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Crohn's Disease Forum » Treatment » Low Dose Naltrexone » Low Dose Naltrexone (LDN) Support Group


 
02-24-2013, 12:50 PM   #1
Jmrogers4
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Support group for those who are already on LDN or wanting to try LDN

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02-24-2013, 04:10 PM   #2
Kev
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OK, I'll join. How?
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Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
02-24-2013, 04:30 PM   #3
Jmrogers4
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you just did Kev

Thanks for the title change David
02-24-2013, 04:47 PM   #4
xmdmom
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How will the support group work? Are parents of LDN users welcome?
02-24-2013, 05:05 PM   #5
Jmrogers4
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Well myself and LilChloe are both parents of LDN users so yes xmdmom
02-24-2013, 11:23 PM   #6
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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.
02-25-2013, 06:46 AM   #7
JDTM
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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.
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Hi, I'm Jesse!

Current meds:
Lialda (4.8g)
fluoxetine (40mg)
naltrexone (4.5mg)

Previous meds:
Dexilant (too pricey!), Xifaxan (short course), budesonide (tapered off), Pentasa (had to switch in January 2016), omeprazole

Supplements:
multivitamin
2000IU vitamin D-3

Diagnosis:
gastritis & duodenal ulcers, August 2011
Mild Crohn's in terminal ileum, February 2012
5cm of narrowing w/ no signs of active inflammation, May 2014
02-25-2013, 09:23 AM   #8
Jmrogers4
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My 13 year old son at 77 lbs takes 4.5mg nightly, seems to be doing the trick for him.
02-25-2013, 01:43 PM   #9
VICTOR
 
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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,
02-25-2013, 02:09 PM   #10
Jmrogers4
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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
02-25-2013, 06:37 PM   #11
EthanClark
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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?
02-25-2013, 06:42 PM   #12
Jmrogers4
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Jack started at 4.5Mg from day one. Capsule form though. I think there have been a few that increased gradually.
02-25-2013, 07:33 PM   #13
JDTM
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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.
02-25-2013, 07:38 PM   #14
ctrl z
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I also started at 4.5
02-25-2013, 07:52 PM   #15
EthanClark
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Thanks guys. I may up my dose a little.
02-26-2013, 09:32 AM   #16
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Hi all, I'd like to join. How do I do that?
02-26-2013, 10:41 AM   #17
JDTM
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Welcome Tracie -- you just did!
02-27-2013, 02:39 PM   #18
kromom1
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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.
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Diagnoses: Crohn's 8/07; steroid-induced diabetes 11/07; Remicade-induced Lupus 02/09, shingles 7/10, and hypothyroidism.
Medications: Entyvio, Methotrexate, prednisone, Protonix, Synthroid, fish oil, calcium, multivitamin, glimepiride. Failed Pentasa, Entocort, Humira, Imuran, 6-MP, Remicade, Tysabri, and LDN.
02-27-2013, 02:53 PM   #19
Jmrogers4
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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.
03-01-2013, 09:14 AM   #20
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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 But I am! Thanks for any words of encouragement. . . From my 'new' group!
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Bowel resection in 2006
(removed 20 cm terminal ileum and 15cm section of large Sigmoid colon due to fistula and granuloma)—On Low Dose Naltrexone, probiotics, high-potency turmeric, L-Glutamine to reduce severe flare in November, 2012....Seems to be working.
03-01-2013, 09:19 AM   #21
Dede C.
 
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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.
03-01-2013, 09:23 AM   #22
Dede C.
 
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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!
03-01-2013, 09:49 AM   #23
VICTOR
 
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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 !
03-02-2013, 10:29 AM   #24
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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 )
03-07-2013, 08:06 PM   #25
Dede C.
 
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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 . . .
03-07-2013, 08:09 PM   #26
Dede C.
 
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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 )
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!
03-08-2013, 06:14 PM   #27
Kev
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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.
03-13-2013, 04:46 PM   #28
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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
03-13-2013, 05:03 PM   #29
Jmrogers4
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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.
03-14-2013, 10:21 PM   #30
LittleChloe
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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.
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