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Crohn's Disease Forum » Treatment » Low Dose Naltrexone » LDN ? about starting the drug.....


04-09-2011, 04:51 AM   #1
crushingcrohns
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LDN ? about starting the drug.....

I read a post and someone mentioned that it probably isn't a good idea to start LDN while flared. Well, I've been starting to feel worse and experiencing more symptoms of recent. What do you guys think? I have the medicine, just not sure what dose to take startig out. Probably like 1mg or 2mg and gradually up the med to 4.5mg.

Any suggestions??

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04-10-2011, 02:13 AM   #2
Aussie Lea
 
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The reference material definitely suggests a gradual increase of the LDN. I think the problem with LDN and the severity, is that the other medication you take may counteract what the LDN is trying to do. I will find the resources I mentioned on another post and forward you.
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2013 Flare Up Treatment
Humira
Entocort
Prednisolone
Vitamin B12 Injections
Cymbalta
Acupuncture

Previous Treatment:
April 2009
40mg Prednisolone - tapered over 6 months to 5mg
50mg Imuran
Questran
Vitamin B12 injections
Remicade 8 weekly infusions for 12 months 2009-2010

2011:
Started LDN 18/11/10 gradual increase from 1.5 - 4mg
Questran
Prednisolone 5mg
Vitamin B12 injections
Vitamin D

Diagnosed Crohn's in 1985
04-10-2011, 02:16 AM   #3
Aussie Lea
 
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Have a read of this post by another member regarding dosages etc. http://www.crohnsforum.com/showpost....67&postcount=2
02-12-2012, 10:25 AM   #4
crushingcrohns
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How do you feel? Are you still on LDN and all the other meds?

Just checking in to see how you are




The reference material definitely suggests a gradual increase of the LDN. I think the problem with LDN and the severity, is that the other medication you take may counteract what the LDN is trying to do. I will find the resources I mentioned on another post and forward you.
02-12-2012, 12:09 PM   #5
Kev
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I started off at 4.5 mg in the midst of a major flare. It (LDN) worked, but it took a while (and waiting to see if it would/wouldn't work while I continued a downward spiral flaring wasn't a pleasant experience). I think that many doctors prefer the ramp up method as it is considered safer (whether for them or their patients is a debate I won't get into). If you can get your hands on the full transcript of the original trial by Dr Jill Smith, I'd look into what dosages she trialed her patients on. Back when I started (Nov 2007) I understood very little about how the drug worked (I was more interested in whether it would work). My understanding now (and this is all anecdotal) is that, taken in small doses, it acts like an immune suppressor. If that is actually the case, then it should be safe to combine it with other immune suppressors. I don't know if it is possible, but you might try contacting Dr Smith. Or check the lowdosenaltrexone.org website for answers.
Thing of it is.. since the dose is low to begin with, and the dosage mentioned in the parts of the original study I looked at talked about 4.5mg, I went with 4.5mg and that worked for me. I'd suggest starting at that dose, and if it doesn't harm you in any way, stick with it. If it does, then cut back to 3mg, try again... and then to 1.5mg if 3 gives you grief. Hey, when I started, I got way worse on LDN (due to flare), but then it kicked in and it just kept getting better N better. I wish that my original diary of those first weeks were still on this site. I think you'd find your situation mirrors my own early days. I only hope that 4 years from now you will be the one on here bragging about your success.
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Dx'd July, 2006
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Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
02-12-2012, 01:09 PM   #6
crushingcrohns
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I started off at 4.5 mg in the midst of a major flare. It (LDN) worked, but it took a while (and waiting to see if it would/wouldn't work while I continued a downward spiral flaring wasn't a pleasant experience). I think that many doctors prefer the ramp up method as it is considered safer (whether for them or their patients is a debate I won't get into). If you can get your hands on the full transcript of the original trial by Dr Jill Smith, I'd look into what dosages she trialed her patients on. Back when I started (Nov 2007) I understood very little about how the drug worked (I was more interested in whether it would work). My understanding now (and this is all anecdotal) is that, taken in small doses, it acts like an immune suppressor. If that is actually the case, then it should be safe to combine it with other immune suppressors. I don't know if it is possible, but you might try contacting Dr Smith. Or check the lowdosenaltrexone.org website for answers.
Thing of it is.. since the dose is low to begin with, and the dosage mentioned in the parts of the original study I looked at talked about 4.5mg, I went with 4.5mg and that worked for me. I'd suggest starting at that dose, and if it doesn't harm you in any way, stick with it. If it does, then cut back to 3mg, try again... and then to 1.5mg if 3 gives you grief. Hey, when I started, I got way worse on LDN (due to flare), but then it kicked in and it just kept getting better N better. I wish that my original diary of those first weeks were still on this site. I think you'd find your situation mirrors my own early days. I only hope that 4 years from now you will be the one on here bragging about your success.
Well, I started low because when I didn't have a dr and was ordering the naltrexone from out of the country I went to the pharmacy to inform them that I was adding the drug and had them check in the computer for possible interactions. Well the computer lied because I was on lomotil which has some kind of opiate makeup I ended up in the hospital. So the retry after I was able to find a nearby Dr was a 1mg dose. I went up to 2mg because I was starting to get sick.
The LDN was actually making me sick due to the filler they were using. LACTOSE! Who uses lactose as a filler. So many people are allergic. Now I'm on 3mg and getting better. I almost stopped bleeding and was feeling normal, but I'm not discouraged. I know it will make me better like it did a few months ago.
FYI: LDN BOOSTS the immune system. Such a wonderful drug.
02-13-2012, 07:32 AM   #7
SnowDay
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Hey, when I started, I got way worse on LDN (due to flare), but then it kicked in and it just kept getting better N better.
How long, roughly, did it take, Kev?
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02-13-2012, 06:55 PM   #8
Kev
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Well, it would be soooo nice if my original daily diary of starting LDN hadn't vanished. But, I think (its been over 4 years, my memory is pretty faulty) that it took 6 - 7 weeks before I started to improve. I was sweating it at the time, because I didn't know IF it would work, let alone when. But, it did, and has literally given me back a life that I can live and enjoy.
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