Low Dose Naltrexone (LDN) Support Group

[Wendy M]

I have been on LDN for a couple of years. It is the closest I have ever come to
Being in remission. However although I am still taking it it doesn't seem to be working anymore. I decided to try getting it from Skips pharmacy as I am wondering about where I have been getting it made and how fresh it is. My biggest question is that I don't have any active inflammation at this time however I still have some symptoms and wonder what all your thoughts are on if it would still be helpful to me?

 

[KHCD5]

I gave LDN a try recently in combination with my current treatment of Azathioprine and Allopurinol. The prescribing doctor suggested I start at 4.5mg of LDN as he stated starting at a lower dose just delays it's effectiveness.

I took the LDN right before I hit the pillow and couldn't sleep at all. I tried it for a few days and it didn't get any better so I have discontinued for now. The doctor suggested I take LDN in the morning and I wanted to see if anyone else has had a good experience taking LDN in the morning and if it makes sense to do so. I thought the mechanism of the drug made the most sense at night. Any negatives to taking it in the morning? Also should I request a lower dose?

 

[kimmidwife]

You should start with a Lowe dose and build up. There are plenty of people who take it in the morning. Good luck keep us posted.

 

[Tryagain]

Hi. I am currently on no meds, I had a repair and ileostomy 2 years ago and resection last year. The crowns has crept back at the reaction site. I have mostly grumbling disease, most days loose movements or D and i am on a restricted diet, keep trying and failing to stick to SCD. I am due to meet with my GI soon and they want me to start Azathioprine ( rmeicaid ) I am wondering whether it is worth me trying LDN first. Reading through these threads it is hard to see how many people have really benefitted and whether this medication would suit my version of this disease ( terminal ill crohns ). I am in the uk and its not easy to get the drug prescribed here but I would like to try it before taking immune suppressants. Are there any really good experiences with LDN which might persuade me ! Thanks

 

[JDTM]

Tryagain -- LDN has worked pretty well for me thus far, and my disease is also localized in the terminal ileum. That said, my case was "mild" (even though it didn't feel mild at the time) and it took me a long time to get into remission. LDN doesn't have an immediate effect for some folks, and for me, the change was so gradual that it almost seemed imperceptible.

That said, I'm still on LDN and it's been a few years now. Full disclosure: I also take 5-ASA meds (used to be Pentasa, then switched to Lialda because of insurance/prescription coverage).

Also curious about what the docs want you to take... Azathioprine (also known as Imuram) is an immunosupressant, and I think it comes in pill form. Remicade, on the other hand, is a biologic medicine that is administered by infusion. Do you know which one the GI wants you to start on?

 

[Tryagain]

Hi and thanks for your reply. I'm in the UK and its azathioprine, sorry I got the wrong US equivalent ! I tried it once years ago and it caused some liver problems then but they want to try again. Ive had crohns for 15 years and managed mostly on liquid diets and entocort both on and off when needed. I wouldn't say my symptoms are severe but they are really low level persistent so cause damage over time. Good to hear LDN worked for you. Do you know of others who have had success as well ?
Cheers

 

[JDTM]

There was a guy on here named Kev who had many years of success on LDN, but then relapsed. I think he left the forum, but if I remember things correctly, it was unrelated to his illness. He was the reason I heard about LDN in the first place though!

I'm like you -- low level inflammation compared to some, but over time that stuff can add up, so I'm trying to keep it at bay. I was only diagnosed in 2012 and I've only been on budesonide (Entocort) a couple of times, but it seems to knock down the inflammation and get things back under control.

With all of that said, if you can take LDN, then great! But I wouldn't necessarily rule out stepping up your meds to something stronger if that's what it takes to get things under control. I know that azathioprine doesn't work for everyone (some folks have a bad reaction, like you mentioned), but I'd probably give it a shot if LDN wasn't doing the trick anymore. Perhaps you can do both... I don't think the LDN interferes with many of the standard IBD meds out there, with the exception of corticosteroids (specifically, prednisone over a 10mg dose).

 

[JDTM]

In addition, another forum member might have some stuff to add -- Jmrogers4 -- her son was on LDN for a bit and it was working for him for a while.

 

[Tryagain]

Thanks so much thats all really helpful. I think you're right, after my operations its finally time to get medicated ! Good luck to you. I'm glad you are doing well and keeping in touch with the forum to share that.

 

[irishgal]

I'm also on LDN for terminal ileum Crohn's, but I use is as an add on therapy to Anti-MAP antibiotics. (AMAT) I did so well on AMAT that when I started the LDN about 6 months in, it was hard to tell if it was doing anything. The theory (immune modulating effect, rehabing your immune system to function correctly) seems sounds with what I know of CD though. Not a ton of research though. I think most of it out of UPenn.

