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Low Dose Naltrexone (LDN) Support Group

Jmrogers4

Moderator
LDN Support Group Support Group

Support group for those who are already on LDN or wanting to try LDN
 
I'll join! I'm so torn whether or not I think LDN has helped yet. It's been now almost 2 months, a little less, with a week off in the beginning when I was in the hospital.

My symptoms got bad there last week, but now seem to be tapering off a little (although I'm still have much more pain than usual), and I just started SCD again too a few days ago.

Part of me is still wondering if I'm not getting it right. Maybe the dose is too high? 4.5? Maybe they didn't compound it right? I asked them if they had experience and they said yes (local), but you never know. The first three weeks I was making it myself and I know the dosing couldn't have been uniform on that. I have yet to have any vivid dreams, or any effect at all (no more energy) except a slight worsening of symptoms.

I'm going to get a lower prescription (3? 3.5? What do ya'll think?) and send this one to Skipp's.
 

JDTM

OMG LDN BBQ
I wish I could offer some insight here, as I'm still unclear on the dosing thing. 4.5mg seems to work for me thus far, but at 200 pounds, I'm guessing that I'm probably twice your weight. I'm interested to hear from other people on this.
 
My 16 y/old is taking 4.5 mg for 15 weeks, he is ok,
his CRP level and Sed Rate level went down in January but in February jumped
up again/ Sed Rate to 20 and CRP to 4,5 ; his doctor is so against LDN, we have to follow up with him in two weeks and we are sooo nervous,
yesterday Victor wasn't feeling so good, he is better today,
we have to go for his blood check before our app 03.08.13, we will see
what's next,
 

Jmrogers4

Moderator
Hope he gets good results Victor. Jack's were the best they have ever been when he had labs at the beginning of the month. ESR 7 a year ago it was 13 and it was 10 at the start of LDN and CRP <.5 which is the same as when he started LDN.
Remember you can still have bad days on LDN, Jack has a few here and there, usually if he is fighting a bug or has a lot more stress then usual but they seem to be fewer on the LDN and not as bad.
Keep us posted
 
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?
 

Jmrogers4

Moderator
Jack started at 4.5Mg from day one. Capsule form though. I think there have been a few that increased gradually.
 

JDTM

OMG LDN BBQ
Same here -- started at 4.5mg right off the bat. I've heard of people starting at lower doses and working their way up, though.
 
Another new member here! I started LDN two weeks ago. No results yet, but very hopeful! Oh, and I'm taking 4.5 mg also.
 

Jmrogers4

Moderator
Hi Lisa,
Welcome to the club :) I just answered you in another post. It took a few months for us to really see a big difference. First month was the hardest and just seemed to get better from there.
 
I am so glad to have found this group! First of all, this forum is amazing....second, I feel much more supported now, since starting LDN treatment was a bit scary for me. Been on 3mg since December 7, 2012. I'm also taking L-Glutamine, probiotics, and high potency turmeric (curcumin). So far so good, and no side effects. What do Elle think? Is this a good dose? I told me GI I was starting this, and he was not impressed :boring: But I am! Thanks for any words of encouragement. . . From my 'new' group!
 
My 16 y/old is taking 4.5 mg for 15 weeks, he is ok,
his CRP level and Sed Rate level went down in January but in February jumped
up again/ Sed Rate to 20 and CRP to 4,5 ; his doctor is so against LDN, we have to follow up with him in two weeks and we are sooo nervous,
yesterday Victor wasn't feeling so good, he is better today,
we have to go for his blood check before our app 03.08.13, we will see
what's next,
Oh, sorry to hear this! Can you tell me what CRP and Sed Rate mean? Is he doing a lot of other supportive things, like diet-lifestyle? Keep me posted! I added L-Glutamine, and other supplements recommended by my naturopath.
 
I'll join! I'm so torn whether or not I think LDN has helped yet. It's been now almost 2 months, a little less, with a week off in the beginning when I was in the hospital.

My symptoms got bad there last week, but now seem to be tapering off a little (although I'm still have much more pain than usual), and I just started SCD again too a few days ago.

Part of me is still wondering if I'm not getting it right. Maybe the dose is too high? 4.5? Maybe they didn't compound it right? I asked them if they had experience and they said yes (local), but you never know. The first three weeks I was making it myself and I know the dosing couldn't have been uniform on that. I have yet to have any vivid dreams, or any effect at all (no more energy) except a slight worsening of symptoms.

I'm going to get a lower prescription (3? 3.5? What do ya'll think?) and send this one to Skipp's.
Sarah, sounds very good! My dose is 3mg, and I also take Glutamine....seems to be working, but (as you know from this forum) everyone is different. Are you taking a good probiotic? Keep us posted.... And hang in there!
 
