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11-20-2013, 06:24 PM   #301
Kev
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And you've checked your saliva for long strands, right? That's a dead giveaway re Candida
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Low Dose Naltrexone Nov 2007 - May 2014
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11-24-2013, 02:46 PM   #302
Wendy M
 
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I wondered if anyone else had the same experience while taking LDN? Every so often I go backwards for a little bit and then start improving again.
11-26-2013, 06:59 PM   #303
Kev
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The only times I ever noticed any.. hiccups.. slight backsliding... was either when the pills were near the end of their potency usefulness... OR.. if a bug of some kind over-taxed my immune system. And that was in the early days... its been rock solid steady for years now. So, I'm thinking (dangerous for a guy my age to try new things) that with time my immune system got better and better. Just a wild assed guess on my part.
12-02-2013, 01:59 PM   #304
tincup
 
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Hello everyone. I have been reviewing your postings for several weeks and today got my prescription for LDN and the pharmacy is making it according to specs (4.5mg, no calcium carbonite filler and immediate release). I am 42 and have crohns in the anal/rectal region. So pleasant. It has never really altered my lifestyle and has been more of an inconvenience. However, the last few months I have been in a flare. I have went through a pretty stressful time so that may have caused it. My scopes have shown ulcerations in the rectum and I suffer from proctitis. I currently have a stricture issue in the anal/rectal area. My GI is great and currently has me on steroid enemas and proctofoam and canasa suppositories. The last couple of weeks have been great. However, I know I cant stay on the steroid enemas forever (I wish I could) and that's what scares me. A young CRS recently told me that if I did not take Remicade or at the very least Imuran then she would be removing my you know what within a year or two. My GI doesn't think it is as pressing as what she indicates and told me not to go see her anymore (went because of a small fissure that has now healed) and she just has finished her residency so maybe she lacks experience. Nevertheless, it is still scary.


Back to the point. I have read your posts and appreciate your information and have said a prayer for all of us. I have many questions about LDN as I am skeptical by nature. Here are some of my thoughts and questions.

1. Has anyone here actually experienced mucosal healing? I know Kev has but anyone else.

2. Why does it take so long to work? In Smith's trials didn't they have improvement by 8 to 12 weeks?

3. In regards to Dr. Smith. I am skeptical that she has something to gain from the outcome of the clinical trials and wonder if there are any trials from any other Dr. or entity.

4. Is it ok to take this 4.5 mg dose while taking steroid enemas.

5. Has anyone else had rectal issues which LDN helped.

By no means am I trying to discount this therapy. I feel like I know all of you and find each of you that have posted very pleasant and honest people. I just want some feedback before I start taking it. I don't want to discontinue what my doctor has prescribed as I trust him and at the same time I do not want to take anything that will make it less effective. But if this is a treatment that cannot hurt then why not take a chance? Thanks in advance and sorry for long post.
12-02-2013, 02:09 PM   #305
JDTM
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tincup! Best of luck. Here's my not-very useful feedback:

1. I can't say, because I haven't been scoped since beginning taking LDN.

2. Not sure why it takes so long to work -- in fact, it might work right away, but just really slowly. It's kind of a gradual thing. I noticed a difference at about the three month mark, but it was so gradual that I really had to think about it (i.e. "gee, I was really a bit worse off three months ago, I guess"), and beyond that point the gradual improvement continued. I feel pretty solid overall now, despite the occasional "off" day.

3. No idea -- Jill Smith and Dr. Zagon are the only two names I've heard associated with LDN, and although I could be mistaken, I think that perhaps they worked together?

4. Not sure about enemas, but taking a low dose of pred (10mg) seems to be OK. I've taken budesonide (Entocort) while on LDN, and that's also a corticosteroid that's designed to release in the intestine. I would hypothesize that steroid enemas would be similar, just acting in a different area... but I'd check with a GI just to be safe.

5. N/A

Keep us posted, for sure.
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Hi, I'm Jesse!

Current meds:
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fluoxetine (40mg)
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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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multivitamin
2000IU vitamin D-3

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gastritis & duodenal ulcers, August 2011
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12-02-2013, 02:16 PM   #306
Jmrogers4
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1. Yes, my son had mucosal healing. I'm not sure how long it took to achieve but I can tell you he had scopes after 8 months on LDN and there was no sign of active disease only pink healthy tissue.

2. Personal opinion is it takes so long to heal as I believe it heals from inside out just like a really deep cut or surgery it takes a while for the body to completely heal itself.

