Share Facebook
Crohn's Disease Forum » Treatment » Low Dose Naltrexone » Does your GI know you take LDN?


04-08-2013, 01:46 PM   #1
akduck
Senior Member
 
Join Date: May 2012
Location: Alaska
Does your GI know you take LDN?

My GI has turned me down for LDN, and I am going to pursue getting it through another Dr. If your GI said no, and you got LDN some where else, did you tell your GI? If so, what was the GI's reaction?
04-08-2013, 01:53 PM   #2
nogutsnoglory
Moderator
 
nogutsnoglory's Avatar
 
Join Date: Sep 2009
Location: New York

My Support Groups:
I switched to a GI that was open to it. I never took it even though he gave me the prescription. I am uncomfortable with all the compounding pharmacy scares in the news lately.
04-08-2013, 02:55 PM   #3
alex_chris
Senior Member
 
alex_chris's Avatar
 
Join Date: Apr 2013
Location: Frankfurt, Germany
Well, I got a regular control appointment (half year) coming up in 2 weeks. I will ask my doc then about LDN (just ask). If he says he won't prescribe it, I will do a bit more research on the subject and might just ask a few other ones.

If I would get a prescription from another GI, I would switch to that GI. Except if there are certain other circumstances that do not make such a switch viable.
__________________
-----
Crohn's diagnosed in 1999
On Aza from 2003 to 2008 and from 2010 again until Today
60cm of smaller intestine removed in 2003
Vitamin therapy with D3, B6, B12, magnesium, zinc, folic acid for years
Iron therapy with Tardyferron 80mgx2 and Loesferron 80mg for years
Yoga, running, freeletics on the sport side!
04-08-2013, 03:21 PM   #4
Jmrogers4
Moderator
 
Jmrogers4's Avatar
I think there have been a few people who have gotten it through another doc, usually there GP. I think most have informed their GI that they were taking it, whether it was after they started or before I'm not sure. JDTM? Ctrl Z?'
My son's GI was the one that suggested trying it but I believe we are a rare case of that happening.
__________________
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
04-08-2013, 04:32 PM   #5
bobisacrohny
 
Join Date: Oct 2012
Location: st. louis, Missouri

My Support Groups:
I really hope these doc's aren't trying it because of profits! I haven't seen anything where it can cause damage to the body other than it has an effect on pain medications within a few days after the last dose while it is still in your system. That is why they use it for addiction treatment. The FDA approved it for that reason and they do not seem to think it is bad. This drug needs further studies for Crohn's use as I have heard too many good things about it but I haven't taken it because my doctor said not!!!
04-08-2013, 04:42 PM   #6
alex_chris
Senior Member
 
alex_chris's Avatar
 
Join Date: Apr 2013
Location: Frankfurt, Germany
Naltrexone is an old drug and if used in low dosage mode its use is pretty cheap. Not sure how docs would profit from handing out a precription.

Your doc said not to take it because there is no conclusive evidence that it works, not because of any substantive reason.
04-08-2013, 05:12 PM   #7
ctrl z
Forum Monitor
 
ctrl z's Avatar
 
Join Date: Nov 2011
Location: Pennsylvania

My Support Groups:
I switched to a GI that was open to it. I never took it even though he gave me the prescription. I am uncomfortable with all the compounding pharmacy scares in the news lately.
Can you share some of these news stories with us?

I read the news and I like to think that I'm pretty up to date on what's going on in the world these days but I haven't come across any about compounding pharmacies.
04-08-2013, 05:19 PM   #8
ctrl z
Forum Monitor
 
ctrl z's Avatar
 
Join Date: Nov 2011
Location: Pennsylvania

My Support Groups:
My GI has turned me down for LDN, and I am going to pursue getting it through another Dr. If your GI said no, and you got LDN some where else, did you tell your GI? If so, what was the GI's reaction?
I got my LDN Rx from from a DO because my GI doctor lied about it being illegal to Rx it. Basically, she was just deflecting because she had no interest in deviating from the "standard of care".

I ended up telling her that I got it from somewhere else. She was snooty about it but I've pretty much fired her and moved on.

I don't know if my new GI is open to it, but they know I'm using it. Would they refill my Rx? I don't know. But they seem more honest and treat me and my decisions with respect.

Last edited by ctrl z; 04-11-2013 at 01:31 PM.
04-08-2013, 06:39 PM   #9
bobisacrohny
 
Join Date: Oct 2012
Location: st. louis, Missouri

My Support Groups:
The alternative LDN drugs (if works), Remicade and Humira, and surgery are very, very expensive which can also be adverse! Biologics and surgery is a frequent medical path of a Crohn's patient because the disease has no known medical cure... LDN from what I have read is a drug that can't be patented by any drug manufacturer and is low cost unlike Remicade and Humira where companies are willing to invest in R&D because the money is there which could be blocking LDN if it is a credible drug. We need real facts for or against LDN because biologics and surgery(s) are serious treatments and should be treated as a last resort because of the major patient counter effects! I am not seeing the facts! This is where the good moral and ethics in people needs to shine...