So after taking it for almost a year, I sometimes have some sleep issues, but really no other side effects and my CD is still fully gone, so I'm happy and not messing with anything lest I relapse. I had pretty bad CD previously, and I know what you mean about it continually creeping. Mine just coming back at me. I'd fix one thing, and another would break! You know, if you're in the UK, you may wnat to look up Dr. Sanderson in London. I hear he's good and open minded. I know he uses AMAT. Good luck!

 

[Tryagain]

Thanks irishgirl, I am seeing the doctor this week so will research AMAT which I haven't heard of before as a therapy. I have taken quite a lot of antibiotics over the years and so I'm a bit wary of taking them long term though ! Will check it out. Thanks again for your help

 

[Corpcleg]

Hi All
Apologies for not replying sooner (very busy with work /life etc) I am off Remi since Oct 2015 and on LDN 4.5 MG since Sept 2015, my gut has never been better I am now eating all sorts (Not always a good thing without issue, I have had a colonoscopy recently and although i was a bit out of it from sedative the nurse mentioned that I had no visible signs of crohn's in my gut,I am waiting to chat to my Doctors in August for a review, I dont feel my health is 100% but my gut has improved no end since I quit Rem and started LDN,, I will post back soon and hope to have confirmation of good news from consultants, My fistula doesnt leak at all either and I think it has shrunk, I may consider getting a cutting seton to try to get it removed this year
I will report and will try to keep in better touch from now on
I wish all on this forum the very best
Cleg

 

[hamster139]

Hi All. Just started on LDN... just a few days actually. It has definitely helped in the short run with my CD... and my fatigue has gone from horrific... to not too bad.. Since the Fatigue is what has really destroyed my life.... this is a really welcome change.... I hope this lasts!!! Do others here have the same result with improvements in overall fatigue and crashes?

 

[karj]

Hi All
Just wondering if anyone has tried this drug in Ireland? Is it available here? Also is it okay to use it with Humira?

 

[karj]

Hi All
Apologies for not replying sooner (very busy with work /life etc) I am off Remi since Oct 2015 and on LDN 4.5 MG since Sept 2015, my gut has never been better I am now eating all sorts (Not always a good thing without issue, I have had a colonoscopy recently and although i was a bit out of it from sedative the nurse mentioned that I had no visible signs of crohn's in my gut,I am waiting to chat to my Doctors in August for a review, I dont feel my health is 100% but my gut has improved no end since I quit Rem and started LDN,, I will post back soon and hope to have confirmation of good news from consultants, My fistula doesnt leak at all either and I think it has shrunk, I may consider getting a cutting seton to try to get it removed this year
I will report and will try to keep in better touch from now on
I wish all on this forum the very best
Cleg

Were you able to get this drug in Ireland Cleg?

 

[bluzstar]

Hello Everyone,

I am new to this group. I was diagnosed w/ SIBO (small intestinal bacterial overgrowth) about 8 months ago and have been treating via diet, supplements & herbal antibiotics under the supervision of 2 MDs and 1 naturopath. I was prescribed LDN to aid intestinal motility. I have been taking LDN for about 5 weeks.

I have not noticed any change in intestinal motility unfortunately, however my peripheral neuropathy and arthritis have both improved significantly on the LDN!! This has been a godsend as I was unable to tolerate any of the previously prescribed medications for neuropathy.

I am experiencing one troubling side effect since I began the LDN: stomach pain. This usually occurs approximately 3 hours after taking my once daily dosage. I was initially taking LDN at bedtime, then changed to dinner with the hope that food might buffer the effects somewhat. I originally began w/ a dose of 4 mg, then lowered to 2 mg with the hope that might eliminate the stomach pain. I am still experiencing some relief from neuropathy at 2 mg but am concerned about the continued stomach pain. The stomach pain is not constant throughout the day. It peaks about 3 hours post LDN ingestion then continues and tapers off in several hours.

LDN has an anti-inflammatory response as I understand so it seems odd it would cause pain. I am going to ask the pharmacist what filler she is using to compound with. Perhaps calcium carbonate could cause stomach pain?

Has anyone experienced stomach pain as a side effect from LDN? Thank you for any feedback.

 

[kimmidwife]

It definitely sounds like it is coming from the filler. Stomach pain is not a common side effect of LDN. However LDN is not known to improve stomach motility either so not sure why your doctor would give it to you for that.
Domperidone is the best drug for improving stomach motility though it does have some risks with it. You must have a cardiac eval. Before starting Domperidone as it can cause changes in the heart rhythm and if taking it long term you should have an EKG every three months. The changes in heart rhythm do go back to normal if the drug is stopped. (This happened to me so I know it does go back to normal).
Hope this helps.
You also might want to try liquid LDN if the fillers keep bothering you.