3. TNI Biotech has purchased the orphan patent rights to LDN and last press release they had FDA approval to begin Phase III testing which is supposed to happen in 2014.

4. According to my son's GI it is okay to take while on steroids.

5. Sorry no help on the rectal issues, my son's locations are TI, Large Colon, Small Intestine and Duodenum
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Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
12-02-2013, 03:14 PM   #307
tincup
 
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Guys thanks for your responses. It helps to know that it has helped you and that is why I am going to go for it. I just hope that my assessment "it can't hurt" is correct. I will keep you posted and look forward to more replies.
12-02-2013, 03:37 PM   #308
JDTM
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It really can't hurt, in the sense that there is a really low side-effect profile -- it probably won't cause you any harm in that sense. That said, I would offer one disclaimer: If you're using it instead of other medications that might get the inflammation under control faster, you might be setting yourself up for problems if the LDN doesn't work, and you end up leaving a flare unchecked for a significant amount of time. If someone had really super severe IBD, it might be in their best interest to get it under control quickly in order to avoid further complications (e.g. scarring, etc.). I think that in your case, however, you're also treating with corticosteroids, so it sounds like you're approaching this from multiple angles.
12-02-2013, 08:14 PM   #309
tincup
 
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Thanks jdtm

I am definitely continuing my current treatment. Also Kev thanks for all of your input in this forum.
12-02-2013, 08:28 PM   #310
tincup
 
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Thanks JDTM

I will definitely stay with my current treatment. Also Kev I appreciate your input on this forum. Your Ldn posts have been encouraging.
12-02-2013, 08:30 PM   #311
tincup
 
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Im an idiot using a smart phone. I thought my first reply did not post so double thanks.
12-11-2013, 01:01 PM   #312
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Hi, I have crohns and ms. I am telling my Doc I want to start 4.5 of LDN. Do u guy's think it really helps? Running out of options.
12-11-2013, 01:31 PM   #313
tincup
 
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Julies

I have just started so i dont know. Just been on it for a week and may have gotten worse just a tad. I had went 15 days with no signs of bleeding and today saw a small trace. I am on cortenema and proctofoam as i only have rectal involvement. The bleeding could have come from a small fissure i have been dealing with and not my crohns. I wish i could tell you more and offer some help. I just decided to try this before starting the big guns or surgery and thought it could not hurt. I am very depressed today as it appears i have taken a step back. I am sure Jdtm, kev and joyce can help you more.
12-11-2013, 02:23 PM   #314
inanitsch
 
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Hi Julies-child, I'm a member of a facebook group for LDN, and there are a lot of people there using it for MS. I think most of the MSers start slow with 1 mg and then go up monthly. My daughter has crohn's and her doc started her slow as well. Started 1 mg and then went up by 1mg every week. We go back to her doc tomorrow for blood work. Hopefully her sed rate and crp will be good, however she tested positive for lymes disease and co infections, so that's a whole nother ball of goo we will have to address.
12-12-2013, 05:19 AM   #315
lsgs
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Julies

I have just started so i dont know. Just been on it for a week and may have gotten worse just a tad. I had went 15 days with no signs of bleeding and today saw a small trace. I am on cortenema and proctofoam as i only have rectal involvement. The bleeding could have come from a small fissure i have been dealing with and not my crohns. I wish i could tell you more and offer some help. I just decided to try this before starting the big guns or surgery and thought it could not hurt. I am very depressed today as it appears i have taken a step back. I am sure Jdtm, kev and joyce can help you more.
When I went on LDN I felt like absolute hell for the first couple of weeks. I was bleeding, in a lot of pain and could not get out the bathroom. I wanted to give it up and go back to my painkillers but my husband made me keep going.

I am up to 2mg and the difference is pretty spectacular. I just went a couple of weeks on holiday with no pain and entirely normal bowel movements. I have had 'flare ups' with mild pain and the odd loose bowel movement but nothing serious, and no bleeding. The only thing I can't get rid of is nausea but I am still at a low dose, my doctor prefers to step up slowly and he thinks it will all get better when I reach my 'threshold' since I've responded well so far.

Anyway, long story short, even though you feel like hell in the beginning, persisting can pay off!
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12-12-2013, 09:08 AM   #316
tincup
 
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Good to know and thanks for some encouraging words. I have got worse it seems but just on my 8th day. I will not give up on this. I just hope in a couple of weeks i am sorted out. I jumped right in on 4.5 mg so i am sure there will be an adjustment period.
12-12-2013, 10:55 AM   #317
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Thanks everyone! I am going to start it as I can't see any harm in trying.
12-28-2013, 06:36 AM   #318
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Hello! Back again!

