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


 
03-14-2013, 10:46 PM   #31
rollinstone
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Hey guys, just wondering if anyone has used LDN alongside other meds like imuran?
03-15-2013, 09:31 AM   #32
Jmrogers4
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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
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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
03-16-2013, 07:27 AM   #33
Dobermonster
 
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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.
03-16-2013, 07:54 AM   #34
rollinstone
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That sucks dober, hopefully it clears up soon, maybe it's a flu or something coming on?
03-16-2013, 10:02 AM   #35
Dobermonster
 
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Location: Kelowna, British Columbia

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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.
03-22-2013, 09:28 PM   #36
Laura44
 
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How do I join?? I have been taking 3 mg for 19 weeks.
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LDN 3 mg
03-22-2013, 09:29 PM   #37
Laura44
 
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Join Date: Jan 2013
Location: Arkansas

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How do I join? 19 weeks on LDN
03-22-2013, 09:38 PM   #38
Laura44
 
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Join Date: Jan 2013
Location: Arkansas

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I will join! How?
03-22-2013, 11:16 PM   #39
Clash
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You have joined by replying in the thread Laura44
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
03-23-2013, 10:11 AM   #40
Jmrogers4
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Thanks Clash, missed Laura's post yesterday
03-23-2013, 10:41 PM   #41
Dobermonster
 
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Hey guys, just wondering if anyone has used LDN alongside other meds like imuran?
I'm taking LDN with methotrexate. I think my GE's idea was that the methotrexate might be doing some good, and it doesn't hurt to use the two together.
03-24-2013, 12:44 AM   #42
rollinstone
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Thanks Dober, how you doing ATM? Weren't so good last time you posted? Hope you've turned a corner and are feeling better
03-24-2013, 03:20 AM   #43
Dobermonster
 
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Not bad, thanks, Joshua. Less abdominal pain and other GI symptoms. Still tired and sleeping lots though.
03-24-2013, 10:34 PM   #44
leahsmom
 
Join Date: Jun 2012
Location: St Louis, Missouri

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Count me in, loving LDN
03-25-2013, 12:43 AM   #45
LaLaNapa
 
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Join Date: Jun 2012
Location: Yountville, California
Count me in the group, too. :-)
7 weeks 2 days in to LDN. Hoping for the best!!
04-01-2013, 02:07 PM   #46
JoyceF
 
Join Date: Jun 2012
Location: Chicago, Illinois

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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 Cat-a-Tonic; 04-01-2013 at 04:58 PM. Reason: Removed email address
04-11-2013, 09:40 AM   #47
Farmwife
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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?
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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
04-11-2013, 09:43 AM   #48
Jmrogers4
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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"
04-11-2013, 09:44 AM   #49
JDTM
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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!!
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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
04-11-2013, 09:46 AM   #50
Farmwife
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Ha/ha

Tell Jack to enjoy that feeling of showing off the belly because it's not quite the same when your older.
For me I try to hide it!
04-11-2013, 09:50 AM   #51
leahsmom
 
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Location: St Louis, Missouri

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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.
04-11-2013, 09:55 AM   #52
Farmwife
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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
04-11-2013, 11:05 AM   #53
Jmrogers4
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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.
04-12-2013, 08:59 AM   #54
leahsmom
 
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Hi Farmwife, Leah is 15.
04-17-2013, 01:44 AM   #55
Hbuz
 
Join Date: Apr 2013
Location: Cranston, Rhode Island

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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.
04-17-2013, 05:37 AM   #56
xmdmom
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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.
04-17-2013, 12:06 PM   #57
Farmwife
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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.
05-04-2013, 04:14 AM   #58
Dobermonster
 
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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*
05-04-2013, 05:11 AM   #59
jazmac
 
Join Date: Aug 2010
Location: Queensland, Australia

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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.
05-04-2013, 10:10 AM   #60
rollinstone
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Jaz I am in qld, could you pm the docs name that prescribed LDN for you? Only if your comfortable w it
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