'm sort of freaked out that no one will dialogue with me about this. Did anyone here have the same experience? Also, those who have had success, how did your disease manifest beforehand? Does LDN seem a reasonable option for a maintenance therapy (with close monitoring of course)? Your experiences with this medication (and the quest involved in *getting* the stuff) would be very much appreciated. Not being heard by any doctors is starting to get frustrating - why is everyone so excited to pump a 22 year old full of immunosuppressants? I want to travel, darn it!
Thanks all. xx
04-03-2013, 11:50 PM   #2
rollinstone
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Hey, I'm not on LDN myself but I'm gonna tag Kev and Ctrl Z to name a few, they're both on it and doing well from what I know so hopefully they can chime in. I wanted to go on LDN aswell but I'm in aus and although my GI had heard of it he wanted me on imuran so now I'm
Almost on 2 months on that, I was reluctant at first but glad I started it, only downer is the nausea that comes with it from time to time
04-04-2013, 12:00 AM   #3
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Too bad! Hopefully your GI comes around if you still want to try it Yeah I feel like I sort of remember being on 6MP? Not well, though. I think I tolerated it all right, I don't remember any major issues when I used it as maintenance before, but when you're a teen and the 'rents are doctors, no one really sits you down to talk about how your liver looks and all that :P. I'm open to trying it again, but I feel like it would be really nice to see if this would help, too. Any combo therapies people are trying with LDN (don't know if one can really do this but...) and experiences with that are also of great interest
04-04-2013, 03:47 AM   #4
Kev
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Hi there. I think, in a perfect world, LDN will become the 1st choice for treating any IBD (it actually may become the 1st choice for treating a variety of diseases when approved).

I have been on it since Nov, 2007. I got off to a rocky start (pred withdrawal at the time) but when it kicked in, all of my troubles were over... except for the accumulated scar tissue I have (I posted photos of the scar tissue somewhere on this Forum.. they aren't for the squeamish... and I don't remember exactly where.. but look around, they'll give you a good idea of what LDN can/can't do). If you are getting a resection (been there too) and your current scar tissue is being removed... well, I for one think that LDN will give you your pre-disease life back. Like I said, LDN can't make scar tissue go away, but.. if you are amongst the 89% or so it works on... and why shouldn't you be, it will stop the disease. So, disease stopped, scar tissue cut out... everything else then should be 'normal'. And, like you said.. a very low tox option. A perfect maintenance drug. I've heard (anaecdotally.. so it might be an exaggeration) that some researchers were so impressed by LDN they began taking it as an all round preventative drug even tho they didn't have any active diseases for it to contend with. Seems very high praise.

The big hurdle.. finding a doctor to prescribe it. The lowdosenaltrexone.org forum (I think that is their website) provided a list of US doctors who will consult over the phone. I never had to resort to that. I think it would be easier to get a list of any close or local pharmacies who compound it, and find out from them who is prescribing it. Then go see one of those doctors... any GP can prescribe it. It doesn't need to be a specialist. I think that covers anything I can offer... except for this last bit. My sons are both older than you. One of my primary reasons for playing lab rat way back when was that I was concerned.. with the genetic risk factor.. one of them would get it. So far (thankfully) it was a needless worry. But, if it ever came about, then I know that my first recommendation to them would be to get their hands on LDN.. and if they couldn't, I would give them mine. That is how strongly I believe in it. hope that helps you choose.
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04-04-2013, 07:36 AM   #5
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Hi Kev. Thanks for your detailed reply! I didn't find a directory at lowdosenaltrexone.org, just a list of a few compounding pharmacies. Are pharmacies allowed to tell you which docs prescribe a certain medication? I really hope someone very legit around here (Boston) is willing/able - because my parents are doctors I feel that they are a bit 'conventional' in how they look at my treatment, and so getting them on board also holds some potential for difficulty... Funny because they were singing a very different tune about my going on Remicade a couple years ago... -_-
04-04-2013, 09:39 AM   #6
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Hey bud -- greetings from your neighbor to the south (Providence)! The thing about LDN is that it's not "standard of care" yet when it comes to IBD treatment, and while it's becoming more of a known treatment in the medical community, there are those who are reluctant to try it over a more "proven" method, regardless of side-effects and what have you. That said, arming yourself with a published study or two might carry some weight. I took some materials in to my GI, who was reluctant at first, but when she was given the time to look it over and discuss it with her colleagues, she agreed to it. THAT SAID, I am considered a mild case, and I was in a pretty good place when I first started it, so that probably had a big effect on her decision to give me the green light. If your case is more severe or if you're flaring, you might be met with more resistance. (I think Kev had a pretty severe case from what he's described on the forum, but it also sounds like he hit the GI lotto in terms of open-minded doctors.)

