I started LDN for Crohn's colitis five weeks ago, starting at 1ml liquid and gradually got up to 3ml a week ago. The past few days I have been experiencing worsening diarrhea, particularly during the night (a few hours after I have taken my LDN). Has anyone else experienced this when starting LDN? Do you sometimes get worse before you get better? My GI is not in favour of LDN which makes it harder to stick with it. I have been up practically all night the past three nights and having to drag myself into work. Not good and I don't want to take immodium all the time. If anyone can offer any thoughts, I would be very grateful.
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LDN and diarrhea
- Thread starter asheena
- Start date
Angrybird
Moderator
- Location
- Hertfordshire
Hello and welcome to the forum 
I do not have any experience myself with LDN but we have a sub forum dedicated to it that is worth having a look at: http://www.crohnsforum.com/forumdisplay.php?f=32. Out of interest have you been on any other med previously? What would your doc prefer you try over LDN? Also even if it tempting try not to use the imodium if you can help it, I have seen mention here that it's not always great for a bowel already compromised by a disease like crohn's.
I will be keeping fingers crossed that you can be feeling better soon.
AB
xx
I do not have any experience myself with LDN but we have a sub forum dedicated to it that is worth having a look at: http://www.crohnsforum.com/forumdisplay.php?f=32. Out of interest have you been on any other med previously? What would your doc prefer you try over LDN? Also even if it tempting try not to use the imodium if you can help it, I have seen mention here that it's not always great for a bowel already compromised by a disease like crohn's.
I will be keeping fingers crossed that you can be feeling better soon.
AB
xx
Kev
Senior Member
- Location
- Halifax, NS, Canada
Couple of questions... where did you get the liquid LDN? Is it homemade? If so, was the water it was disolved in sterile? How long was it around, and where/how was it stored?
I've never had any issue with LDN (4.5 mg capsule compounded at a local pharmacy) and diarrhea. In fact, just the opposite. Prior to starting LDN, it wasn't uncommon for me to have in excess of 20+ bouts of it per day, and to spend approx. 8 - 10 hrs a day inside a bathroom.
As for the gradual ramp-up approach, I've never read of it being used in the clinical trials. I understand some folks are leery of any medication, and the effects it might have on them, but 4.5 mg of Naltrexone is a comparatively very small dose, and since that seems to be the 'magic' dosage which triggers the rebound effect, my advice to anyone would be to aim/start at that dosage; and only adjust it (in consultation with doctors) IF there are adverse side effects.
I've never had any issue with LDN (4.5 mg capsule compounded at a local pharmacy) and diarrhea. In fact, just the opposite. Prior to starting LDN, it wasn't uncommon for me to have in excess of 20+ bouts of it per day, and to spend approx. 8 - 10 hrs a day inside a bathroom.
As for the gradual ramp-up approach, I've never read of it being used in the clinical trials. I understand some folks are leery of any medication, and the effects it might have on them, but 4.5 mg of Naltrexone is a comparatively very small dose, and since that seems to be the 'magic' dosage which triggers the rebound effect, my advice to anyone would be to aim/start at that dosage; and only adjust it (in consultation with doctors) IF there are adverse side effects.
Thanks so much for your replies. Angrybird, I am on Pentasa, having been trying to follow aspects of SCD diet and my GI wants to put me on Azathioprine. He is not keen on me trying LDN as he says it is very experimental and is unconvinced of its effectiveness. I have resisted AZA at the moment to see if the LDN worked, along with the Pentasa. I was diagnosed last December and was coping fairly well on Pentasa and the diet until I was put on iron pills in June which caused a flare. I notice you are on 6-MP which is similar to AZA. Do you find that an ok med to take? Glad you are feeling good and congratulations on your pregnancy!
Kev, I got the LDN liquid from a reputable compounding pharmacy so no worries there. I store it in the fridge. I was a bit wary when starting the LDN because of my consultant's very negative view and decided to go up gradually and this was agreed with the doc I spoke to from LDN international. The incrreased D may just be a hiccup - hopefully. I'm glad it worked for you and take heart from this. Thanks again.
Kev, I got the LDN liquid from a reputable compounding pharmacy so no worries there. I store it in the fridge. I was a bit wary when starting the LDN because of my consultant's very negative view and decided to go up gradually and this was agreed with the doc I spoke to from LDN international. The incrreased D may just be a hiccup - hopefully. I'm glad it worked for you and take heart from this. Thanks again.
Angrybird
Moderator
- Location
- Hertfordshire
Yeah I am doing very well on the 6mp - just one and a half tablets a day! In the world of this med 75mg it is quite a small dose but seems to work for people with crohn's. Have to have regular bloods done which can get tricky at times but that is the case for most meds used for IBD. I have been on the Aza myself twice before and whist it has always done wonders for my tum it gave me issues in other areas.
I've been taking LDN for a little under a month and have not experienced any terribly loose stools. Just mildly loose in the first week for like 2 days. Since then, things have been textbook normal like they usually are for me.
I wonder if you may have a Candida overgrowth. S. Boullardi would get rid of that for sure. Or it could just be that the LDN is taking care of something in your system and it is causing diarrhea. That's pretty much the thinking I had when it happened to me those 2 days. If it persists, perhaps you could try a stool bulking agent like psyllium .
I wonder if you may have a Candida overgrowth. S. Boullardi would get rid of that for sure. Or it could just be that the LDN is taking care of something in your system and it is causing diarrhea. That's pretty much the thinking I had when it happened to me those 2 days. If it persists, perhaps you could try a stool bulking agent like psyllium .