Dede, OMG we have the same dog, is it chiweenie ? so cute,
Victor feels better now:)
ESR (erythrocyte sedimentation rate) or just "sedrate" and CRP (C-reactive protein) are common blood tests often ordered for Crohn's to check inflammantion,
He is taking also Vit-D, folic acid, probiotics, I would like to add turmeric curcumin - I am afraid this will hurt his stomach, what do you think ?
His diet is not so good because he is very picky eater,
Appreciate your respond !
 
Hi all - Alex got to come home from hospital last night. YEAH! He has consult appt. for gall bladder removal 3/12 and they will schedule the surgery date then. He is starting back on the 4.5mg LDN tonight until about 3 days before surgery in case he needs pain meds. He is feeling sooo much better now that he is home. Thanks for all your prayers.

KROMOM1 - I saw in your previous meds and current that you ended up with Thyroid from the Remicade and now take Synthroid. I'm not sure where I read it because I have read so much since Alex was diagnosed w/Crohn's in 12/12...but I am certain that I saw where LDN is actually being used by some that have thyroid disease. I personally have hypothyroidism and take Synthroid too. Be sure that the doctor takes blood from you more often since you're taking LDN as it has been shown to cause improvement with thyroid disease and it is dangerous to take too much synthroid (bone loss/heart problems). Also, my son started at 1.5mg for 5 days then went to 3.0 for 3 days and then on to 4.5mg since then. He had difficulty sleeping for about a week, but that went away as with most. He really wasn't on it long enough at the 4.5mg dose, when last Monday we rushed to ER and found out that he had Pancreatitis due to gall bladder sludge/stones. Good luck and watch that thyroid.

Glad to hear Victor is doing better!

Dede C - How many mg of the L-Glutamine are you taking each day?

Before the ER trip last week, Alex was taking:
5000 units Vit D
Vit B complex
Fish Oil - 1200mg w/360 mg Omega-3
Food Enzymes (which I'm not so sure didn't contribute to/worsen Pancreatitis)
Probiotic Eleven
Pantoprazole 40mg
Pentasa 2000mg/day

So good to be home :eek:)
 
Dede, OMG we have the same dog, is it chiweenie ? so cute,
Victor feels better now:)
ESR (erythrocyte sedimentation rate) or just "sedrate" and CRP (C-reactive protein) are common blood tests often ordered for Crohn's to check inflammantion,
He is taking also Vit-D, folic acid, probiotics, I would like to add turmeric curcumin - I am afraid this will hurt his stomach, what do you think ?
His diet is not so good because he is very picky eater,
Appreciate your respond !
She is a pit bull/lab mix... much bigger now!
Re. turmeric/curcumin... I am not having any problems with that at all! well, maybe just a bit of gas :) Everything else he is taking sounds good! I think the L-glutamine is really good for us Crohnies . . .
 
Hi all - Alex got to come home from hospital last night. YEAH! He has consult appt. for gall bladder removal 3/12 and they will schedule the surgery date then. He is starting back on the 4.5mg LDN tonight until about 3 days before surgery in case he needs pain meds. He is feeling sooo much better now that he is home. Thanks for all your prayers.

KROMOM1 - I saw in your previous meds and current that you ended up with Thyroid from the Remicade and now take Synthroid. I'm not sure where I read it because I have read so much since Alex was diagnosed w/Crohn's in 12/12...but I am certain that I saw where LDN is actually being used by some that have thyroid disease. I personally have hypothyroidism and take Synthroid too. Be sure that the doctor takes blood from you more often since you're taking LDN as it has been shown to cause improvement with thyroid disease and it is dangerous to take too much synthroid (bone loss/heart problems). Also, my son started at 1.5mg for 5 days then went to 3.0 for 3 days and then on to 4.5mg since then. He had difficulty sleeping for about a week, but that went away as with most. He really wasn't on it long enough at the 4.5mg dose, when last Monday we rushed to ER and found out that he had Pancreatitis due to gall bladder sludge/stones. Good luck and watch that thyroid.

Glad to hear Victor is doing better!

Dede C - How many mg of the L-Glutamine are you taking each day?

Before the ER trip last week, Alex was taking:
5000 units Vit D
Vit B complex
Fish Oil - 1200mg w/360 mg Omega-3
Food Enzymes (which I'm not so sure didn't contribute to/worsen Pancreatitis)
Probiotic Eleven
Pantoprazole 40mg
Pentasa 2000mg/day

So good to be home :eek:)
TracieD—hope Alex is doing okay?!! Give him a big hug. I am taking 1,000 mg of L-Glutamine daily ON AN EMPTY STOMACH. For probiotics, I take first thing in the morning, on an empty stomach also. Oh, I use the powder b/c it gets the best action.... 1/4 teaspoon (or sometimes 1 teaspoon, depends on whose brand) mixed with water.
Keep us posted!
 