Keep us posted on how you progress. As Kev said previously, GPs are also an option in terms of getting a prescription, and if you do go with LDN, try to choose a reputable compounding pharmacy (I go with Skip's in Florida, personally). The only other bit of advice I would offer is to keep your GI in the loop.

I wish you the best of luck on your resection! Hit us up if you have more questions. :)
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Hi, I'm Jesse!

Current meds:
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Previous meds:
Dexilant (too pricey!), Xifaxan (short course), budesonide (tapered off), Pentasa (had to switch in January 2016), omeprazole

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04-04-2013, 02:48 PM   #7
Jmrogers4
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My son has been on LDN for over 9 months now and was considered to have severe Crohn's located from stomach all the way through. Although he was in a good place when we started LDN, had been on Imuran for several years and was probably 90-95%. The LDN takes a while to work - personally I think it takes a while for healing to happen. Jack had scopes again at the beginning of February and it was healthy tissue - no active signs of Crohn's disease. His GI (and we were lucky as he was the one to suggest LDN) was shocked as his other patients he had put it on were not doing as well. What's the difference - maybe compounding, maybe it just didn't work for them. He was at the point of saying based on his other patients that LDN doesn't work but I think Jack has changed his mind on that and he would not be adverse to prescribing again.

I can certainly understand being young and thinking you are going to be dealing with Crohn's for a long time. Which is one of the reasons we said yes, let's try it with the LDN. We figured he is only 13, he will be taking medications for the rest of his life for this.

He is growing now and gaining weight and acting like any other 13 (nearly 14) year old boy with both the good and bad (attitude). His teachers have even noticed and commented on how he must be feeling so much better as one was even a little excited she had to tell him to calm down in class and she hadn't had to do that in well over a year. Not that he is a disruptive kid but he does like to talk

Good luck with your resection
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04-05-2013, 01:43 PM   #8
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Thanks everyone for the information you've given. I've started calling a few compounding pharmacies in the area, but it's difficult to find a GI amongst the doctors prescribing this stuff. I might try to go through my GP or something. For days I've been puttering along only thinking up until the surgery but now the medical options afterwards have got me jumping out of my skin a little bit. I know that immunosuppressants have become the standard of care for Crohn's, and it sounds as if they aren't as dangerous as they were thought to be a few years ago, I just am so scared of the idea of such serious medication so early in my life . Does anyone have any information on how LDN actually works on the immune system? Its being an opioid antagonist and having a positive effect on crohn's doesn't make much sense to me, but then I was never much for science. Also, my old GI in Toronto (kind of a jerk) told me that the studies on LDN were 'bogus.' Is there any dispute over the legitimacy of the trials? I was under the impression that they were pretty legit. Sorry for more questions, and thanks again to you all
04-05-2013, 01:52 PM   #9
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I'm not sure where it is on the forum, but I read that a big pharmaceutical company purchased use-patents for LDN in a handful of various ailments; I'm not sure if Crohn's was among them (yet), but from what I remember reading, Phase III clinical trials (the big ones before a drug goes to market) were on the horizon. Say what you will about the evils of "big pharma," but if they're throwing funding at it, I'm less likely to think of LDN as being bogus. That's my two cents, anyways. :)
04-05-2013, 02:04 PM   #10
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That makes me feel a heck of a lot better actually. I did not know they were going into Phase IIIs. For a minute there I was getting defeatist when I couldn't seem to find a GI in Boston writing scripts for it. The hunt continues I guess!
04-05-2013, 02:10 PM   #11
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Yep -- here's the link to the story:

http://finance.yahoo.com/news/tni-bi...151700773.html

Hat tip to David for bringing this story to our attention in the first place. Good luck with your search!
04-05-2013, 02:10 PM   #12
Jmrogers4
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TNI Biotech purchased the orphan patent rights. Here is the link to the post about it
http://www.crohnsforum.com/showthread.php?t=45577

