- Location
- Midwest
I was wondering if LDN is for mild cases. Has anyone had many medications fail and find remission with this drug? Has anyone used it after Remicade or Humira? Why do people seem to say it takes a long time for it to work?
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Is LDN only for mild crohn's?
- Thread starter Brian'sMom
- Start date
Kev
Senior Member
- Location
- Halifax, NS, Canada
I have (had) severe Crohns and Ulcerative Colitis. I tried various typical medications, the last prior to starting LDN was AZA... which put me in the hospital for side effects. The next 'standard' medication that was viable for me was Methotrexate. However, after the issue with the AZA, and the potential side effects Metho is known for, my GI agreed to trial me on LDN. She even arranged for a local pharmacy to compound for me (the nearest, actually the only pharmacy in Canada at the time which did compound it was in Toronto). I caution anyone trying it not to expect immediate results. In fact, I advise (but I'm not a doctor, have absolutely no medical qualifications whatsoever) folks they should prepare to try it for a full 12 weeks, and there is a good chance they will flare or get worse before they get better. However, I'm given to understand that loading doses for other medications ALSO can take 12 weeks to be effective. If that is the case, then LDN is on par. I really don't understand the mechanics of how LDN does its thing, works its magic. The basics are that you take just enough, at bedtime, to trigger a 'rebound' effect. Bedtime is recommended because otherwise you might experience a feeling of being 'wired'... and some report sleep disruptions. Only side effect I ever encountered were the most wonderful, super-realistic dreams that involved all the senses. And these were heightened senses. Don't know of another drug where, when the side effect goes away, you miss it... and wish it came back. This November will mark 6 years I've been on this drug. No issues, no side effects, no extra intestinal manifestations. Just health. LDN gave me my life back. I work 5, 6 days a week, 10 - 13 hours a day, a physically demanding job... and I'm no spring chicken. The only issue LDN can't resolve is scarring from my disease. I've posted photos of my internal scar tissue (not for the squemish) in another thread on this Forum. Looking at them illustrates the damage this disease can do in a short time... and maybe give you a rough idea of how bad my disease was, OK?
The issue with LDN is that there have been less than a handful of studies... 2 on adults and 1 on children. However, the results of all have mirrored one another. And, they say that LDN is a safe, effective treatment for IBD. In a Norwegian documentary on LDN in another thread, a doctor in Dublin, Ireland, who treats a number of his patients with it (not just for IBD) stated it was safer than taking aspirin. Ireland and Norway have been using it for over a decade. So, it has a history of being used and a pedigree of safety.
Since there have only been a few studies, and it hasn't been FDA approved yet (hope is that will happen next year), doctors are reluctant (at best) to prescribe it. This can be an issue... pursuing LDN may jeopardize your relationship with your doctor. It shouldn't happen.. but it might. If you pursue it, and obtain a prescription, the next hurdle is to find a competent pharmacy to compound it. Not as hard as it used to be. Now there are 3 pharmacies in my city that compound it. So, the list is growing, and growing, OK?
I provide this info simply as food for thought. The choice is yours. The fact is there isn't a safer medication to take that fights CC, CD, UC, as effectively as LDN. Period!
The issue with LDN is that there have been less than a handful of studies... 2 on adults and 1 on children. However, the results of all have mirrored one another. And, they say that LDN is a safe, effective treatment for IBD. In a Norwegian documentary on LDN in another thread, a doctor in Dublin, Ireland, who treats a number of his patients with it (not just for IBD) stated it was safer than taking aspirin. Ireland and Norway have been using it for over a decade. So, it has a history of being used and a pedigree of safety.
Since there have only been a few studies, and it hasn't been FDA approved yet (hope is that will happen next year), doctors are reluctant (at best) to prescribe it. This can be an issue... pursuing LDN may jeopardize your relationship with your doctor. It shouldn't happen.. but it might. If you pursue it, and obtain a prescription, the next hurdle is to find a competent pharmacy to compound it. Not as hard as it used to be. Now there are 3 pharmacies in my city that compound it. So, the list is growing, and growing, OK?
I provide this info simply as food for thought. The choice is yours. The fact is there isn't a safer medication to take that fights CC, CD, UC, as effectively as LDN. Period!
- Location
- Midwest
Kev,
Thanks for the info. Since we're better than we were before the biologic...its just not getting it done 100% anymore...what's your opinion of staying on Humira during the waiting period? (PS, We saw good results in the first week using a biologic...so the waiting will be hard. I'll worry we're letting damage happen). My son said yesterday, "I don't want to do the really painful Humira if its not helping me". I don't blame him. He seems to be medicine resistant. The first thing he took was azathioprine and prednisone. Prednisone brought his numbers down once only to go right back up after the taper. The second time...nothing. Aza did nothing for him either. So far we've only seen results from the tnf stuff. I'm scared to move to another. I feel like this is our window to try something else...but so scared I'll be part of messing up his intestines.