 

[Corpcleg]

Hi Karj
Sorry for late reply ,i get my LDN in Quinns in Gort Galway ,they post it up every month,,it has correct recommended compound also,,

I have had a development also my Seton which has been in 2yrs fell out last week,,i felt it was coming,,too early to say but it doesnt feel that i have an abscess so fingers crossed will update

all the best with LDN and remember the worst can happen is it wont work ,,its harmless ,,for me it has been 10times more effective than REM so far,,long may it continue

 

[babs1234]

my son has had crohns since he was 13. now 22. he just started LDN about 2 weeks ago. doc did a stool test and his calprotectin and lactoferrin is extremely high.

 

[kimmidwife]

Babs,
It takes six weeks to start seeing a decrease in fecal calp and labs. All meds take time. Two weeks is not really enough time for any med to kick in.

 

[Corpcleg]

quick update hope all is well with you folks

I have been to hospital and the result of my scope were excellent only minor scar tissue also so far it appears my fistula looks to be clearing ,,(fingers xxd ) not definitive but seton fell out about 6 weeks ago and i havent had any bad pain or signs of abscess

I know its a good complaint to have but i am letting my diet go to pot as I can now eat nearly anything without issue, I wil have to get more disciplined as i could end up with some medical issue other then crohn's related to poor diet,,

LDN is working extremely well for me the hospital are begrudgingly having to admit as such (wharped ) I thought it was about making people well !!!

I know this disease can go in /out of remission but i can only say what my body is telling me and that is my gut is better than it had been even years before i got diagnosed since i went on LDN

I will try to keep you informed i am on waiting list for MRI to check for fistula in case could be a while though

All the best
Cleg

 

[kimmidwife]

Cleg,Thanks for the great update! It is good to hear success stories!
My older daughter maintained remission for just under two years on LDN then it stopped working for her. Now we are looking into LDN for my younger daughter who was diagnosed in December with Crohn's.

 

[Corpcleg]

Hi Kim
I am sorry to hear it stopped working for your daughter I hope they are both doing well, I think we are all just trying to buy remission time with this disease and I am glad you and your daughters had access to LDN which a lot CD sufferers find it hard to get,,

I was told be a senior doctor over here that I would be on Rem for the rest of my life,, arrogance and ignorance are a nasty mix ,,I believe everybody should have the option to at least try LDN as a first line (i doubt Johnson &Johnson would agree) as I say about LDN the worst it will do is not work,,

I will keep the forum updated hopefully with positive news when i can

All the best and thanks for the goodwill
Cleg

 

[irishgal]

Kim and Corp - you both may want to consider AMAT plus LDN as a combo. They theory is sound, especially iif you have positive human MAP results in hand from Otakaro. I have found excellent success with the combo. After 25 years of disease, my CD was spiralling out of control. I had used up all traditional treatment options, so I took a flyer on AMAT. Like you said, the worst if could do it not work! Luckily, it worked spectacularly and I was in full remission in 6 weeks, with full HEALING of my mucosa in 6-8 months.

In any case, research is shifting toward pathogen involvement in CD anyway. It's also the inability of the immune system to clear intracellular infections due to genetic SNP mutations. AMAT will kill the existing hMAP (or that's the hope) and then LDN tries to streamline your immune system to make it "see" the hiding MAP and work correctly. The combo hits both sides of the issue. In treatment naive patients, AMAT is needed for a lot less time to achive the same results-like only 6 months or so. Just something to consider.

 

[kimmidwife]

What is Amat?

 

[Clash]

It's anti-map therapy, I believe. A cocktail of generally 3 antibiotics for long term.

There are a few threads in treatment about it if you want to browse them.

 

[irishgal]

What is Amat?

Atypical Mycobacterial Antibiotic Therapy - all thr resources on this are on the website listed in my signature. Just another option for your to consider! Options are always good with this disease.

 

[kimmidwife]

We started my little one on LDN Friday. Her headaches have been getting worse but I know that LDN Can cause headaches. We started her on 2.5 and are supposed to slowly go up to 4.5mg.
Tonight was a bad night. She had a terrible headaches and stomach ache and vomited several times. She is feeling a little better now.
I think it might partly be from the taste of the LDN as we are still having to open the capsules for her. We have got to get her to start swallowing pills.

 

[Cat-a-Tonic]

Hi everybody! It sounds like I'll be starting LDN soon. I'm still technically undiagnosed - it's almost certainly some type of IBD, but they can't say for sure which one. My GI therefore has been hesitant to treat me with anything like immunosuppressants or biologics. I'm currently on pred (right now tapering down from 20 mg) and Lialda. I had a terrible flare that started in July - Entocort didn't help, and by late August I was hospitalized. Put on IV steroids for a bit, then pred. I clearly need a better maintenance med than Lialda, though, because it wasn't enough to stop this flare from happening (it's been my only maintenance med for several years now). So with my limited options, I looked into LDN and it sounds really promising to me. My GI looked into it too and he's comfortable with the relatively low risk of side effects and the potential for it to help me. So we've agreed that's the next step for me.