Here is a link to the company and page about LDN
http://www.tnibiotech.com/investor-r...rch-foundation

Must have been typing/researching at the same time Jesse, you beat me to it.
04-05-2013, 02:11 PM   #13
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Jacqui -- great minds think alike!
04-05-2013, 03:30 PM   #14
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Thanks guys! Showed these to the MD parents too, they seemed impressed .
04-05-2013, 03:42 PM   #15
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Wait!!! Jacqui your second link was also amazingly helpful!!! A few months after his last chemo treatment and clean PET scan, my father's pancreatic cancer markers are back up and he has a scan next week. I just showed him the article about OGF in use with pancreatic cancer patients and he just lit up. He's going to bring it up with his oncologist. We'll be getting the whole family on LDN before you know it! I'm not religious but bless you for posting that link - otherwise I might never have seen it and looked into it more What a promising-looking drug in so many ways!
04-07-2013, 01:05 PM   #16
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Not being heard by any doctors is starting to get frustrating - why is everyone so excited to pump a 22 year old full of immunosuppressants?
Thanks all. xx
Good docs aren't exited at all with pumping people full of aza. The best GI I ever had told me his goal with all his patients is to try the least invasive drugs. He was also the doc who suggested to phase out aza after having been on them from age 22 to 27. Ultimately only worked for a year or so, but hey it was worth a try.

I am well aware of the potential negative effects of aza, but I take them over active Crohn and the side effects of biologics any time.

Re LDN, I am sceptical about anything that hasn't got a secure long term track record. But I am in remission with Aza, sport, good diet etc., so also no need to change (never change horss in mid stream as Lincoln said...).
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04-07-2013, 03:53 PM   #17
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Thanks for your input, Alex. After hearing that LDN is in Phase III clinical trials for Crohn's, I think it's safe to say that it's a viable option for the treatment of this illness. It's also been used in much higher dosages in different conditions for a long time, and it seems that it's a generally safer drug than many immunosuppressants in the long term (the ones that concern me the most are the TNF-a inhibitors, not so much the 6MP, though I'm not so jazzed on that either). I'd like to try that before I go back on 6MP. I was on 6MP for years and ended up needing surgery anyway. Hard to say if it would work better for me in the future; it's also hard to know if it was the 6MP or the Entocort/Asacol combo that was really maintaining my remission. Glad it's working for you!
04-07-2013, 04:30 PM   #18
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Email Crystal Nason who keeps a database of doctors who use and prescribe LDN.
She will point you to an LDN doctor close to you. [email protected]
Make sure to tell where you are from, state, country etc so the right list can be sent.
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04-07-2013, 04:35 PM   #19
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If you look for a MD who works in integrative medicine or complementary medicine, I'll bet you can find someone who would prescribe it. That's what we did. Once it was prescribed, the GI doctor seemed fine with it.... My son is on entocort and LDN and is doing reasonably well, not complete remission but certainly stable; CRP still mildly elevated, but much lower than at presentation.
04-07-2013, 04:35 PM   #20
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Thanks for your input, Alex. After hearing that LDN is in Phase III clinical trials for Crohn's, I think it's safe to say that it's a viable option for the treatment of this illness. It's also been used in much higher dosages in different conditions for a long time, and it seems that it's a generally safer drug than many immunosuppressants in the long term (the ones that concern me the most are the TNF-a inhibitors, not so much the 6MP, though I'm not so jazzed on that either). I'd like to try that before I go back on 6MP. I was on 6MP for years and ended up needing surgery anyway. Hard to say if it would work better for me in the future; it's also hard to know if it was the 6MP or the Entocort/Asacol combo that was really maintaining my remission. Glad it's working for you!
I am not saying aza is a drug with no potential side effects. Quite on the contrary, that's why I tried to phase it out in the past.