Jacqui,
I got your PM. Then saw this post. What did Jack start with in SED and CRP before the LDN?
Thanks for the info. Since we're better than we were before the biologic...its just not getting it done 100% anymore...what's your opinion of staying on Humira during the waiting period? (PS, We saw good results in the first week using a biologic...so the waiting will be hard. I'll worry we're letting damage happen). My son said yesterday, "I don't want to do the really painful Humira if its not helping me". I don't blame him. He seems to be medicine resistant. The first thing he took was azathioprine and prednisone. Prednisone brought his numbers down once only to go right back up after the taper. The second time...nothing. Aza did nothing for him either. So far we've only seen results from the tnf stuff. I'm scared to move to another. I feel like this is our window to try something else...but so scared I'll be part of messing up his intestines.
Jacqui,
I got your PM. Then saw this post. What did Jack start with in SED and CRP before the LDN?
Kev
Senior Member
- Location
- Halifax, NS, Canada
I don't know the implications/ramifications of mixing LDN with biologics. Scar tissue is a real concern... my life would be a lot less painful without mine. I wish I had a definite answer on this. I don't. All I can suggest is you take into consideration the pros/cons of a biologic... benefits, potential side effects, shot site issues, and weigh that against possible scarring. It seems to me a damned if you do, damned if you don't scenario.
- Location
- Midwest
Yes...I don't want him to get scar tissue from ongoing inflammation. If I'm hearing you right, you're going with get on something that gets that under control the quickest.
Kev
Senior Member
- Location
- Halifax, NS, Canada
Well, I'm saying I don't know for sure if you can mix LDN with biologics... seems we had this debate before. The simple answer was that biologics wouldn't interact badly with it, nor vice versa. Hmmm, am I making myself clear? Probably not. OK, my take on what the experts are saying is that... if you take LDN with biologics it wouldn't cause any adverse side effects... so it is safe to do so. But, would the biologics delay LDN in doing its thing... that still remains unclear. I know of no conclusive medical studies that say combining the two is effective... or less effective... than simply going with one of the two.
However... and this depends on any prior experience with pred... if limiting flares, thus minimizing scar tissue until LDN does kick in, is the goal you're shooting for... why not start a round of pred treatment. When the taper phase reaches 10mg or less, start the LDN. Pred withdrawal isn't fun, but it has been definitely stated that LDN can be used with up to 10mg of pred. Just a thought... And, yes, I would advise limiting scar tissue.
However... and this depends on any prior experience with pred... if limiting flares, thus minimizing scar tissue until LDN does kick in, is the goal you're shooting for... why not start a round of pred treatment. When the taper phase reaches 10mg or less, start the LDN. Pred withdrawal isn't fun, but it has been definitely stated that LDN can be used with up to 10mg of pred. Just a thought... And, yes, I would advise limiting scar tissue.
I am seeing results with LDN (also with Uceris, but I know the LDN is doing something for me - this combo is working better for me than 40mg/day of pred did earlier in the year), and I have been on almost everything (Asacol, Pred, Cipro/Flagyl/Vancomycin/Xifaxin (uh, not all at once!), Entocort, MTX, Imuran, Humira, Remicade, would have tried Tysabri but tested positive for JC virus...I also take probiotics and VitD, have tried SCD, you name it - the only thing that worked for a decent stretch of time was Imuran, which bought me about 4.5 years of remission, but eventually lost efficacy). My disease has been classified as severe, and my doctor has mentioned surgery more than once (I have disease from the TI down). After one month on Uceris/LDN, I had an MRI that showed massive improvement (though not remission).
I started Uceris and LDN at the same time. I responded very quickly (and faster than I respond to prednisone). And I saw continued improvement over a couple of months (and then it went downhill, but you can see my post on the 30day/90day LDN thread - I am fairly certain this was due to the age (nearly 6 months) of my meds).
I know of one other CD patient at my treatment center who is on LDN, and it "saved her life." Like me, she was out of non-surgical options and her disease was considered severe. Luckily, she convinced her gastro to try it...luckily, because he's in the same group as my gastro and I'm sure that helped to convince him to write me a script (though I can be rather convincing, myself).
I started Uceris and LDN at the same time. I responded very quickly (and faster than I respond to prednisone). And I saw continued improvement over a couple of months (and then it went downhill, but you can see my post on the 30day/90day LDN thread - I am fairly certain this was due to the age (nearly 6 months) of my meds).
I know of one other CD patient at my treatment center who is on LDN, and it "saved her life." Like me, she was out of non-surgical options and her disease was considered severe. Luckily, she convinced her gastro to try it...luckily, because he's in the same group as my gastro and I'm sure that helped to convince him to write me a script (though I can be rather convincing, myself).