Kev

Senior Member
I started (and stayed) at 4.5mg as per the original study. Taken every nite since Nov 07. Only side effect ever was vivid dreams (short lived). I understand there is a weight based formula... I believe it was intro'ed for pediatric patients. I don't know the formula/ratio. I'd hazard a guess that, if one wasn't of very small stature, 4.5 mg would work on any adult.
 
Hi all--I'm new to this forum--my first post! I'm hoping some of you can help me answer some questions I have. Here's some background info:

I started taking 4.5mg of LDN about 6 1/2 weeks ago. I was diagnosed with Crohn's in June 2005, and for a few years had success getting flares under control using Entocort and Flagyl, and giving up gluten/soy, with no meds in between flares.

Then last Nov., while taking Entocort, Flagyl, and 1 hydrocortisone suppository/day, I started having a bad flare. My dr switched the Entorcort to Prednisone (keeping the other meds stable) but no change in my symptoms. I was having up to a dozen painful, bloody/mucousy BM's/day, joint pain, exhaustion...The morning after taking my first dose of LDN, I woke up feeling human again. No joint pain, had energy for the first time in weeks, fewer BM's. There was still blood/mucous in my BM's but without the pain/cramping/urgency.

The problem is, it's been 6 1/2 weeks on LDN, and my symptoms are still the same as the day after I started it. I'm so grateful to the LDN for making me functional and getting rid of the joint pain, cramping, extreme urgency of BM's...but I'm clearly not in remission. I still have blood and mucous daily. I've weaned off the Prednisone (which I don't think was doing anything except giving me terrible side effects) but am still taking Flagyl and the hydrocortisone suppositories.

So I'm wondering: how long should I give the LDN to reach its maximum effect? For those of you who achieved remission with LDN, how long did it take? And has anyone taken more than the 4.5mg dose--seems that's the standard, but I'm wondering if 4.5mg helped me somewhat, maybe a higher dose would kick this flare all the way into remission? Or maybe taking it 2x/day rather than once would help?

I've also seen comments in prior threads about the reliability of the compound pharmacy. I'm going to call the pharmacy to learn more about how they compound it, and I'm wondering what are the important questions to ask? Seems like one is how fresh the medication is. I've also seen people mention that some fillers are better than others; what filler works best, and which ones should I make sure aren't used?

And are there any other questions I should be asking, or things that might influence how well the LDN works?

Whew, sorry for the long post, but thank you to anyone who can help answer my questions!! I don't know anyone who's taken LDN, and I'm only the second patient that my dr has prescribed it to, so I'm kind of flying blind :)

Christina
 

Jmrogers4

Moderator
Hi Christina and welcome.
I would give it a full 12 weeks. I think it takes a while to heal the intestines and reduce the inflammation. But I would say we saw the best improvement around the 3 month mark and have had continued improvement since then.
Here is a link to a study on whether to take am/pm (says PM is best) and best dosages (nothing under 1.5 and nothing over 5) http://www.crohnsforum.com/showthread.php?t=48587
Here is some information on compounding:
The following excerpt was taken from http://www.lowdosenaltrexone.org/ :

"Reports have been received from patients that their pharmacies have been supplying a slow-release form of naltrexone. Pharmacies should be instructed NOT to provide LDN in an "SR" or slow-release or timed-release form. Unless the low dose of naltrexone is in an unaltered form, which permits it to reach a prompt "spike" in the blood stream, its therapeutic effects may be inhibited.

Fillers. Capsules of LDN necessarily contain a substantial percentage of neutral inactive filler. Experiments by the compounding pharmacist, Dr. Skip Lenz, have demonstrated that the use of calcium carbonate as a filler WILL interfere with absorption of the LDN capsule. Therefore, it is suggested that calcium carbonate filler not be employed in compounding LDN capsules. He recommends either Avicel, lactose (if lactose intolerance is not a problem), or sucrose fillers as useful fast-release fillers.

> IMPORTANT: Make sure to fill your Rx at a compounding pharmacy that has a reputation for consistent reliability in the quality of the LDN it delivers.
The FDA has found a significant error rate in compounded prescriptions produced at randomly selected pharmacies. Dr. Bihari has reported seeing adverse effects from this problem. Please see our report, Reliability Problem With Compounding Pharmacies. Please see the above list of recommended pharmacies for some suggested sources."

http://www.lowdosenaltrexone.org/_conf2006/J_Smith.mp3

More sites: http://www.webspawner.com/users/ldnforcrohns/ http://www.ldnscience.org/ http://www.lowdosenaltrexone.org http://www.ldners.org/
My son has been on LDN for 8 months and we have seen fantastic results, healthy tissue from scopes and normal blood work. There are others here who have been on it for 5 or more years and are still feeling great.
 