http://www.ncbi.nlm.nih.gov/pubmed?o...se+Naltrexone+

http://www.sciencedaily.com/releases...0902133047.htm

https://en.wikipedia.org/wiki/Low-dose_naltrexone
04-08-2013, 10:26 PM   #10
akduck
Senior Member
 
Join Date: May 2012
Location: Alaska
thanks everyone! I have asked my GI and he said no, listed several reasons. I have had a resection and abccess caused by a blockage / perforation removed. Haven't ever been on any meds, and I want to try LDN before biologics! I am going to ask my primary doc, and will continue till I find a doc who will prescribe it! I hope it works for me. If not, then I will be more open to other drugs.
I found this article today, and it looks very hopeful! About half way down the page they say they are going to test on LDN for Crohn's.

http://www.marketwatch.com/story/tni...ion-2013-02-01

I am all for trying something that has been around so long with not many side effects, and is low cost.
04-09-2013, 09:52 AM   #11
JDTM
OMG LDN BBQ
 
JDTM's Avatar
 
Join Date: Feb 2012
Location: Providence, Rhode Island

My Support Groups:
In my case, it was actually my GI who prescribed my LDN, but I was doing pretty well at the time and my case is considered mild, so she was open to taking a chance with me. The fact that I didn't stop taking my other "maintenance" medication (Pentasa) probably helped a bit too; she might have been singing a different tune if I was adamant about getting off of all the other pills.
__________________
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
04-09-2013, 09:59 AM   #12
bobisacrohny
 
Join Date: Oct 2012
Location: st. louis, Missouri

My Support Groups:
Please share if it works with you or not! Yes, from a patient perspective LDN sounds good if it works. After reading the Marketwatch article I am guessing maybe the biotech company in that article has found a way to patent a form of LDN to where it is profitable but don't know, but sounds like it could be progress. IBD superhero where are you? Let's keep our fingers crossed. There is enough snake oil out there already. There are a lot of different scenarios with IBD but there should be common characteristics of the drug of what it does, good and/or bad, I would think. We need facts and considering all the suffering IBD causes and side effects of treatments it is justifiable!

http://www.ncbi.nlm.nih.gov/pubmed?o...se+Naltrexone+

http://www.sciencedaily.com/releases...0902133047.htm

https://en.wikipedia.org/wiki/Low-dose_naltrexone
04-09-2013, 10:03 AM   #13
JDTM
OMG LDN BBQ
 
JDTM's Avatar
 
Join Date: Feb 2012
Location: Providence, Rhode Island

My Support Groups:
Hey Bob -- the patents for LDN have been acquired by TNI Biotech, and phase III clinical trials may be on the horizon in the near future (I hope), so things may be looking up as far as legitimizing the use of LDN to treat IBD. The phase I and phase II trials looked promising, so there's hope!
04-09-2013, 01:27 PM   #14
bobisacrohny
 
Join Date: Oct 2012
Location: st. louis, Missouri

My Support Groups:
04-09-2013, 01:38 PM   #15
bobisacrohny
 
Join Date: Oct 2012
Location: st. louis, Missouri

My Support Groups:
I would think this means getting it at a regular pharmacy and being covered by insurance. Happy, happy, joy, joy!!!
04-09-2013, 01:40 PM   #16
JDTM
OMG LDN BBQ
 
JDTM's Avatar
 
Join Date: Feb 2012
Location: Providence, Rhode Island

My Support Groups:
True, but as it is, LDN is pretty damn inexpensive. It's actually cheaper for me than my Pentasa co-pay under my insurance! Kind of crazy, but it's nice to know that there may be an effective, inexpensive treatment out there, especially for those with little or no health insurance coverage. I'm more interested in the studies because if it's proven, it could be more widely used and prescribed by the medical community at large.
04-09-2013, 02:16 PM   #17
alex_chris
Senior Member
 
alex_chris's Avatar
 
Join Date: Apr 2013
Location: Frankfurt, Germany
Haven't ever been on any meds, and I want to try LDN before biologics! .
Off topic, but what would be our rational from jumping from no meds at all to biologics? The usual route has always been to try immunosuppressives first except if you know you cannot take them or you are a very severe case.
04-09-2013, 06:21 PM   #18
akduck
Senior Member
 
