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01-20-2011, 02:55 AM   #1
JJOM
 
Join Date: Jan 2011

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LDN Story: w/6mp (Update: 03/07/2013)

UPDATE: SEE 05/27/2012 POST

UPDATE 2: SEE 03/07/2013 POST

My first crohnsforum post: Question about LDN and 6MP

>DX crohns/colitis. If it helps: I have not show crohns in my small intestine, but I did have a couple of episodes with mouth ulcers<

I have been on 6MP (Mercaptopurine) for about 8 years (currently 100mg). It never put me into remission, but the DOCS seem to feel it is helpful.

Reason for LDN question: I have recently failed all of the biologics (Rem, Humira, Cimza). And do not have much more to turn to.

After reading as much as I can, it seems that some feel the LDN will not work with the 6MP.

My GI is now recommending surgery (either colon resection or removal) I plan to ask my GI to give me LDN, but I think he will be very reluctant to change my 6MP. I too would prefer not to mess with it.

Has anyone tried LDN, and had it not work, until they were off 6MP?

Or, is it that 6MP can affect the LDN's efficacy, yet it still works over time or at higher dosage?

Has anyone had success with LDN while on their full dose of 6MP (or the like)?

Any guidance will be appreciated.

Thank You.

Last edited by JJOM; 03-07-2013 at 03:49 PM. Reason: update
02-28-2011, 07:29 PM   #2
JJOM
 
Join Date: Jan 2011

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Update:

About 5 weeks ago I presented the idea of trying LDN to my GI, and at first he said, "NO".

I then handed him the study (and an abstract from the recent unpublished study). He said he would look into it, but then clarified he 'heard' it wasn't working out that well (from a recent conference).

He then told me his immediate hesitation was because he had previously bad experiences with the full dose Naltrexone (non-GI related), and that because I had shown signs of improvement he wanted me to continue what we were doing (In December I was on the verge of surgery, potential removal of colon).

Fast forward to last week, and I spoke with him about LDN again. He immediately said, "Yes". I was happy, as I thought I was going to have to pretty much say, "I want to try it/I will try it".

Anyway, We made a change to my medication again, and he wants to do one thing at a time. He also admitted that he needed to check on dosage and protocol. So it seems that in about 5 weeks I will start LDN.

I will try to document the experience here.

I will still be on a 6MP.

Excited to give it a try.
02-28-2011, 07:41 PM   #3
Ian
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Join Date: Feb 2010
Location: London, UK
I can't give any guidance because I have no experience or knoweledge of LDN (only 6MP), But good luck with it! Really hope it works out for you
__________________
Dx Ulcerative Colitis Oct 2005 (age 19)
Dx Crohn's Colitis Feb 2010 (age 23)
Dx Indeterminate Colitis (IBD unclassified) Oct 2011 (age 25)
Dx likely Ulcerative Colitis July 2013 (age 27)

Currently taking:
6MP (75mg daily)
Asacol (3 x 800mg, twice daily)

Have taken: Humira, Infliximab (Remicade), Prednisolone, Predfoam
03-03-2011, 07:23 PM   #4
tmig89
New Member
 
Join Date: Feb 2011
I am having such an incredibly hard time trying to get any doc to prescribe me LDN!
They are all comin up with excuses time after time. Anyone have any suggestions on how to find a doctor who will write for it? Or if there is a way I can go pick it up somewhere and just pay cash? Anything, I am really desperate here. Already done like every medication and had 7 surgeries. On Prednisone, EntocortEC (double dose) and Humira with practically no results...I need something to help me!
03-04-2011, 01:48 PM   #5
JJOM
 
Join Date: Jan 2011

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Hi tmig89,

I feel your pain. I thought I was going to have to fight much harder than I did (I haven't gotten it yet, but he said he would do it next visit).

Did you bring some of the information to your Doctor(s)? Under your circumstances it is a shame that they won't give it a try.

I was prepared to 'order' Naltrexone and make it myself. I do not want to suggest that to ANYONE, but there are ways to get it online (India), and it is pretty inexpensive.
03-04-2011, 02:02 PM   #6
tmig89
New Member
 
Join Date: Feb 2011
Yeah, I'm lookin at tha right now. Diluting pills into smaller doses.
If I have to, then I have to.
03-24-2011, 03:08 PM   #7
becca38
 
Join Date: Mar 2011
Location: Idaho
tmig89 - I have not tried LDN. However I have been researching and found a couple of ways to find docs in your area that will perscribe it. Have you looked on the ldnscience.org website? There is a link to find a doc in your area. Also, the LDN site has a moderator that keeps track of docs perscribing LDN.
I am on similar meds with no improvement. LDN is looking pretty good....