Location
Ohio
Hi Christina,
My daughter saw improvements right away but it took 7 months before I would actually feel like we can say remission. She did have a few bouts with c diff that I'm certain slowed down her progress. But seriously at about 6 months she really started to become her kid self again. We also started to supplement with magnesium, zinc, and potassium, and she takes 750 mgs of curcumin. Maybe these are things you could look in to for extra help. Best wishes.
 

Jmrogers4

Moderator
My son was supposed to, but we didn't realize it until 3 months after starting LDN. We had a GI appt. where we received the Rx but Jack wasn't starting it until after camp (didn't want to mess anything up while at camp) so day we picked him up from camp we gave him the LDN that night and no more Imuran the next morning. When we went back to GI for 3 mos check up, he told us we could stop the Imuran and see how he did on LDN alone. Jack and I just looked at him and said you told us to the stop the Imuran when we started LDN. He was a little shocked and said he didn't know what he was thinking if he told us that, Jack should have stayed on the Imuran to give the LDN time to work but he was glad that we didn't have any big issues, so while we didn't stay on the Imuran, I believe you can take with LDN
 
I'm on day 6 of taking LDN and my gut is in revolt. I'm at work and am very lucky there's a bathroom close by. I don't know for sure that it's the LDN but can't think of any other change that might be the culprit.
 
No, not flu . . . it feels exactly like a flare: lower right quadrant pain, acid diarrhea, fatigue, generalized weakness. And now my bum really hurts because I had a fissure that just recently healed. Yes, am in full 'waaa' mode.
 
Hi all. I noticed this support thread and thought I'd post a little something. I have been on LDN for over 10 years but not for Crohns. I take it for MS. I just thought I'd lend my support if anything that I have learned will help anyone in their journey with this therapy.
What compelled me to write is that whenever I read someone asking what they should do as they feel it may not be working for them. My first question is always, where are you having it compounded? It is so important to have it done right and I'm just not sure that every pharmacy is aware of some things like the fillers and such. In the early going, I too had concerns with how the LDN was working as I had approached a local pharmacy who assured me that they could do what I needed. After a few months I thought, hmmmmmm...is it working? A wise forum friend told me to not mess around, just go to a compounder that has experience with it. I decided to use Skip's for several reasons. He is so well versed on the whole LDN thing and even takes it himself. He is compounding so many that he buys it in bulk to fill the prescriptions so therefore he passes the savings on to his customers....you gotta love that.
Anyway, I would be happy to answer any questions for anyone that may have any that I can answer. I attended the first ever LDN conference in NY as a patient advocate. That's how dedicated to sharing this valuable information I am.
As far as doseage, Kev is right....most adults should be fine with 4.5mg but for those that want to adjust, try 3mg if you feel that 4.5mg is just not right for you. I'm just not sure with Crohn's just when you would adjust. With MS, some can tell simply because they will have a physical sign such as spasticitity but that will not be the case with Crohn's. I think you have to let your own self be your guide somewhat. I do think that Skip starts people out at a lower dose and slowly gets them up to 4.5mg. I'm sure if you called him, he'd answer your questions, he's a nice helpful man and very smart.
Good luck to all and I'm sure glad that you found your way to this remarkable find.
 
Last edited by a moderator:
Hi guys I just joined this support group.
As we speak I'm waiting for a call from Grace's GP and will start the ball rolling for LDN.

Grace is getting ill so the GI wanted to try budesonide. Can she take both at the same time?
 

Jmrogers4

Moderator
Yes she can FW. Welcome to the club! Hope Princess Tinkerbell Grace does as well on it as Jack is doing.
GI appt today for check in have to say we are both actually excited for the appt. today. Jack can't wait to show him his "belly"
 

JDTM

OMG LDN BBQ
I'm pretty sure you can. If I flared again, I'd probably hop back on budesonide first in an attempt to knock down the inflammation (with my GI's go-ahead, of course); I also think that ctrl z is currently on both. I wish you the best of luck!!
 
:lol2:Ha/ha:lol2:

Tell Jack to enjoy that feeling of showing off the belly because it's not quite the same when your older.:yfaint:
For me I try to hide it!:yfaint:
 
When leah stated ldn (1.5mg) she was on pred, we did not start ldn until she was down to 10mg pred. Months later while off pred and up to 4.5 mg Ldn Leah had a flare and was hospitalized and was back on 40 mg prednisone, we continued the Ldn while on the preds the entire time.
 
leahsmom how old is your girl?

