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Crohn's Disease Forum » Treatment » Low Dose Naltrexone » Just got my script filled


11-22-2013, 09:14 PM   #1
superzeeman
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Just got my script filled

I live in a small town and was actually able to fine a doctor to prescribe and a compounding pharmacist. I was shocked! Any way, I am about to start taking it. The pharmacist says it can cause "weight changes" does that mean heavier or lighter? I sure the heck do not need heavier. Also mentioned taking it between 11pm and 1am. I am never up past 9pm. Is that ok to take it at 9 or so? I am excited to be off methotrexate and start this drug
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11-23-2013, 12:24 AM   #2
nogutsnoglory
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It's critical to take it in the timeframe of pre-dawn from what I understand.

"take LDN as recommended above; i.e., between 9pm and 3am. This relates to the fact that the endorphins for each day are always produced in the pre-dawn hours, regardless of the hours when one is awake or sleeping."

http://www.lowdosenaltrexone.org/further_q_and_a.htm

Good luck and keep us posted of your progress. I think you need to avoid Imodium and pain killers if you happen to use them.
11-23-2013, 10:26 AM   #3
superzeeman
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One thing I did think was that the cost was pretty high. I had to pay $100 for 90 day supply. I assumed since this was a generic drug it would be fairly cheap. Is this in line with Skips and other compounding pharmacies?
11-23-2013, 02:56 PM   #4
superzeeman
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Ok, day one was last night. Today, not sure if it is connected but I cant seem to get enough water and I feel fatigued more than normal. I slept fine with lots of dreams but nothing out of the ordinary I feel. The pharmacist did say that I should drink lots of water with LDN and that It may have a cleansing effect like a detox? He also suggested taking Alpha Lipoic Acid whatever that is. So did anyone feel kind of blah the next day?
11-23-2013, 03:12 PM   #5
nogutsnoglory
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Ill tag Kev as he has been for years and is the CF LDN expert in my opinion.
11-23-2013, 09:40 PM   #6
Kev
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Sorry for taking so long to notice I was tagged. Thank God I'm not Superman, or Batman, right? Just been dealing with a personal crisis (not health related for a change).

Couple of things... I'm up M - F at 5 AM (ain't life grand). But, that means I'm in bed by 9:30 - 10 PM at the latest (although I try to stay up a little later on weekend, just like a big boy)... My point is.. usually I've taken my pill by 9:30, 10... then I'm off to la la land.

I currently pay 75 cents CDN per pill. I WAS paying about $1 a pill at my prior pharmacy.
There was one pharmacy that wanted over $2.50 a pill (and they swore they weren't just money grubbing bloodsuckers trying to profit from my disease, but I didn't really believe it)..

And, although I just adore praise.... (you're making me blush)... OK, seriously, I'm not an expert. What I am is a person who saw an opportunity early on to avoid some of the scary drugs out there, was lucky that my doc agreed to give it a try, was foolish enough to try it, was doubly lucky that it was legit AND worked on me. That is more or less what I've done. No medical training, no qualifications, just one extremely lucky son of a ..gun.
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11-23-2013, 09:46 PM   #7
nogutsnoglory
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Don't be bashful. You know your stuff when it comes to LDN and have had a good response.
11-23-2013, 09:57 PM   #8
superzeeman
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Thanks for the info Kev! BTW, the pharmacist said that weight changes could happen. Is this common. I really don't need to get fatter. AS for bedtime, I live in a small town without much stimulation and I am in bed by nine each night or before. So I will have to take it at 8:30 each night to be safe.
11-24-2013, 08:28 AM   #9
Kev
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I never heard of anyone gaining weight from the drug directly. Not saying it can't happen. If I were to take a wild assed guess, it would make perfect sense this occurring.

LDN does it's thing... (that can take a while, and it can be rough in the early stages).. then your GI tract begins to recover. Permanent scar tissue is permanent, it isn't going away... but all of the inflamed areas, that heals. Mucosal healing. Healthy, pink, doing what it is supposed to be doing. Processing food, absorbing nutrients. See the issue?

You feel better... you can eat 'normally'... all the things you couldn't eat when you were sick. Perfect recipe for gaining weight.
11-24-2013, 12:29 PM   #10
Jmrogers4
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Naltrexone lists as one of its side effects - lack of appetite. I know my son does not have an appetite at all and as he is underweight it is something we have to watch. He just doesn't feel hungry. I believe Sally Jane just started LDN and is feeling the same lack of appetite.
We pay $15 for a 30 day supply but insurance for whatever reason (I'm not complaining and didn't ask) started covering it before that we were paying $43 for 30 day supply.
Jack takes his at 9pm every night which is bedtime during the week as he has to be up by 6 for school however on the weekend being a teenage boy bedtime is more like 2-3am or later
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11-24-2013, 12:47 PM   #11
superzeeman
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OOOh, I will hope for no appetite then. Lol, sorry for those that need to gain. That sucks. Im fat though and need to drop some weight.
11-24-2013, 12:54 PM   #12
Jmrogers4
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Yeah, I wish I had the no appetite
11-25-2013, 08:07 AM   #13
superzeeman
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Day three- Expelled lots of mucus. I don't think I have had that in 2 years. results of the LDN? Unclear.
11-26-2013, 07:45 AM   #14
superzeeman
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For the first time in years I didn't have so much fatigue that I had to fall asleep at 8:30 last night. I stayed up until 10pm! I am feeling so much better. This is in spite of my cat scan showing no active disease at the moment. I always feel like I have active disease. So far so good with LDN
12-03-2013, 04:35 PM   #15
JDTM
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Hang in there bud -- you'll be staying up until 11:00PM in no time.

But seriously, superzeeman... how's it going?
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Current meds:
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Previous meds:
Dexilant (too pricey!), Xifaxan (short course), budesonide (tapered off), Pentasa (had to switch in January 2016), omeprazole

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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
12-03-2013, 07:51 PM   #16
superzeeman
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Im doing good. I just started a cleanse. The doctor that put me on LDN is a bit of a naturalist and asked me to clean out my toxins by doing this cleanse. Anyway, it sure does work. So, back to LDN. I just started the 4.5mg dosage up from the lower dose that he started me on. I am taking a risk with LDN. I have fistulating crohns and it was all removed surgically less than 2 years ago. So, I technically do not have active disease. My new doctor says that LDN will help keep the fistulas from growing back. So, I have a bit of a different situation than others so I will have a longer wait to see if it works.
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