But LDN therapy hasn't been proven to work long term. Still, I need to look into it a bit more myself. As I am feeling quite good right now it might even make sense to phase out aza and try LDN. The problems with LDN I have read about are that it can loose its effect as early as 12 months nto treatment. And then it would mean back to aza, or not?
04-07-2013, 04:35 PM   #21
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Thank you superzeeman! I emailed her a few days ago actually and she was very helpful
04-07-2013, 04:37 PM   #22
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Alex, I'm not sure. I haven't heard anything about this regarding LDN. Some people on here have been on it for quite a while longer than a year and seem to have had good experiences to this point. Of course it still needs more testing and stuff, but I think that if you feel good enough to try it, why not? I know it's a risk, but after my surgery I've got a clean slate and there's no better time for me to try a new maintenance drug. If I get a scope 6 months in and there's an issue, then I'll see what to do about it drug-wise when it happens. Until then I've got my fingers crossed that I get a stroke of luck.
04-07-2013, 04:48 PM   #23
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Acc, I hope it works well for you. It would definitely be a viable third option for long term treatment. I am looking forward to the results from the Phase III tria, if TNI gets approval from the FDA to go for itl
04-08-2013, 01:03 PM   #24
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Alex_Chris, I know Kev has been on it for a long time, well over 5 years and it has continued to work. LittleChloe's daughter has been on it for over year and is doing fantastic. My son has not reached the year mark yet (July 1) but is doing fantastic. Had scopes beginning of February and it showed healthy tissue, no active Crohn's.
I think because of only a few trials and no long term at that, information is hard to come by and it is mostly from word of mouth experience like on here.
I certainly hope Phase III trials start soon and more information becomes available.
04-08-2013, 09:19 PM   #25
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Chloe has been on Ldn for 18 months and she just gets better and better all the time. We have an occasional set back but they are less severe and further between. Actually for Chloe at 12 months with Ldn was when she really started to make leaps of improvement.
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04-24-2013, 10:19 AM   #26
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I just thought I'd post to those that are wondering about long term use of LDN. I've been on it at 4.5 mg since 2002 for MS so that is about 11 years now. I"d say that is pretty long term. Someone also posted the e-mail address for Crystal. I have her same list as we started it roughly the same time in the same group. I was hesitant to post my e-mail address as I thought it was not allowed here but since I see that it seemed to be allowed I will post it. I see that there are several docs in MA and at least one in the Boston area on the list that are prescribing it. I always say, check with any of your GP's or any doc that you see on a regular basis. With enough info they should be wise enough to see that this is a viable option. If they are not, time to fire them and get one that is? Sorry...just my take. Anyway, feel free to write to me and I will give you names and phone numbers. Just don't want to post this info on any boards. [email protected]
Good luck to all and hey, it is time for all of us to take back our health and give us more control.
04-24-2013, 10:29 AM   #27
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Resection completed on Monday and all went smoothly! Just ate some eggs and a bit of gluten-free toast - it's gonna take a while to get over my fear of food, but even post-op eating felt better than it did before! I'm going to talk to a doc about going on LDN very soon. Does anyone have any insight as to when one should start it post-op? Likely only after I'm off pain meds. Does anyone have any pain management meds that work with LDN - even antispasmodics? Any thoughts on taking the LDN with Pentasa or do people here just do LDN and no combo? Thanks for all the help and suggestions so far
04-24-2013, 11:27 AM   #28
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As far as I know the only thing that LDN cannot be taken with is a narcotic. If your meds contain no narcotics they should be fine.
04-24-2013, 11:30 AM   #29
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Yes I've heard that as well. I'd be curious as to whether LDN would just make narcotics ineffective or if they make them actually harmful.
04-24-2013, 12:40 PM   #30
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No problem combining with Pentasa, my son did. I believe it doesn't work with opiate painkillers as the naltrexone binds to your opiate receptors making the narcotic ineffective.
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