Any advice for me? I think my GI said we're going to start at a really low dose and then I will gradually work my way up to 4.5 mg. That seems to be the typical way of doing things, right?

 

[Jmrogers4]

My son started off at the 4.5mg with no issues but I know many have built up to the 4.5mg. I will say to be patient, it took a while to see steady results. I think the big reason we stopped was the c-diff tipped him into a flare and we just didn't have the time to wait for it to build back up and work again since we were at such a critical time in his growth and development

 

[Cat-a-Tonic]

Well, I'm good at being patient. My GI is still working out the details of how to prescribe LDN to me. I'm apparently his first patient ever on LDN so it's a bit of a learning curve for him. He emailed me a couple days ago to say he's working on it. Hopefully very soon I'll be starting LDN!

 

[JDTM]

Awesome news Cat! Excited to see how you do on it.

 

[Cat-a-Tonic]

Thanks Jesse! I'm excited and hopeful. Will keep you guys posted once I finally do start LDN.

 

[Cat-a-Tonic]

All right, here goes nothing! I got the call that my GI finally sent the prescription over to the compounding pharmacy. I'm going over there first thing tomorrow to pick up my LDN. It sounds like I'm going to be starting at 2 mg, and if that goes okay then I'll move up to the standard 4.5 mg dose. Wish me luck! I'm excited!

 

[Cat-a-Tonic]

So, question - how bad is it to be on pred and LDN at the same time? I'm tapering off of pred, I'm down to 10 mg. Are they going to interfere with each other?

Edited: I did some googling and it sounds like it should be okay. Some sources are saying that with IBD, 10 mg of pred or lower is fine with LDN, and for maximum benefit I should take my pred first thing in the morning (which I already do) and take my LDN at bedtime. So I'm going to do that.

 

[JDTM]

That's what I've read as well. You should be good.

 

[Cat-a-Tonic]

Thanks, that's a relief. I just put in a call to the compounding pharmacy to make sure everything's all set for me to pick up my LDN tomorrow morning, they're checking to be sure and are going to call me back soon. If all goes to plan I will start LDN tomorrow at bedtime.

I'm seriously excited about this. I've been wanting to try LDN for awhile now and I really hope it's the answer to long-term remission for me. So far my longest remission was 2 years, and it ended when they stopped making regular Asacol in the US. My GI tried me on Asacol HD, but my body couldn't break down those big horse tablets, and I fell out of remission at that time and have been more or less struggling ever since. This year has been really stressful (my grandpa died) which put me into a bad flare, hence the pred. I'd really love to get back to remission! So I'm very hopeful for LDN.

 

[JDTM]

I wish you the best of luck! Just be aware that it takes time (or it did for me, anyway). Not the most rapid-acting medication out there, but the side effect profile is really low. Aside from a couple of weird/vivid dreams, that was basically it for me.

 

[Jmrogers4]

How long are you still on pred? It should hopefully help keep you in a good spot while LDN does its magic.
Jack's GI told us at the time that the 10mg of pred was at that level because that level wouldn't interfere with study findings.
We did do a burst full dose pred while on LDN with no issues.

 

[Cat-a-Tonic]

Jacqui, I'm probably going to be on pred for about another 10ish weeks. The plan is for me to taper by 1 mg per week. I have a hard time getting below 10 mg without issues, so I'm taking it very slowly. But hopefully by the time I'm finally off of pred, the LDN will have kicked in.

Jesse, yeah, I've read that it can take weeks or even months to fully kick in, so I'm prepared to be patient. I've heard about having weird dreams, too, especially when first starting LDN, so I'm also prepared to deal with that.

 

[Cat-a-Tonic]

It's officially a go! The pharmacy called to confirm that my prescription will be ready tomorrow morning. Yay!

 

[RNGirl]

Best of luck to you Cat. I'm impressed with your doc. I mentioned LDN to my doc and he went nuts. Glad he's retiring. Hope this does the trick for you! Take care

 

[Cat-a-Tonic]

Thanks RNGirl! Hopefully once your doctor retires, you can find one who is more open to the idea of LDN. I don't think my GI had even heard of LDN before, but I gave him some printouts of some of the studies they've done on it, and he then did a bunch of reading on his own as well (he's very thorough). He was satisfied with the studies he read and agreed with me that it's low risk and potentially high reward, so he was okay with me trying it. I picked up my prescription today and take my first dose at bedtime tonight. I'm really excited!

 

[RNGirl]

Sweet dreams Cat!!

 

[Cat-a-Tonic]

So far so good - I didn't even have vivid dreams last night (I only had one dream that I recall - the weather report said we'd get a lot of snow overnight, but in my dream I woke up and there was no snow and it was somehow springtime, not a very strange dream and actually quite nice, ha ha). They told me at the compounding pharmacy that I might have vivid dreams for the first week or so, but they did also say that everyone responds a little differently to LDN. So maybe I won't have vivid dreams or maybe they're yet to come, not sure.