Last edited by becca38; 03-24-2011 at 03:10 PM.
03-25-2011, 01:23 PM   #8
COOK620
New Member
 
Join Date: Oct 2010
Location: arlington hts, Illinois
Dear JJOM
Please let us know how you do on LDN, my daughter is going to her doc at the end of April and we may bring it up. She is on Aprisol and has had CD for over 10 yrs. Good luck to you.
03-25-2011, 06:13 PM   #9
JJOM
 
Join Date: Jan 2011

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Hi COOK620,

I will. I see my GI this Wednesday, and will hopefully get the LDN for the following week.

Because I believe I have a Candida/yeast problem, I have been 'detoxing' these last two weeks in preparation of the LDN. I think the detox itself has helped my Crohn's some, and my general well being/quality of life.

I am still debating, with myself , as to what to do with the 6MP. I am leaning towards starting the LDN and then trying to wean off the 6MP after about 10-14 days. I am not sure the 6MP help at all anyways, but I have been on it nonstop for 9-10 years.

JJOM
03-27-2011, 04:34 PM   #10
COOK620
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Join Date: Oct 2010
Location: arlington hts, Illinois
Thanks JJOM, but make sure you discuss the idea to go off your 6Mp with the doc he may need to tell you how to stop, keep us posted and good luck.
COOK620
04-05-2011, 12:06 AM   #11
JJOM
 
Join Date: Jan 2011

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Well I started LDN 4 days ago. Protocol: 1.5MG a day for a week, 3MG for a week, then the full 4.5MG.

My GI was still not thrilled about doing this (Around Christmas he was OK with major surgery though ... go figure), but regardless he wrote the script. He was very thorough, and spoke with many colleagues about doing LDN. It seems he has been burned in the past with 'trying', or experimenting with 'unproven' drugs treatments.

I asked his opinion on my coming off the 6MP, and he felt that would/could be very bad for me. Plus he wants to do one thing at a time.

As for the 6MP, I am not sure why he feels so strongly about it. I can not point to any event to which I felt the 6MP has truly helped in 9-10 years (It never put me in remission, I have gotten terrible ill while on it, but he feels I would even be worse without it).

I am going to listen to him, and stay on it. If I am still ill in a few months; I plan to remove the 6MP to see if that has interfered in some way. I hope for the 'opposite', and I am removing/lowering my 6MP because the LDN is working well...

Last edited by JJOM; 04-05-2011 at 12:20 AM.
04-06-2011, 02:00 PM   #12
COOK620
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Join Date: Oct 2010
Location: arlington hts, Illinois
Hi JJOM
I will hope this works for you, I gave my daughter GI some info on it so he could review it before her appt at the end of the month, I have to talk to her about it too when she comes in town. I will let you know what her Doc says about this.
06-30-2011, 12:56 PM   #13
JJOM
 
Join Date: Jan 2011

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Quick Update: It has been 12 weeks.

I started LDN in April. I was at 3mg after the first week of April and this is where I consider that I was taking a therapeutic dose.

I have seen steady SLOW improvement, in my BM's. When I say SLOW I mean SLOW. I was having 7+ BM's per day when I started LDN and just this week I am now at 4 (some 5 days) BM per day. 4 to 5 is obviously better, but the 'quality' of the BM's has also improved. I like to say they are much 'cleaner' and more controllable. I have put on some weight (only about 1/3 of what I would want to see) and my anemia has improved slightly (yet still not nearly enough). I am still fatigued/weak, and this seems to be a potential side affect of LDN. I am not sure if the continued fatigue is a side affect of the LDN, or it is just me and my crohn's/colitis. Being that my anemia has improved from blood analysis, yet I don't really 'feel' like it has, I am believing that it is at least partially the LDN.

I have been very hesitant to update because the effect so far has proven to be such a slow process. I have always felt that one 'bad' day or two could easily wipe out these gains, and I would be right back where I started. Believe it or not, having such a slow response has proven to be very stressful in itself.

Another concern I am having is that the LDN, although helpful, will not get me to where I need to be. Essentially, I am afraid that I will be one of the people that LDN 'help's' but doesn't help enough.

Don't get me wrong, I am grateful that it seems to be helping at all, but If I can't get over what I am calling my 'hump'; I feel that I will be in no-man's-land.

Summary: If one looks at from the Crohn's Disease Activity Index (CDAI) the LDN seems to have improved my score. Less BM per day, slightly more weight, improved Anemia (note: I am getting Iron infusions and B injections), reduced occurrence of fevers, etc.. I AM happy that it seems to be helping some. Maybe it is selfish, but I really need more.

Fingers are crossed that this SLOW improvement can continue, and get me over my hump! It would be nice to get some type of life back (this flare is measured in years now).

Starting to wander if LDN should be a first line treatment for IBD? It is cheap (probably why it will never be mainstream, no one is getting rich off of it), low side effects, easy to comply with, etc. etc.

Note: I have stayed on my 6MP, and I did a month of the controversial MMS as a prep./cleanse.

I am not a doctor or health care professional (quite ignorant actually)
05-28-2012, 12:38 AM   #14
JJOM
 
Join Date: Jan 2011

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05/27/2012 UPDATE

I will soon write more detail about my experience with LDN. Ever since the one year mark I have wanted to report to you all here.