That's good to know about the pred.
My worry is she was on pred for 3 months. So putting her on budesonide which is suppose to be milder than pred will not work because it will be to mild. KWIM
 

Jmrogers4

Moderator
FW - I think the budesonide releases differently then the pred as the budesonide releases in the GI tract, targeting that area where pred is a whole body drug. I'm sure there are lots out there that know more then I but she may benefit from just targeting her GI track instead of he whole body.
 
Hi jesse or jdtm. My name is holly i live in Rhode Island too. Could you please tell me a doctor i could go to that prescribes ldn? Thank you.
 
My son is on budesonide and ldn. Recently, he also started vit d3 5000iu. He is currently doing well, and gaining weight. His Crohn's has been in his ileum.
 
Well were all set up for LDN.
I talked to the Pharmacist and he said he does this drug for a few other people and he even uses the correct fillers.
Grace's GP took the paper work and will be researching it over the next few day.
I will of course be asking the GI about his take on LDN
BUT I as the mother have to right to choose.

Grace will probably start LDN after her surgery for a g-tube placement.
 
Quick update: Am feeling better than ever, better than I have in years. This is over two months on LDN. No diarrhea in the past 3-4 weeks, and now actually looking to *add* fibre to diet instead of trying to keep it minimal. *Happy dance*
 
LDN was a miracle for me 3.5mg (I'm only about 50kg 37yo). I am not really ever on here as I am off enjoying all the things I missed when I was stuck at home with severe crohns.

After my 2nd resection I still felt at wits end...severe pain, diarrhea, bloating, extreme gas. I had tried all drugs including Humira (which just gave me severe lip sores). My gastro was very reluctant about LDN, he couldn't see it helping. I ended up doing all the research myself and going to tell not ask for LDN script.
The medicine is expensive but my private health pays 80% of it under pharmeauciticals.

I never renewed my script this time, after 2 years I don't seem to need it but it was amazing. From the first day I took it the gas and diarrhea reduced dramitically.

I found after a while if I stopped it for about a week and then started again it seemed to reboot and work better.

I mainly want to say dont give up. I was not scared of dying but scared of living with horrid symptoms for the rest of my life.

I am not disease free, I need iron and albimum infusions every few months, I take small dose of Thioguanine, I have a narrowed throat and swallowing issues.

BUT I study full time, work part time, have a stand up paddleboard which is used almost daly, I have a fantastic social life.

So hang in there, I really hope LDN works for you.
 
I have been on LDN for 6 months now. I started on 1.5 mg and saw immediate results. I gradually moved up to 4.5 mg (the dr who prescribed was adament)...and honestly did not feel as well. I have moved back to 3 mg now (about 2 weeks) and feel better. Just wondering how others are doing on LDN...what dose you are taking? any specific anti inflam supps that your dr recommended? Thanks so much for the support!
 
Hi Laura:

Glad to hear LDN is working for you! Me, too. Just in my 4th month now. I started at 4.5mg and it took nearly 3 months for me to see a difference. But I sure do now: greater tolerance of food, no bloating, and far less sleep required to keep me functioning.

Besides my regular GI doctor, who prescribed the LDN, I also see a licensed Naturopathic Doctor. He has me also taking the following:

Thorne Basic Nutrients #3
Thorne B Complex #6 (but my levels went off the chart so I am probably going to eliminate it and just stick with the multivit above)
Zyflamend (New Chapter)
N-Acetyl Cysteine 600mg x2
Selenomethionine 200 mg x2
Zinc Citrate 30mg x2
Buffered Vitamin C (powder)
Vitamin D (currently 4000 mg)
Fish Oil (DHA EPA - I just use a Costco brand)
Probiotic (6-10 billion CFU) - TruNature, from Costco also

I was also using Thorne's Blue Heron (fiber blend). I was really concerned about the idea of taking it, so scared of fiber! But that was what finally stopped the regular diarrhea that I'd had for years. Now with changes in my diet (Paleo), and inactive disease in my colon now, I don't need the fiber anymore. (I hate taking pills.)

Cheers!
LaLa
 

Jmrogers4

Moderator
FW I would recommend them every 3 months our so at first or the FC test, you want to make sure you are going in the right direction. After several normal you could extend the time, we are at 6 months right now but if Jacks next one in July comes back normal (he is also having FC done then) we elk go to once a year
 
Farmwife-Most say that it can take up to a few months to show a difference. I noticed quite a change about a month into it but just recently had a pretty bad few weeks. Some say it can take 6 months to a year to see the full effects. As with a ll medications I belive it depneds on the individual person as our bodies are all different. Good Luck Grace :ghug:
 

Jmrogers4

Moderator
Jack was good for the first 2 weeks then when through a flare for the next 2 weeks and slowly started to improve for the next 2 months but it was probably at the 6 month mark that we really noticed a complete turn around. As you know at that point we also added supplemental nutrition and I think the LDN had healed him enough on the inside to really get the full effect from the extra nutrition, he is still holding steady at 100 pounds (from 77) and is nearly 5'2" (from 4'11") at the start of LDN, most of that growth has occurred in the last few months. I think he will most likely pass me up by the end of the summer (I'm 5'4"). We will be 1 year as of June 30.
 