 

[kimmidwife]

Wishing you the best on it Cat!
My eight year old just moved up to 4.5mg (we started her on 2.5mg and slowly moved her up over six weeks.). So far so good. Fingers crossed for her and for you!!!

 

[Cat-a-Tonic]

Thanks, I hope your daughter does great on it! I'm really hoping for remission for myself, I hope your daughter can get into remission as well. My heart breaks for you parents, I can't even imagine an 8 year old going through this stuff. I'm 37 and can barely deal with it myself some days. So I really hope your daughter does well for a long time and can just be as normal a kid as possible and not have to deal with this crap any more than necessary. Big hugs to you and your daughter!

 

[RNGirl]

Hi Cat, how are you doing on the LDN? I saw the GI doc that replaced my old one that retired. LDN was a no go with him as well. My Naturopath feels it's effective for inflammation and has prescribed it for me. I have Hashimoto's too and she thinks it could help both autoimmune diseases. Starting super low @ 0.5mg and working up. I'm super sensitive to all meds. Any words of wisdom after being on it for a few months? Thanks much!

 

[Cat-a-Tonic]

I'm doing pretty well! I've had a few pred taper fails - apparently tapering my pred by 1 mg per week is still too much for my body, so now I'm trying to taper by 0.5 mg per week and having better success with that. I've been on LDN for a few months, and I'm feeling pretty well these days. I've been going to the gym and eating pretty well and feeling mostly human again.

I had started on 2 mg LDN and then went up to 4.5 mg, so I don't have any experience with a super low dose like you're on. The only side effects I had were a bit of difficulty sleeping at first, and also odd dreams at first (for some reason I dreamt about bees/wasps a lot!). That went away within a couple weeks. I had those side effects again when I upped the dose to 4.5 mg, but again, they didn't last too long.

As for words of wisdom - I'd say, give it plenty of time to fully kick in. I started feeling a bit better pretty quickly, but then I felt like I sort of plateaued, and then felt better again around the 3 month mark. I had read that it can take "weeks or months" to kick in, but it seems to be a bit different for everybody. For me I guess 3 months was the magic number. So be patient with it and stick with it even if it doesn't seem to be doing much at first.

Oh, and I'm sure you probably already know this, but just in case you don't - LDN is an opioid blocker, so you can't take any opioid meds while you're on LDN. Even Imodium is discouraged as that works on the opioid receptors apparently. My doctor said it can make me really sick if I were to take anything opioid while on LDN. So be careful not to take anything like that.

Good luck and I hope it works great for you!

 

[Lady Organic]

Hi guys! I have a question!!!

I am thinking of starting LDN... because soon my next option would most likely be biologics and I would prefer trying anything else before.

I have a friends who takes LDN for another condition and it helps him. He doesnt have a prescription and he orders the pills from a canadian pharmacy on the internet (the capsules come from India) They seem to be generic of Naltrexone, so not the originals... he highly trusts the pills and had the vivid dreams at the beginning. The pills are 50mg so he has to dilute them in 50ml distilled water and take 4.5ml with a syringe for each dose.
he gave me a bottle to try... Im am motivated...

My question is : are there possible negative interaction with prednisone or purinethol (6-mp/mercaptopurine) and LDN???
I am currently taking both these drugs and a bit scared for interactions... I will be on pred for about 6 weeks still. What do you think or know about the subject?

Thank you for your input

 

[Cat-a-Tonic]

Lady Organic, I'm not sure about 6MP and LDN - you should probably ask a doctor or pharmacist to be absolutely sure. I did read that you're not supposed to take a higher dose than 10 mg of pred while on LDN, and you should take LDN at bedtime and pred first thing in the morning. (That's what I did, I was at 10 mg pred when I started on LDN, and that was fine, but I've read that you shouldn't be on a higher dose of pred while on LDN, I'm not sure why that is.) And of course no opioid medications whatsoever while on LDN. But I don't know about immunosuppressants as I'm not on any myself. Maybe just ask your usual pharmacist, tell them you're thinking of adding LDN into the mix (don't let them know that you'll be mixing it yourself as they probably frown upon that) and ask if they know of any interactions with your current meds.

Also, you might want to start off at a lower dose of LDN just to make sure you respond okay to it. My GI had started me on 2 mg, and when I did fine on that dose, then he raised me up to the usual 4.5 mg dose which is what is recommended for IBD.

 

[Lady Organic]

Thanks Cat, You are so right, I will ask my pharmacist. Thank you.

 

[nogutsnoglory]

I didn't find benefit when I tried this but maybe the fillers bothered me. I am thinking of trying again at the full dose and then creating a low dose liquid version. anyone done that?