Summary: It is my opinion that LDN should be a first line drug. Period. I have pretty much done them all.

Needless to say EVERYTHING had failed me, and was either going to lose my colon (I was literally scheduling a pre-op procedure), or go for stem cell treatment.

I convinced my GI that we should try LDN (and we finally did about 13 months ago), and even though the studies were of a short duration; I was told by the 'other doctor' who lead me to it, that it could take a long time to work.

Well, I honestly can say I think it started to work quickly, BUT it was doing very little. In fact, I was always scared to talk about it, because I could not comprehend how slowly something could "work". Essentially, if one were 'measuring' my progress it would be difficult to show much of any change without covering weeks of data. Don't get me wrong, as slow as the improvement was, the improvement was apparent.

At the 7+ month point I knew that is was working well; it was at that point that I was pretty happy where I was, and hadn't really had any significant relapses for some time.

At 10 months I was doing even better. I am now wandering how to lose weight! (I was in the 140's when I started, I am now 180 lbs.)

I plan to do a more though review/report soon. It will take some time, because I want lay out the path I decided to take, with LDN (treatments, medicine I was on, supplements, etc.).

BTW, I stayed on my 6mp the whole year.


JJOM

Last edited by JJOM; 05-28-2012 at 12:45 PM.
06-06-2012, 09:34 AM   #15
JoyceF
 
Join Date: Jun 2012
Location: Chicago, Illinois

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I have been taking LDN for MS since 2002. I just wanted to mention that the only thing that you can't take with it is any narcotic. I'm not sure but I don't think that 6mp is a narcotic is it?
03-07-2013, 03:41 PM   #16
JJOM
 
Join Date: Jan 2011

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UPDATE: 03-07-2013

LDN, About 2 years later...

I just got back from my first colonoscopy since starting LDN (Started right before I was going to lose my colon, or do stem cell transplant). As reported here; I had very slow, but positive results from the LDN.

We waited an additional year to scope me because my disease is very sensitive to disturbances. Most scopes usually end up hurting my situation.

I woke-up to a smiling GI Doc, and he said, "other than the scaring (I have a lot of scaring), things look really good... remission!"

This is the same doc that was at first against it, we joke about it now, but I'd like to think there are others benefiting from LDN now that I pushed it (they are a large group, and I was the first).


Note: I recommend taking SAMe supplements with it. Any that come packaged in a blister pack will do, I take it twice a day (disclaimer: I am not a doctor).

Note 2: I have done it all. I THINK EVERYONE SHOULD TRY THIS! Remember, it may take time.

Edit: I am still on the 6mp

Last edited by JJOM; 03-07-2013 at 04:03 PM.
03-07-2013, 04:11 PM   #17
EthanClark
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Join Date: Oct 2012
Location: Provo, Utah

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JJOM-I am so happy to hear your success. I am on week 3 of LDN and hoping this does the trick for me. I will remember to be paitient
03-07-2013, 04:14 PM   #18
Jmrogers4
Moderator
 
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JJOM, That is fabulous news! Thank you for updating and letting us know how you are doing.
__________________
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
05-07-2013, 06:55 PM   #19
zab
 
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Join Date: Mar 2013
Location: columbia, Maryland

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Thanks so much for sharing your story JJOM.
I got a script tonight from our secondary alternative doctor, and am now looking around to make sure this is the right route to take. My son has inflammation from "top to bottom" including mouth ulcers. He had such a bad reaction to steroids that after I finally got him weaned off he is reluctant to try any other drugs. (as am I once I started hearing of other reactions) LDN is our next choice of action and then next week I have a meeting with a doctor who will do testing for LDA ( allergy therapy) I am feeling better about finding our next steps after hearing some stories here. My son has been really ill for a very long time. DX a year ago with crohns. It is really hard to know what the right aproach is. He is currently on Pentasa which I think does absolutely nothing for him except make him more tired and possibly give him headaches.
He has been on it for a year. He is so resigned to his low quality of life and he has a good outlook and gets by okay but it is so distressing to me and everyone else that he is missing out on so much and not feeling well. We get the LDN in the mail in a few days! I sure hope it helps him. WIshing I could take him off the pentasa when he starts but our doc says not right away. anyone have experience with this? will keep reading the rest of the site on this subject. thanks so much.
__________________
Liz,
GF Mom of 14year old:
Early stage Crohns" "Microscopic inflammation" from"top to bottom"
currently on 3.5mg LDN ( started June 2013)
doing LDA injections 9 week intervals ( june 2013)
4000 mg pentasa
VSL
diagnosed 2/12 still mostly bedridden as of 9/13 but has gained wieght and some muscle. :]
08-07-2013, 12:24 AM   #20
BoyMama2000
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Join Date: Sep 2011
Location: Denver-Boulder, Colorado
Zab - How is LDN working for your son?
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