I had been taking LDN for just over 2 weeks. I thought the pains I was having we're "it gets worse before it gets better" and so kept toughing it out. It was only when I went to the GP to check my B12 and folate results, that the blood tests showed my blood tests were off the scale. I was urgently referred to the hospital, where I have been for the last 3 weeks. I had a large abscess on my intestine, 15cm x 2 cm and it had blocked my right kidney. I don't think the LDN could have competed with that! I didn't.t realise how I'll I had been despite not being able to go out and couldn't do the day job. I had the abscess drained by CT technology and ultrasound. I'm home now but still have the abdominal drain attached as a precaution. Now resumed LDN although I don't think the consultant has much faith that it will work, and am on antibiotics for a further 4 weeks until I see him again.

I have a nuclear scan booked for MondAy to check my urinary function and hope that the blockage has gone, otherwise it. Oils mean a stent has to be inserted or a drain put in.

Has anyone had anything similar happen - and will the fistula heal itself with the LDN. The consultant hasn't said anything about this to me and, surely if the fistula does not heal, this could happen to me again?

I still have some low grade pain in the centre of my stomach and kidney area, which I didn't have when leaving hospital. Beginning to become paranoid now!

Sally
12-28-2013, 06:19 PM   #319
Kev
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Hi Sally

Sounds like you've been thru the wringer. Wish I could offer some optimistic news, but I 'think' the a/b's will delay LDN from kicking in. A/B's knock the stuffing out of the good biotics too... and those puppies are the backbone of our immune system, so if they go down... so does the immune system... and that slows LDN's rebound effect from working ON the disease. That is my rudimentary and completely uneducated take on the medical mechanics at work. Sooooo, if it plays out that way (LDN being even slower to work than normal, you might want to wait and see what happens AFTER the A/B's have worked their way out of your system AND your good bacteria rebounds) then that may be what is going on. Just my wild assed guess as to a further possible hiccup in your treatment plan.
12-28-2013, 10:32 PM   #320
tincup
 
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Sally

I am sorry you are suffering but hopefully you are on the mend. I am glad Kev responded. He, Joyce and JDTM know their stuff. I am a newbie in regards to LDN (just over 3 weeks). I wish i could tell you that it is helping but at this point I cannot tell any difference. But i am going to continue to take as most on here say it takes weeks before it helps. That seems strange though since most clinical trials were for only 12 weeks. Regardless I would not depend solely on Ldn at this stage. Take your doctors advice and use Ldn in conjunction with your other therapy. And by all means let your doctor know you are using ldn. I know i have not really assisted you in any way but hang in there and things will get better.
12-29-2013, 12:27 PM   #321
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Hi Kev and Tincup,

Thank you for responding. I have been taking probiotics, which I always do when taking antibiotics, so praying that something works with the LDN, as the doctors over here do not have much experience of the drug for use with Crohns, and I fear will use any excuse to put me on something else.

I am not on any other treatments other than the antibiotics - that will be for a total period of 7 weeks, by the time I see my consultant again. I hate taking them as they always make my Crohns flare. I believe it was antibiotics which caused me to have Crohns in the first place (but that is just my theory)

I will keep on the LDN and hope that it is the drug for me.

Out of interest Kev, do you think the LDN can heal fistulas?

All the best and a Happy New Year to you both.

Sally
01-03-2014, 04:50 PM   #322
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Joining. Thanks for this group. Started LDN at 3mg then upped to 4.5mg two weeks ago. Flaring now. But initially felt ok. Hopefully it will work for me too!!!! Last resort...
01-13-2014, 09:50 PM   #323
superzeeman
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I went to see my shrink today for my bi-annual checkup and she asked if there were any new medications I was on. I explained that I was on LDN and she got real excited and asked me where I got it, who prescribed it etc. Anyway, she said she has been looking for somewhere to get it and that she wanted to prescribe it to some of her patients that were having a real hard time with traditional meds. She went on to tell me that according to research that it can help those with depression that is not responding to other medications. Who knew? She was so thankful that I was able to tell her where to get it compounded too. Anyway, I guess I am getting a double benefit from LDN.
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02-14-2014, 10:47 PM   #324
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Hi again, fellow LDN-believers. I was diagnosed with Crohns' in May of 2013 and started LDN in September of that year. I didn't really notice much of a difference until I cut out the Starbucks hot chocolates (crazy!), and then I started to feel pretty much like I used to feel pre-Crohn's - hooray!