 

[RNGirl]

Sorry the pill form of LDN didn't work for you. Hope you have a good compounding pharmacy, I'm certain the correct compounding makes or breaks the success of the med. I use Community Compounding Pharmacy in Lake Oswego, Oregon. Their pharmacist "Cullin" is fantastic and takes a great deal of time counseling and explaining. He's a wealth of knowledge. I started LDN about a month ago. Started at .5mg got up to 1.5 and got really bad flu symptoms for about 4 days after taking. Went back down to 1mg and for now will stay at this dose. Yes, very low dose, but seems right for me and really starting to feel well again. Think it's helping with my Hashimoto's as well as my Crohns. Hope you find the right recipe for your needs and start to heal!! Take care.

 

[Deteoj]

Going to the local pharmacy for your low dose naltrexone is not the first or best option in my opinion. You don't want to be your local pharmacies first LDN customer. There are at least two pharmacies that have been compounding LDN for many years now and have a proven track record, use them until you get things going right for yourself and then cost reduce it by going to your local RX. But I never would switch if I had things going right. LDN at any price is still far far cheaper than the co-pays for the RX main stream stuff that was being prescribed.

 

[kimmidwife]

I wanted to update on my 8 year old. So she was doing really well but then started having a lot of stomach aches and joint pain again. Her face calp had gone down to 200 and now is up again to 785. I spoke with skips pharmacy, they are one of the experts in the use of LDN unfortunately Skip recently retired but one of his pharmacists asked me if she had maybe grown which she had an she said that might be what caused the LDN to stop working so we are upping her very slightly to 5mg. The doctor will give her until June and if we don't see improvement by the end of June he wants us to think about remicade.

 

[raechel]

I'm not new to Crohn's (10 years and every FDA approved as well as many not approved treatments later), but today was the first time a doctor recommended LDN to me. I've been researching it every since I left her office. My take aways so far are this (someone please correct anything I may be misunderstanding or interpreting wrong):

1-There have been limited studies done on LDN for Crohn's, seemingly because there just isn't enough money to be made.
2- The studies that have been done look promising
3- Most people seem to be on it along with another Crohn's led
4- side effects seem to be minimal
5- Most testimonials I've read in regards to use of this drug for Crohn's are by people with mild-moderate disease. This begs the question for me of, Is this a more mild, less aggressive treatment?
6- Many people have posted they have a problem getting their doc to prescribe this for Crohn's. Is this because it's off label so hard to get approved? Or is there another reason docs hesitate to prescribe?

My disease is out of control right now and Im excited at the prospect of a med I actually haven't tried, but concerned that maybe it hadn't been recommended because other docs thought it wasn't strong enough? I hope that is not the case. This or IVIG are the only choices I have right now and both are foreign to me. Thanks for any input.

 

[kimmidwife]

I wanted to update on my 8 year old. It has been a few weeks on the increased dose of 5mg. Her mouth sores have healed up and her joint pain has been a lot better as well. Fingers crossed that she continues to do well and her next fecal calprotrectin is decreased.

 

[Friendship]

I would like to join this support thread as I am on my second day of LDN. My doctor wouldn't prescribe it but told me where to get it. I ordered it online and am changing it into the liquid form to take. Starting off slowly at 1.5mg a night per doctors advice. Did the rest of you all start off slow and work your way up?

I find this very interesting as I researched LDN, provided the info to 2 general practitioners and a dermatologist who all said if they prescribed it, it would affect their license, as it is not an approved treatment. So, how does one get naltrexone without a prescription?

 

[irishgal]

Friendship - an inregrative health MD may be more receptive.

 

[Friendship]

that is a new one to me. what is an inregrative health MD and where would I find one? thanks

 

[Deteoj]

find an MD that does chelation therapy, it worked for us. I talked to the guy with all my pubmed research in hand and he agreed and we ordered it from. my son of course refused to take the treatment but i met this doctor again, about a year later, and he prescribed it for me so i could try it out. the doctor remarked that he had also been taking it himself and that he no longer had his allergy problems.

i would like to stress that getting your LDN script filled locally should not be attempted, saving money at this point should be saved for later. many have success with local pharmacies, but do you want to be their only customer, will they buy a large amount of LDN to fill your order and save it for years to fill your future orders? if it quits working will be be a change they make in compounding that they think won't affect you, etc ....

IRMAT Pharmacy in New York has, which is were we get ours. it $35 a month is what it cost us ten years ago and they have many customers.

 

[irishgal]

that is a new one to me. what is an inregrative health MD and where would I find one? thanks

Sorry - that should have read an "integrative" health MD. They are actual MDs that go to additional school for a few years after their MD to get an additional integrative health degree. It's a whole body approach that uses a lot of preventative strategies like diet and lifestyle. Sometimes LDN can be an attractive option to this group because it's such a small dose of medication which can be life changing for certain group of patients. Search google for Integrative docs in your area, and I'd suggest you try to find one who is an actual MD since they are the most reliable in my experience.

 

[Friendship]

Thank you. I cannot find any in this area. Maybe 450 miles away. What about the ones who have posted they order over the internet? One doesn't need a doctor to write a script? Anyone have info on this?