JDTM

OMG LDN BBQ
Echoing what others have said here in that I had a "mini-flare" after a few months on LDN, but things quieted down fairly promptly after a few days. Overall, I'm feeling much better than I have in the past, but it didn't happen overnight for me!
 
I think I just registered for this group. i am getting ready to fill my script of LDN for hashimotos and am wondering if I need to go through the trouble of mail ordering the script. Are local pharmacies now able to do a good job of compounding this med?
-Skidawg
 

Jmrogers4

Moderator
Depends on the pharmacy. I get my sons at a local pharmacy but gave them clear instructions on how I wanted it compounded. He will hit the year mark on June 30th and we have seen great results so I'm happy.
If you decide to go local just make sure you give them clear instruction (ie. no slow release) I sent the same to his GI as Jack was the only one of his patients doing really well on LDN and he was not aware that it needed to be compounded a certain way.
 
Just wondering if anyone noticed constipation with LDN?

Grace hasn't been able to have BM"s on her own the last 5 nights. I have to use a suppository to make anything happen. She's also on MagCal for a long time now and it has worked great...up till now.

Any thoughts?
 
It took me around 8 months to really see consistant improvements. It was on and off again untill it was finally off. I think finding the dosage "sweet spot" was important. It's 3mg a day. At 4.5 i was having flares and even eurethema on my arms and legs. It activated my immune system too much. At 3mg everything calmed down and i got better fast. Still doing good!
 
Post-op appt with a new GI today who is at a reputable hospital, has good creds, and already a few patients on LDN - willing to write me a script when my post-op-ness calms down! Yahoo! So excited that I don't need to go to some sketchy naturopath or otherwise bypass my GI and that it is maybe getting more accepted in the community! Glad to be a soon-to-be member of the group!
 
Oh that's great Claire. I would love to add this doc's name to my "LDN friendly doc's " list if possible. I do get e-mails from all around the country looking for docs that are agreeable to prescribing it. I don't ever post these names anywhere online...just answer e-mails.
I hate it when I don't have anything to offer someone so that's why I try and add whenever I can. Just PM me his/her info if you can and I'll add the name. If you are unsure just ask the doc and let them know that this is just like a referral really for them.
Thanks much and good luck to you with everything.
 
I am on my second month of Naltrexone. So far I haven't noticed much difference in fibro pain or fatigue, but I am sleeping better. I am starting to have a few intestinal symptoms which I rarely have, which is kind of weird. I am planning on staying at 1mg for another month after this, then moving up to 2mg. So far, so good, but I still hope to see less pain and fatigue soon.
 
Hello,
My daughter, 9 years old, was diagnosed with Crohn's last year. Pentasa did not work, we then tried Methotrexate (oral then switched to injection) - stopped due to side effects. They are suggesting 6MP, but I am hesitant. I have been reading more about LDN and am very interested in having her try this. I spoke to her Dr. about LDN and she said she would prescribe it, but feels it would not work and that 6MP would be in her opinion the best choice. Just want to do my research before deciding between 6MP and LDN......
Questions: For those of you with children, what were/are the main side effects. Has any one took LDN with Pentasa? What dose does your child take? My daughter is 26 kilograms, so I am assuming she would take 2.6 mg (this is based on the study with LDN done at Penn State - body weight in kg x .1mg - with a max dose of 4.5 mg).
Anything else you could add to help with with my decision making would be great. Reason I am leaning toward LDN - low side effects.
Thank you!!!
 

Jmrogers4

Moderator
My son, Jack (14 next month) will reach his 1 year anniversary on LDN at the end of this week. As far as side effects, he did not have any. Yes you can take with Pentasa, Jack did for a while but we quit the Pentasa as for us, it did not make a difference one way or the other. You can also take it with 6mp. My son was on Imuran and due to a miscommunication with his doctor we quit the Imuran when he started the LDN but were supposed to stay on it for about 3 months while LDN took effect.
Something for you to think about is that both LDN and 6MP can take several months to become effective. We had about a month and 1/2 where Jack was flaring. We did a very basic SCD/Paleo type diet during this time. If I had to do it again I would probably have gone EN (entrenal nutrition) or something else to control things until LDN started working.
Jack started at the 4.5mg but I think when he started he should have been 3.5mg based on his weight. Just remember it needs to be taken at bedtime and it needs to be quick release not slow release when compounded.
Please feel free to PM me anytime.
 