BUT . . . during the last month, I have had one virus immediately following another virus and I have been sick almost the entire month. I got a bad cold, was healthy for two days, got a worse cold, was healthy for two days, and got a stomach virus (the worst I've had for at least 10 years - and I am not over this one yet). I am not having digestive problems anymore, but this is almost as bad, I think . . . don't know what's going on and I am feeling sad and frustrated. Before this, I haven't had a horrible virus for years, and now I'm catching everything that comes along (I work with kids, too, so it's especially annoying not to be more resistant!)

It does make me wonder if LDN is helping my immune system to reset - and possibly become less over-reactive. And maybe I will get sick more often for a little while before it gets settled down. It seems a little strange that it took 5 months, if that's what is happening, but I guess that might follow the pattern of LDN taking a long time to be effective.

Has anyone else had a similar experience with falling HARD for every virus that blows your way after starting LDN?

Thanks to each of you who has commented or shared your experiences or questions here. I read everything and value having a group of people who are going through similar stuff.

-Christie
02-15-2014, 11:11 AM   #325
Kev
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I seem to recall, in the early days, that I'd get colds, flu, etc... and it would hit me really hard... AND that my IBD symptoms would increase... like a mini flare... but that if I rode it out, things would go back to being A-OK. These days, IF I catch a cold, flu, whatever, my body seems able to throw it off in record time (I don't know, but I think that aspect of it is some remnant of the IBD... I still have an over -reactive immune system). None of my IBD symptoms have come back in recent years (bear in mind I've been on a 6 + year hiatus of sorts from my disease) yet my immune system still seem to be over... vigilant??

Oh, and a little bit of a retraction, of sorts. Last year I quit smoking, and suddenly I had sleep disruptions... which I initially attributed to LDN. I changed the time I took my LDN (used to take it just before going to sleep for the night) to early evening, after my supper.
Slowly, the sleep issues went away... I recently switched back to just before going to sleep... and no sleep issues. So, I can't honestly determine whether I was experiencing the 'sleep' issues due to LDN, or due to nicotine withdrawal... or a little of Column A N B.

In any event, I was WAY wrong to initially 'pooh, pooh' (Ooooh, should a Crohnie even say that?) sleep disruptions as a 'bad' side effect. I commiserate with anyone who has had the 'pleasure' of sleeping awake...

And, if I can help anyone, anyway, with LDN, drop me a line, tag me, or private message me
02-27-2014, 12:35 AM   #326
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I have recently been diagnosed with Crohn's, I have a 3cm stricture in my TI also. I am on no medications other than a stool softner d/t constipation from the stricture. They want to put me on Imuran and I am not going for it...scared of side effects!!! I asked my GI about LDN (well, the nurse practitioner) and she said "we don't use that" but when I asked why she couldn't give an answer. I REALLY want to try LDN but don't know how to find a doctor that will rx it. I live in Southern Indiana....any suggestions?
02-27-2014, 08:21 PM   #327
Deteoj
 
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Hi

I found a doctor that does chelation therapy, any MD into that type of treatment would be a good place to start. I dropped off the research articles from pubmed on LDN trials for crohns and got a call back in a couple of days saying he would prescribe this for me.

I will caution you, you are going to have to know how to dose yourself, like starting off at 1.5 mg and working up to 3.0 mg and going to 4.5 mg. For example Dr. Zagon has a video that says he does not know if you will get a positive result taking it once a day like most people do, or perhaps you need it every other day or even twice a day. You cannot expect a chelation doctor to "know" anything about dosing or any side effects that can occur. You will in effect become your own doctor. so there is definite risk and you have to know all the ins and outs yourself.
02-27-2014, 11:48 PM   #328
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Thanks for the info. ....I am more than willing to take the challenge just have to find a doctor willing to take it with me!!
02-27-2014, 11:50 PM   #329
nrsenit
 
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^^^^^ that seems to be the biggest challenge right now
03-14-2014, 06:30 AM   #330
Wendles
 
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Hi guys,
My son has FINALLY started LDN !!!!!! Yippee after pushing for a long Time his new specialist has agreed to let him start 3 mg . My son has just been hospitalized for 2 and a half weeks with a 10 cm abscess in his abdomen which has not budged at all after being on triple antibiotics this whole time we were getting pretty desperate and I have been researching this drug for a long time. He has only been on it since Tuesday but does seem to have a lot more energy ( not sure if this is because of the LDN or just happy to be home we have been through hell the last couple of weeks now hoping this drug I have dreamed of giving my son gives him some remission so he can put some weight on and finally grow. Please everyone cross your fingers and toes for us.
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