 

[Corpcleg]

Hi All
Sorry for just jumping in but just have to update,i have been so busy with work etc Always swore i would keep this forum updated as it gave me inspiration when times where bad and feelin a bit guilty for not posting more regular so sorry for that !!!

My LDN journeys is continuing unabated and i am still having great results with LDN ,,I am on no other drug at present

I try (when I am behaving) to avoid gluten,refined sugar and lactose but do cheat alot , my fistula appears to have healed up and most times i forget that i have Crohn's, I have 1 BM everymorn like clock work , ,i am back in Gym and eating (too much in fact )

I am now 1 year and 7 months since last REM infusion and I feel so much better in my general health to,, it has given me back my health,,not perfect but as good as it has been in a long time

I wish all you guys the best with LDN or whatever you try to find remission/comfort and keep up the great work, your support and knowledge really helps with a disease which medical science is struggling to explain

All the best
Cleg

 

[Friendship]

Cleg, I am seeking a source for LDN. Where can I get additional info on that?

 

[Corpcleg]

Hi Friendship
I am in Ireland and get my LDN posted up to me from
Quinns Pharmacy
Bridge Street
Gort
Co Galway
353(091) 631 272

I dont know if they will post to US as you may need irish GP prescription but you could ring and ask (you may need to drop the "0" ) hope they can assist

@raechel
This is just my opinion but i consider LDN to be a maintenance drug if you are in middle of real bad flare , I would do whatever it takes to get it down(liquid diet, steroids or whatever to get u stable ) and then go on LDN , I by no means had mild Crohn's but was not in a flare when i started LDN , my symptoms improved significantly and has stayed so for almost 2yrs, i am now looking at weight loss diet as i have put on too much now up to 14stone ,,

Also on LDN
If big Pharma got same or similar results with a money-making drug they would be handing out nobel prizes and Docs would be throwing it round like confetti , it just business IMHO

@irishgal
Glad you are doing well on Anti-Map I hope you continue to get good results I am looking at it as a possible fallback if/when LDN becomes less effective
Did you have to go for clinical trial to get it ?

Thanks
Cleg

 

[RNGirl]

Hello everyone! Wanted to start a conversation on LDN. Looks like there hasn't been any activity on this site since June. I've been on LDN since March. I'm a real lite weight when it comes to meds and started with a very very low dose. I currently take 1.5mg daily. I had my compounding pharmacy dispense an additional bottle of .5mg LDN so I can work up to a stronger dose when I feel the need. My question: how long can you be on LDN? Indefinitely, if it keeps you in remission, your feeling great and you continue to sleep well and have vivid dreams? I'm currently in remission (calprotectin 52), no symptoms, eating pretty much a regular diet except for gluten and some inflammatory foods like night shades (potatoes). I'm getting my strength back and starting to feel normal again. As far as I can tell, there seems to be no reports of long term adverse effects from the LDN. i also have Hashimotos hypothyroidism and osteoporosis. Feedback from those that have been on LDN long term would be greatly appreciated. Thank you in advance!

 

[irishgal]

I've been on 4.5 mg for around 2 and a half years now. My doctor has never said I need to go off or mentioned an end date.

 

[Corpcleg]

Hi RNGirl

The beauty of LDN is that it was passed as very safe drug in the 80s in its original dose of 50mg per day ,whereas we are only using a small amount compared to that ,

Thats the most annoying thing for me when the Medical profession will not prescribe this for people , surely this is a choice you should be free to make yourself ,because the worse that can happen is IT WONT WORK ,,:shifty-t:
It is a very safe drug compared to Rem /Humira etc

It can do no harm continue with it as long as you are in remission and good luck and fair play staying away from Gluten. I was told by a "specialist" that diet played no part in Crohn's and to "eat what i want but just keep taking the drugs(remicade)"

You would have to question the motives of some of these people

Best of luck to all

 

[Corpcleg]

PS :
Enjoy the vivid dreams , I just see it as my brain is now making big budget blockbusters with great special effects instead of home movies ::hallo3:

 

[RNGirl]

Thank you so much for the feedback. So glad it is working and hopeful for everyone else taking it as well. The dreams are amazing and interesting huh? My dreams aren't bad at all, but sometimes you wonder where this stuff comes from. Bizarre

 

[hamster139]

Just wanted to update on my LDN progress. I slowly went up to 4.5, and it seemed like it wasn't benefiting too much. I took a break, and then went to 1.5mg, and it seems like its working great, and is helping a lot with the 'brain fog'.

 

[RNGirl]

I just tried to increase from 1.5 to 2.0mg. Seemed to make me very anxious and possibly flare a bit. Only increased to 2.0mg for 2 days, but feel much better on 1.5, so guess that's where my body feels best. Per my pharmacist, it's not the increased dose, just what feels best for you. Hamster 139---thanks for sharing!

