Share Facebook
Crohn's Disease Forum » Treatment » Low Dose Naltrexone » LDN making IBD worse


12-07-2014, 08:55 PM   #1
nogutsnoglory
Moderator
 
nogutsnoglory's Avatar
 
Join Date: Sep 2009
Location: New York

My Support Groups:
LDN making IBD worse

I have my LDN sitting here and I'm afraid to take it. What if I get worse? What if it negates remicade or makes me flare? I want to use it for my fibro mainly and as an augment for crohns but I'm petrified to make my crohns worse since I'm in better shape now.
12-08-2014, 08:24 AM   #2
Kev
Senior Member
 
Join Date: Jun 2006
Location: Halifax, NS, Canada

My Support Groups:
The best advice I can offer is... if what you are doing now is working, don't rock the boat.

My understanding of LDN and fibro is... that doctors who prescribe it call it their 50/50 drug. Half the people who take it will have their pain reduce by half. Best case scenario.

I personally don't think it would interfere with Remicade, but what do I know? I have zero training/expertise in this area. Now, if you did take it, and found there were no negative effects.... then you may have laid the foundation for a replacement drug if Remicade ever stopped being an option for you. A chemical 'two birds with one drug' sort of situation. It is your call. I recall all too well the fear I felt when I tried it. And it takes so damn long to show whether it's working or not. But, they say it is safer than taking an aspirin a day.
__________________
KEV

Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
12-08-2014, 10:33 AM   #3
nogutsnoglory
Moderator
 
nogutsnoglory's Avatar
 
Join Date: Sep 2009
Location: New York

My Support Groups:
I definitely hear you Kev. It's been something I feel like I have given thought to for years now but finally took the plunge and got it.

Remicade has been amazing for me, yes crohns is still controlling my life but it's in a much better place.

I don't want to rock the boat but my fatigue is still very difficult. I am a little better from some major vitamin supplementation but I really am hopeful LDN could be a game changer.

I just don't want to aggravate the crohns or mess with the remicade.

I know you flared very badly recently and stopped ldn and went on remicade. Is there any reason you chose not to do both?
12-08-2014, 11:34 AM   #4
Jmrogers4
Moderator
 
Jmrogers4's Avatar
We went back and forth as to whether or not to continue the LDN while on remicade since it had worked for us in the end we did not because it was just one more medicine that he would have to remember to take and being a teenager and all Jack's thought was if one medicine was working why do I need to take more. I didn't push and luckily the remicade alone has been enough to keep him in remission but I think if we need to add another medicine to the remicade since methotrexate is out for us LDN is an option.
I personally don't think it would aggravate the Crohn's, Jack was supposed to stay on Imuran for 3 months while starting the LDN to give it time to work and keep the Crohn's under control but a miscommunication with GI office we stopped the Imuran when we started LDN and didn't realize we were supposed to continue on Imuran until the 3 months had already passed
__________________
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
12-08-2014, 11:41 AM   #5
nogutsnoglory
Moderator
 
nogutsnoglory's Avatar
 
Join Date: Sep 2009
Location: New York

My Support Groups:
Well they say that sometimes people get worse before getting better because unlike the immune suppressants this is an immune regulator/booster in a way and it could make the autoimmune disease worse.
12-08-2014, 11:55 AM   #6
Jmrogers4
Moderator
 
Jmrogers4's Avatar
For us I think the worse before getting better was because LDN hadn't really kicked in and he was on no other medication. I think the body just takes time to heal itself with LDN and it's a slow process.
But I can totally understand if you are in a good place not wanting to rock the boat and take a chance of anything changing
12-08-2014, 02:22 PM   #7
Kev
Senior Member
 
Join Date: Jun 2006
Location: Halifax, NS, Canada

My Support Groups:
The reason that LDN was stopped was because I flared rapidly, extreme deterioration in a short period of time. With the change over to Remicade... which wasn't successful for me immediately, I developed sleeping issues. Insomnia. Since LDN would take too long to do me any good... and.. because it might contribute to my sleep issues, it was taken away. A lot of that was because, while in hospital, it wasn't seen as standard best practices.
12-10-2014, 05:25 PM   #8
VeganOstomy
Senior Member
 
VeganOstomy's Avatar
 
Join Date: Oct 2013
Location: Oshawa, Ontario

My Support Groups:
I have my LDN sitting here and I'm afraid to take it. What if I get worse? What if it negates remicade or makes me flare? I want to use it for my fibro mainly and as an augment for crohns but I'm petrified to make my crohns worse since I'm in better shape now.
What does your doctor think? They may be completely supportive of the idea to use ldn as an adjunct. Or, they might explain why it might be problematic.
__________________
Visit my blog to find out how I live with an ostomy while maintaining a vegan lifestyle. Tips, reviews and food

https://www.veganostomy.ca
https://www.youtube.com/user/Veganostomy/
https://www.facebook.com/Veganostomy
https://www.twitter.com/VeganOstomy

12-10-2014, 06:44 PM   #9
nogutsnoglory
Moderator
 
nogutsnoglory's Avatar
 
Join Date: Sep 2009
Location: New York

My Support Groups:
GI thinks LDN won't help or hurt.
12-10-2014, 07:10 PM   #10
VeganOstomy
Senior Member
 
VeganOstomy's Avatar
 
Join Date: Oct 2013
Location: Oshawa, Ontario

My Support Groups:
GI thinks LDN won't help or hurt.
If it won't hurt, what's holding you back? Seems like you either gain something or nothing happens.

I took ldn, but it didn't work for me. Like any other drug, it might work for some, but not others.
12-10-2014, 07:48 PM   #11
xmdmom
Senior Member
 
Join Date: Jun 2012
Location: New York

My Support Groups:
Want to add my son's experience. He was on LDN and budesonide and recently started remicade. He has weaned off budesonide and he stopped LDN but then felt worse so he restarted it and is on LDN and Remicade now. So far, he has seen no negative interaction evident between LDN and Remicade.
12-10-2014, 07:49 PM   #12
Kev
Senior Member
 
Join Date: Jun 2006
Location: Halifax, NS, Canada

My Support Groups:
OK, I can understand why your GI thinks it won't hurt. It is considered safer than taking an aspirin. My own GI gave it to me... confidentially.. back in 2006 because she was sure it wouldn't hurt. And there was a chance... based on only one study back then, it might help. And help it did... for 6 1/2 years... at virtually no risk to me. As to why a doctor, a GI, might say he/she didn't think it would help, multiple studies show it should help 3/4+ on average of the people who take it as prescribed. Highest/most optimistic.. is near 90%

Now, perhaps your GI has info that tells him/her that, in conjunction with Remicade, LDN does not have an immune system capable of fighting off any disease. However, others on here say that LDN doesn't use the immune system to work. I'm not sure which is the case. I guess, if it can do no harm... then the question is... will it do any good. Only way to find out is to try it... while the LDN is fresh. Once it goes stale, it can't be relied on, OK
Reply

Crohn's Disease Forum » Treatment » Low Dose Naltrexone » LDN making IBD worse
Thread Tools


All times are GMT -5. The time now is 01:24 AM.
Copyright 2006-2017 Crohnsforum.com