Kev
Senior Member
- Location
- Halifax, NS, Canada
asheena
Glad to hear it is from a reputable source. If you will indulge me asking another question that is none of my business, why did you opt for it in liquid form? The reason that I ask is that my experience with LDN is... once it starts working (although the point raised about the candida is worth looking into) it has been rock solid in results for me... unless the pills are old. At first, pharmacists I spoke with at both locations that compound it here were of the opinion that it had a shelf life of a year. I disagreed, and insisted on pills being less than 100 days old. At first they hemmed/hawed, then both competing pharmacies dropped their earlier estimates to 6 months... and most recently down to 3. Guess I wasn't the only LDN patient who experienced it loosing some of its "oomth" by the end of 3 months. I've heard (but it is only anecdotal) that the liquid form is only good for 1 month. Maybe you've heard that too, or something along those lines. I have also heard that Skips offers all of their LDN (pill or otherwise) in only 30 day old batches. That leads me to suspect strongly that age is definitely a potential achilles heal with LDN yet few people are aware of it. Another point, tho I am reluctant to bring it up, is that... in my personal experience starting LDN, I definitely felt worse in the beginning. It may be that some folks will also feel worse before things turn around; or it may be that in my case I was undergoing pred withdrawal when I started on LDN, and those early bad days may have had more to do with coming off pred than starting up on LDN. Just a bit of conjecture; but I believe others have reported similar... things got worse before the LDN kicked in. And in your case, especially with the small initial doses, I wonder if LDN kicking in may be delayed. For whatever reason, taking too much or too little seems to impede the arrival of that ... "eureka" .. moment. You know what I mean?
Glad to hear it is from a reputable source. If you will indulge me asking another question that is none of my business, why did you opt for it in liquid form? The reason that I ask is that my experience with LDN is... once it starts working (although the point raised about the candida is worth looking into) it has been rock solid in results for me... unless the pills are old. At first, pharmacists I spoke with at both locations that compound it here were of the opinion that it had a shelf life of a year. I disagreed, and insisted on pills being less than 100 days old. At first they hemmed/hawed, then both competing pharmacies dropped their earlier estimates to 6 months... and most recently down to 3. Guess I wasn't the only LDN patient who experienced it loosing some of its "oomth" by the end of 3 months. I've heard (but it is only anecdotal) that the liquid form is only good for 1 month. Maybe you've heard that too, or something along those lines. I have also heard that Skips offers all of their LDN (pill or otherwise) in only 30 day old batches. That leads me to suspect strongly that age is definitely a potential achilles heal with LDN yet few people are aware of it. Another point, tho I am reluctant to bring it up, is that... in my personal experience starting LDN, I definitely felt worse in the beginning. It may be that some folks will also feel worse before things turn around; or it may be that in my case I was undergoing pred withdrawal when I started on LDN, and those early bad days may have had more to do with coming off pred than starting up on LDN. Just a bit of conjecture; but I believe others have reported similar... things got worse before the LDN kicked in. And in your case, especially with the small initial doses, I wonder if LDN kicking in may be delayed. For whatever reason, taking too much or too little seems to impede the arrival of that ... "eureka" .. moment. You know what I mean?
David
Co-Founder
- Location
- Naples, Florida
HI asheena and welcome to the community I'm sorry you're having troubles right now.
I find it very interesting that your doctor is giving you a hard time about LDN but then turns around and prescribes you Pentasa considering the data for it and Crohn's disease is quite lacking. There's a reason Pentasa is not even approved for use in Crohn's disease. He's using it off label.
Anyway, again, welcome. Kev is our resident LDN expert and a wonderful person. If I was going to listen to anyone about LDN, it would be him.
I'm sorry you're having troubles right now.I find it very interesting that your doctor is giving you a hard time about LDN but then turns around and prescribes you Pentasa considering the data for it and Crohn's disease is quite lacking. There's a reason Pentasa is not even approved for use in Crohn's disease. He's using it off label.
Anyway, again, welcome. Kev is our resident LDN expert and a wonderful person. If I was going to listen to anyone about LDN, it would be him.
Thanks everyone. The big D has been a bit up and down over the past few days - Friday night it had settled down a bit, then came back with a vengeance last night. Psyllium seems like a good idea, probably better for my system than immodium, thanks ctrl z.
Hi Kev, no problems about questions, ask away! The LDN doc prescribed liquid for me because I was starting off on a low dose. I get my prescription on a monthly basis, so that would fit in with your advice on its shelf life. I'm going up to 4ml this week and 4.5ml next week - so hopefully that 'eureka' moment is not too far away! Thanks for your support - trying desperately not to give up on LDN. Due back at my GI next month and would really like to give him some positive news as I think he will try to persuade me to come off it and go with the AZA. He has already said I can't use it along with the AZA.
Thanks for the welcome David. I have Crohn's colitis and I think that is why my GI thought Pentasa might help. Interesting though, that he is using it off label. Must bring that up and chin him again about an LDN prescription off label.
Hi Kev, no problems about questions, ask away! The LDN doc prescribed liquid for me because I was starting off on a low dose. I get my prescription on a monthly basis, so that would fit in with your advice on its shelf life. I'm going up to 4ml this week and 4.5ml next week - so hopefully that 'eureka' moment is not too far away! Thanks for your support - trying desperately not to give up on LDN. Due back at my GI next month and would really like to give him some positive news as I think he will try to persuade me to come off it and go with the AZA. He has already said I can't use it along with the AZA.
Thanks for the welcome David. I have Crohn's colitis and I think that is why my GI thought Pentasa might help. Interesting though, that he is using it off label. Must bring that up and chin him again about an LDN prescription off label.
David
Co-Founder
- Location
- Naples, Florida
I can give you two small studies that showcases that LDN is statistically efficacious in people with Crohn's Disease. Pretty much all newer data of Pentasa in Crohn's Disease slams its usage and "A Cochrane review (very strict) of 1420 patients found there was no improvement over placebo and didn't feel further study was justified."