 

[hamster139]

Just a question for any LDN users here. I've been taking it for reducing brain-fog... and it works quite well. But I never really noticed any patterns with Crohn's flareups while on it. But I might be now...maybe. I havent had a flare in a while, and just took a break from LDN... and wala... I got a flareup. I'm wondering... It could be a coincidence... or maybe it helps with flareups... but only after taking it for long periods of time?

 

[spirit3]

just made app't with dr. that highly recommends me getting off azathioprine and prendisone, which make me feel terrible......side effects...!! dr. uses LDN,
going to ween off meds. with ALL the side effects and hopefully start LDN. I am willing to take chances.:sign0085:hope i made right decision.

 

[JDTM]

Hi spirit3 -- I wish you the best of luck with LDN. Keep in mind that people's experiences seem to vary; some have said they felt a difference pretty quickly, and for others it takes time. My personal experience with LDN was very gradual improvement, and it took a while to really feel significantly better. That said, the side-effects from the medication are pretty much non-existent. Maybe you'll have some vivid dreams, but that's pretty much it. Far easier on the system than prednisone or azathioprine.

Keep us posted!

 

[RNGirl]

Just checking back in. Been off line for quite some time now. I’ve been on LDN now for close to a year. I think it’s helped me significantly and I’m in remission. I also have Hashimotos and it’s lowered my Thyroid autoimmune antibodies from greater than 900 to under 400, so know my immune system is turning around. I’m going to continue with 2mg nightly. Feel blessed that it’s working and will continue indefinitely. Would love to hear from others regarding long term use and success stories. Best of luck to all!

 

[Jonny84]

Hi folks,

I have recently been taken off Inlfiximab due to the side effects and I am not on medication at the moment. I'm doing ok.

I have found a pharmacist in Scotland who will prescribe LDN for me and I am just looking for some advice and support from others that have used it.

Does it work for you? Is it an advantage that I am starting from a place where I relativity well rather than in a bad flare? how long did it take to work? Is it a long term medication?

 

[Jonny84]

One additional question - is it essential to take it in the evening? I've had serious problems over the years with sleep and I would be far, far more comfortable taking it in the morning.

 

[xs11ax]

Hi. My son has Crohn's Disease and has been taking 4.5mg LDN for about 5 weeks now. We started off low and built up to 4.5mg. Apart from the LDN and a specific diet he has had no other treatment. He has gone from watery, bloody diarrheah up to 10-14 times a day with weight loss to non bloody, normally formed stools once a day and is now gaining weight. He has had a very detailed blood test carried out through Genova Labs in London which showed a bacterial imbalance. We will be adding other supplements to his treatment such as probiotics, boswellia, CBD, vitamins, L-glutamine. He has been under the care of a private doctor in London.

My Question

Just last week he had a blood test which showed elevated liver enzymes in his blood. He was admitted to hospital for 3 days so they could monitor the liver enzymes levels. In them 3 days the liver enzymes levels improved and he has been discharged. They still want to monitor his blood once a week. While at the hospital he stopped taking LDN. Do you think it was the LDN that spiked his liver enzymes levels? LDN does come with a warning for this, but at higher dosages. What do you think? Thanks.

Btw this is in the UK so there is no charge at the hospital.

 

[Corpcleg]

Just checking folks to advise LDN is still working wonders for me 1 stool per day as regular as an atomic clock , Sorry its been so long but it is easy to forget when you are busy and Crohn's is not a real problem in my life

I hope my success will encourage others to at least try this before some of the more toxic remedies being pushed by big Pharma

@xs11ax
I dont have any advise on this however I have had no side effects from LDN except the dreams which dont mind , hope all works out for you folks

All the best
Cleg

 

[CarolinAlaska]

Hi. New here to the idea of LDN. I've seen others using it for years, but never took this path. My daughter is 20 now. She has Ehlers Danlos Syndrome, chronic joint pain issues, IBS (was diagnosed with Crohn's in Alaska, but here in IL they discounted that diagnosis and she's not been treated for Crohn's since 10-2017). In the past 6 months she developed a fistula, fights with alternating diarrhea and constipation, chronic GI pain, etc. Sed rate, CRP, and fecal calprotectin all normal, so they don't want to scope her again (last scope summer 2017). She also has allergies, asthma, epilepsy (controlled on low-dose dilantin and CBD oil), and POTS syndrome that she controls on salt tabs and lots of Gatorade. She is still dysfunctional due to her pain and having to stay near a toilet. She works 1-3 days a week doing housekeeping at a camp, and pays dearly to do it with pain following. I'm starting to wonder if LDN might be the miracle cure for her. Has anyone used it together with CBD oil? It seems many who tried it when this thread was really active had good results at first, but didn't last. Maybe this isn't active because either it worked and you are doing well or it didn't work and you have moved on. Is anyone still around to get support here?