Hi Icmully and welcome.
My 4 yr old is on LDN. She takes 1.5mg at night.
We also choose this drug because of the low side effects.
Grace is still having struggles but it's only been 6 weeks. LDN can take longer to work.
I also second EEN in conjunction with LDN.
My Grace is doing both and I pray after the next scope we'll be told all looks good.

You can also PM me anytime.
 
Lisa, forgive me if you mentioned this earlier, but what made you opt to start at 1mg?
My body overreacts to normal doses of meds. Like a canary in a coal mine. It sucks. I take less than recommended doses of several of my meds. You'd think it was like drinking, where the more you weigh, the more you can drink. Sadly, no. Also, I am on many meds for various and sundry, and want to make sure they all play nicely together.
 
So glad I found this forum, great information. I've had Crohn's for almost 30 years. Had a resection in 2005 and was fine till this past winter when I got a flare.

Went on Endacort which worked but the flare popped right back. GI wants me on Humira but that seems pretty drastic and quite scary.

LDN seems like it's worth a try. Just have to convince him of this. Could be tough.

I agree with those who suggest that this drug will have a difficult time since it's too cheap for big Pharma to make a profit off of.

Giving my flare another week than headed to GI to see if he'll condone and prescribe. Thanks for all the great info here guys.
 
Hi Nick,
Well, good luck to you. I really do hate that we are at the mercy of these docs when clearly it is us that does the research these days. I have always said that the cures will be there once doctors need them for their loved ones.
Try and print out some things to take in with you. There is a lot that can be printed out at goodshape.net His wife was taking LDN for her MS and he has helped quite a few people. He is the one that informed me about it and I've been taking it for MS since 2002.
If your doc won't budge on this, let him know that you will be seeking help elsewhere. PM me with info about your location and I'll look on my list of "LDN friendly docs" list for one that may be near you. Really, any doc with a prescription pad can prescribe it.
 
I may have been impatient.

I have been having an increase in muscle and joint pain, and discussed with my GP the idea of increasing LDN from 1mg to 3mg. I reasoned that since I weigh so much, it might be ok.

After a few days on 3mg, I started having very dark thoughts and anxiety attacks.

I have stopped altogether for now. I am scared to start again on the 1mg.

Has anyone else had these sort of symptoms? My research showed that they are considered severe.

I also had dry mouth and eyes, but can live with it.
 
Location
Ohio
Chloe has not had any anxiety attacks or vivid dreams. She did have dreams initially but has adjusted to it well. Chloe takes 4.5mg and does well...no side effects. She needs sleep and we try to keep her away from pop corn but sometimes she sneaks. After 2 yrs. we're happy with LDN.
 
I'm not on LDN right now, but I'm going to approach my doctor about it, and I have a couple questions.

Did any of you get ESR and calprotectin levels checked when you first started taking LDN, and did you see any sort of improvement? I know it takes a few months to work, but is there any indication in the first few weeks? The reason I ask is that my symptoms are really mild right now, and I'd like to give my doctor (who was reluctant when I first brought it up) some way of measuring if I'm going in the right direction or not.

I initially was going to ask him if I could start 6-MP and LDN at the same time, as they both take months to work, but if there's a way to measure LDN effectiveness, I'd like to avoid the 6-MP as long as possible.
 

Jmrogers4

Moderator
We did ESR right before starting LDN and it was at 10 which is really great we did it again at 8 month mark and it was at 7! We were supposed to have it done early this month which would have been the year mark, but Jack had cellulitis and C-Diff so we thought that would skew any results and so are holding off till next appt in October baring any issues.
 
I am new to crohn's and I would say it is mostly mild and I am looking for the least toxic meds as I also have liver disease. would those in the know recommend starting with LDN?
 
We did ESR right before starting LDN and it was at 10 which is really great we did it again at 8 month mark and it was at 7! We were supposed to have it done early this month which would have been the year mark, but Jack had cellulitis and C-Diff so we thought that would skew any results and so are holding off till next appt in October baring any issues.
7 is amazing! I think the last time I got mine checked, it was 25, but I was told that wasn't too out of the ordinary for females my age. I'm sorry if you've answered this before, but did Jack notice an improvement in symptoms quickly, or was it a slow transition (the usual 12 weeks)?
 

Jmrogers4

Moderator
It was slow!! Barely anything for the first 3 months but he was in a good place to start with and Imuran had kept things under control for several years. Things improved at about 3 months and it was slow and steady from that point. 1st month was okay, I'm assuming that Imuran was still working in his system 2nd month was awful!
His GI at this point with all his tests results would not pull him off LDN if he had a flare but would see if we could control flare with Entocort, he is so impressed with all the lab results. Whereas before it seemed we were always just a half step away from Remicade. His GI always likes to plan for what ifs so there is not that panicked decision which fits my personality well.
 