Join Date: May 2012
Location: Alaska
alex - My GI wants me to start Cimzia. He says that because I have had an obstruction that perforated and abccessed and required surgery my Crohn's is considered severe. I did take prednisone when I had the obstruction, in April, but was off of it by the end of June, and had surgery the 5th of July, all last year. I guess I could count the pred, but it was short term and specific to the obstruction. I was not diagnosed until they were able to do a scope in late May last year, although a CT scan in February when I had diverticulitis did indicate that I also had Crohn's. I haven't had any problems since the surgery, so have not started any treatment.
04-10-2013, 09:05 AM   #19
alex_chris
Senior Member
 
alex_chris's Avatar
 
Join Date: Apr 2013
Location: Frankfurt, Germany
alex - My GI wants me to start Cimzia. He says that because I have had an obstruction that perforated and abccessed and required surgery my Crohn's is considered severe. I did take prednisone when I had the obstruction, in April, but was off of it by the end of June, and had surgery the 5th of July, all last year. I guess I could count the pred, but it was short term and specific to the obstruction. I was not diagnosed until they were able to do a scope in late May last year, although a CT scan in February when I had diverticulitis did indicate that I also had Crohn's. I haven't had any problems since the surgery, so have not started any treatment.
Hmmm, I had one surgery (2 feet of smaller intestine removed in 2003) and the first thing my GI did (we discussed that before) after the surgery is start me on aza. For a good reason, surgery is no long term management of Crohn, it's a short term fix.

As to Cimzia, I would start with it and not go for LDN at the moment (and definitely if you were to decide on LDN, tell your GI). Your history is not that of a light case, so you need to try to get things under control long term. I know people on here have had great experiences with LDN, but there is a reason why the FDA and the EMEA require trials to test the effectiveness of drugs for a particular condition. If biologics work for you and LDN gets approved and works (with fewer potential side effects) eventually, there is no reason why you shouldn't switch then. That's how I will be handling LDN - I'll ask my GI about LDN (haven't yet), but if he says no, I will continue with Aza and only consider LDN (or biologics) as an alternative if I get into trouble or am falling our of remission again.
04-10-2013, 10:02 PM   #20
leahsmom
 
Join Date: Jun 2012
Location: St Louis, Missouri

My Support Groups:
My 15 yr old takes Ldn for crohns along with apriso and other supplements. We have seen a huge diff since starting Ldn almost a year ago now. Her GI would not prescribe it but I found a GP that did. Her GI didnt like it but he stills treats her (I think because I left her on apriso also). Her blood work is finally normal with an exception of anemic. This has not been a cure by no means, she still has mini flares but nothing like prior to Ldn. I pray the trials go well and everyone will have a chance at Ldn before trying all the biologics! Good luck and keep us posted
04-10-2013, 11:43 PM   #21
akduck
Senior Member
 
Join Date: May 2012
Location: Alaska
alex - I would just rather try the LDN first, for so many reasons. LDN has been around for 20 -30 years, and used at much higher doses for it's original reason, and virtually NO side effects. I think with the % of symptom improvement and remission in the trials so far, it is worth it over the cost, side effects and fact that it is an injection ( needles and me is a nightmare). I also have some history with family and friends who have been treated with drugs that have bad side effects, and had bad side effects - one of them died. So I am not inclined to jump on the bandwagon of relatively new drugs, with known adverse side effects and the long term use / effects are still to come! It's just a personal choice.

leahsmom - I am glad to hear the LDN is working pretty well, and glad that your GI didn't drop you! I guess that is a possibility.
I am hoping for the trials to go forward, with good results, too. I hope the biotech company that bought the patents to Jill Smith's trials at Penn state really is serious about LDN!
04-21-2013, 07:57 PM   #22
crampygut
Senior Member
 
crampygut's Avatar
 
Join Date: Nov 2006
Location: Melbourne, Australia
I haven't told my GI I'm starting LDN, he simply doesn't condone any treatment unless the treatment is being used universally by all GI's. once I asked him about worm therapy and Anti-MAP therapy he looked at me like I was nutts. So since then I never tell him when I use supplements or meds that aren't prescribed by general GI's.
__________________
Bowel resection 2005 & 2012

Currently on: Vedolizumab, Entocort, methotrexate


Supplements: multi V, probiotics, vit D.
Diet: gluten free, low sugar and Low Fodmap diet.

Last edited by crampygut; 04-21-2013 at 07:58 PM. Reason: Spelling mistake
04-22-2013, 12:06 AM   #23
akduck
Senior Member
 
Join Date: May 2012
Location: Alaska
crampygut, my GI is like that too! I told him that he should come in this forum and see things from the perspective of people who HAVE this disease. He said you can't trust what you read on the internet! OMG! He is aware of LDN, but won't prescribe it because it's off label, but now he knows that I want to take it. I hope I can get it from my primary care dr - she is more inclined to at least consider off label! I know I won't tell my GI before my next scope, if I get it before that! I want to have an unbiased scope
Good luck with the LDN!
04-22-2013, 08:51 PM   #24
bobisacrohny
 
Join Date: Oct 2012
Location: st. louis, Missouri

My Support Groups:
I like treatments that bring the body up to fight it from being down and not bringing the body down in hopes it will come up. Am I crazy???
04-23-2013, 12:22 AM   #25
akduck
Senior Member
 
Join Date: May 2012
Location: Alaska
I don't think you're crazy! I think that is a grey way to look at things.
Reply

Crohn's Disease Forum » Treatment » Low Dose Naltrexone » Does your GI know you take LDN?
Thread Tools


All times are GMT -5. The time now is 05:57 AM.
Copyright 2006-2017 Crohnsforum.com