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


 
05-04-2013, 03:32 PM   #61
jazmac
 
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No prob, I will pm the details to you.
05-08-2013, 02:41 PM   #62
Laura44
 
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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!
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LDN 3 mg
05-09-2013, 04:11 PM   #63
LaLaNapa
 
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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
05-15-2013, 11:28 AM   #64
Farmwife
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Can some one tell me how ofter you have to have labs done when your on LDN? Plus what labs get drawn?

Thank You!
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
05-15-2013, 11:44 AM   #65
Jmrogers4
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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
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
05-15-2013, 04:17 PM   #66
Farmwife
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Thanks
05-17-2013, 07:49 PM   #67
Farmwife
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Grace started LDN yesterday. YA!!!!

How long did it take for y'all to notice a change?


THANKS
05-18-2013, 09:00 AM   #68
lisakuney
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I will be starting LDN soon. My docs have agreed to a trial.
05-20-2013, 11:16 AM   #69
EthanClark
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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
05-20-2013, 11:41 AM   #70
Jmrogers4
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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.
05-20-2013, 12:13 PM   #71
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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!
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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
05-23-2013, 12:52 PM   #72
Coskidawg
 
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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
05-23-2013, 12:55 PM   #73
Jmrogers4
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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.
05-27-2013, 07:27 PM   #74
Farmwife
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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?
06-03-2013, 12:01 AM   #75
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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!
06-14-2013, 06:10 PM   #76
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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!
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Claire
06-14-2013, 06:18 PM   #77
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Welcome aboard Claire, hope it works well for ya! Keep us posted! :D
06-14-2013, 07:32 PM   #78
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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.
06-24-2013, 08:43 PM   #79
lisakuney
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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.
06-24-2013, 09:22 PM   #80
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Lisa, forgive me if you mentioned this earlier, but what made you opt to start at 1mg?
06-27-2013, 02:27 PM   #81
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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!!!
06-27-2013, 04:21 PM   #82
Jmrogers4
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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.
06-27-2013, 09:03 PM   #83
Farmwife
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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.
06-30-2013, 08:01 PM   #84
lisakuney
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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.
07-16-2013, 06:33 PM   #85
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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.
07-16-2013, 07:01 PM   #86
JoyceF
 
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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.
07-23-2013, 04:16 PM   #87
lisakuney
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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.
07-23-2013, 11:05 PM   #88
LittleChloe
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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.
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07-29-2013, 01:26 PM   #89
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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.
07-29-2013, 01:32 PM   #90
Jmrogers4
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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.
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