Kev

Senior Member
I don't know if I'm in the know, as it were. I'm not a doctor, nor a scientist. But I 'think' this post may answer two questions in one. If a person is faced with other health issues that make the decision of what drug to take for Crohns a 'critical' decision, then my 'guess' would be to take the lowest viable dose of any of the drugs out there. When you consider that MANY doctors who have agreed to trial this LDN on patients did so as they thought the dosage so low, that even if it didn't work, it would do no harm. That is one of the considerations my GI took into account all those years ago. I don't think she is the only doctor to have expressed it that way. With LDN, the maximum dose is so low that doctors who agree aren't sweating about potential side effects or repercussions. It isn't a no brainer... you have to put some thought into what your best choice is.. but it seems logical that, when picking a drug to fight IBD, the lower the dose you can get away with, the better. (that isn't a hard/fast rule.. some things can kill in low doses, but Naltrexone HAS been tested for it's original intent at much much higher doses, OK?)

Second thought. Since it is such a low dose... just enough to trigger this rebound effect the 'experts' mention (personally, I don't comprehend it, but I know it works) you SHOULD probably expect it to take it's own sweet time to work. Least ways you won't be disappointed if it takes 12 weeks. And, who knows, you might be one of the lucky ones it works early on. But, if you are looking for an overnight eureka, then you will have to go to a high dose of some other drug. LDN is not known for being an instant fix.
 
Kev, your posts about LDN have been really informative and helpful - especially for me, being so new to all this. I'm absolutely fine with it taking awhile to start, I was just hoping that there would be some measurable improvement for my GI's sake. When I brought up LDN previously, he was worried it would delay healing if it didn't work. He'd rather I start 6-MP immediately. If there was some way he could track it's efficacy earlier on, maybe he'd be more willing to try.

I know reduction of inflammation and mucosal healing are incredibly important, especially in the beginning stage of this disease, so I understand his reluctance. He's only used LDN with one patient, and he didn't see any improvement (I don't know what dose, how long, or which pharmacy the patient used). I'm hoping to get him on the phone tomorrow to see if he's willing to try LDN - it's a much more palatable option in my mind. My gut will take time to heal, but I'd rather spend the next 3 months seeing if LDN works than spending 3 months waiting for 6-MP to.
 

Kev

Senior Member
Well, thank you for the compliment, but... ah, shucks, tweren't nuttin. I figure that my posts on here achieve a couple of things... help spread the word about a very valuable treatment for IBD.. and thereby pay forward the... good fortune.. blessing.. I recieved by learning about LDN thru this site. If it hadn't been for this site, and the link on LDN all those years ago... I HATE to think where I might be today, or in what shape I'd be in.

The adult and pediatric testing indicates that approx 9 out of 10 folks who try LDN should see improvement at 4.5mg of LDN (if compounded properly) taken at bedtime (why sleep plays a role I'm not sure, but apparently it is vital) over a 3 month interval.
So, folks who take less... for whatever reasons... probably shouldn't expect identical results.. Same goes for those who take more... (I've seen doctors discuss it has to be a low dose to work). It has to be Naltrexone, not Naltrexone SR. It has to be relatively freshly compounded (I wouldn't advise trying anything compounded over 100 days ago). And, I would advise anyone considering it to have patience, stick it out for 3 months.
If one does all that, then approx 9 times out of 10, it should work to stop your IBD. And it should do it without any life altering, life threatening side effects. But, while waiting for it to kick in... there is a chance you will get worse before you get better. And there are no guarrantees you won't be in the 10% +/- for whom LDN doesn't work. That is a very real risk... but, one faces the same risk with any potential medicine/treatment. No one offers a treatment with 100% success rate. LDN comes the closest to any I know.
 

Kev

Senior Member
I never heard any more on it... I figure perhaps the time zone differences, combined with my worklife.... if you can call it a life???... nixed the idea on their end. Probably for the best (at the moment).. Thanks to damage from being on pred for a year, a month ago I had all my teeth surgically removed. It will be another 6 - 8 weeks before I will be fitted with dentures. In the interim, my enunciation, pronunciation, is really 'dreadful'.
 
We're thinking about putting Grace on Budesonide for a short while.

How much (or little) can she be on and LDN still be affective?

Have any of you done both? Did it work?

THANKS
 

JDTM

OMG LDN BBQ
I've done both, and to be honest, I don't think it had any effect on the LDN. I went on a short course of budesonide to get out of a mini-flare, and it seemed to do the trick, and I stayed on LDN the whole time. Hope this helps somewhat!
 
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