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Crohn's Disease Forum » Treatment » Low Dose Naltrexone » Why I never filled my script


04-27-2013, 07:14 AM   #1
nogutsnoglory
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Why I never filled my script

I have been interested in LDN for several months now and even convinced my doctor to write me a prescription. My only hesitation is that I do not feel comfortable using a compounding pharmacy. These pharmacies are not FDA regulated and I don't like the idea of someone toying with my medication. Ill always worry if they gave me the wrong thing or it isn't fresh and potent. There have been a number of scares from compounding pharmacies lately in the news as well.

I have read about ways to take full dose LDN and make a low dose version but I'm not sure how effective it is and it seems complicated. I don't even know if my doctor would be willing to write a script for the full strength.
04-27-2013, 08:35 AM   #2
JoyceF
 
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Hi there Noguts.....I can say that there are many really good compounding pharmacies out there. I personally have used Skip's in Florida and just have it shipped right to my mailbox. I like Skip for the LDN because he is right in there fighting the good fight for all of us to have the LDN. He will be at the upcoming LDN conference in October as he always attends them. He is that pro LDN. He also fills so many of the prescriptions for it that he buys the Naltrexone in bulk which saves on cost that he then passes the savings on to us which I love and admire about him. Anyway, the benefits of this great LDN find for you will far outweigh your trepidation about using a good trusted compounder. Just do your research and find one that many are using and are recommending. Don't deny yourself this wonderful solution for your Crohn's is all I can say.
Oh and many are doing the homemade route and perfectly happy with it. Just get the proper instructions for it and you are good to go. I was not comfortable going that way personally because I have always been able to get a prescription and have it done up for me in the capsules. To each his own but I just wanted to let you know I've been taking it for oh about 11 years now for MS. Hope this helps you decide and good luck to you.
04-27-2013, 09:14 AM   #3
nogutsnoglory
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I know most of the time it's probably fine especially if using a reputable LDN speciality compounding pharmacy. I just don't like that its not supervised and who knows what you are getting.

How do you get good instructions for homemade LDN?

The other thing is from most accounts it seems LDN is good for mild to moderate Crohn's. I have severe Crohn's so I'm not sure how much it can help.
04-27-2013, 09:41 AM   #4
Jmrogers4
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I believe Kev's crohn's was pretty severe when he started and my son's was classified as severe going from doudenum to anus and he is doing incredible after 10 months on LDN.
I just switched his Rx to Skips from a local compounding pharmacy because of all the recent things about compounding pharmacy. Also because they ship it and I got tired of driving across town to pick up his meds.
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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
04-27-2013, 05:54 PM   #5
JoyceF
 
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Hi Noguts...not quite sure I understand what you mean about not being supervised. Do you mean being on the LDN or the compounder. I do believe that compounding pharmacies must follow the same rules that any pharmacy must. But as I said do a little research and find one that many are using and swear by. Skip has been compounding LDN with great success for many years and I'm sure there are others out there with many years of experience as well. As far as good instructions with mixing it up yourself with the 50mg tabs, there are some really good instructions at goodshape.net site. He is a remarkable man that has helped many people with alternative means of helping with MS. If you go to his site you will find places to click on with info on mixing it up yourself. Many people years ago were not able to convince their doctors to prescribe that and when it comes to MS, we just don't have the time to sit around waiting for things to be recognized. That is how many of these things were formulated. Anyway, you are lucky, you have a skript in hand and would not have to mix it up yourself.
Like JmRogers...I love just calling in for my refills and having them ship it right to my mailbox. Couldn't be any simpler.
The way I see it Noguts....what do you have to lose to try it for a few months and see if it doesn't help you? Personally, I'd be more worried about all these crazy drugs that are being marketed and prescribed. Did you know that low dose naltrexone was first created to help ward off cancer? What I have always thought is wow....what better drug to have to take if one has to take one huh? Well that's just me...anyway, I know your fear but all things considered you should look at all the sides to this issue.
04-27-2013, 06:10 PM   #6
Kev
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Hi. My disease ... well, as for severity, I posted some internal photos.. very graphic, but it gives a much better indication of how bad I was.. at my worst, than I ever could via written word. You know what they say about a picture being worth.

My disease.. for whatever reason... spread like wildfire.. confounding the best GI in the area. He'd literally didn't think it was possible to spread that fast.. didn't believe me.. so I took photos of the blood, and clots.. I was losing. That got them to take a 2nd look.. and that lead to urgent operation.. and for my surgeon.. the fellow in charge of teaching GI's at the university.. to apologize. He said he'd never seen the like in over 30 years.

Now, in the initial study.. they restricted it to mild/moderate cases for patients who took a chance on this 'trial' treatment. I 'believe' that was simply because no one knew whether it would work or not.. and mild/moderate cases would respond to alternate therapy if the LDN didn't work. Just my guess.

As for compounding pharmacies... I've had it compounded by 2 different places here, and never had a problem.. aside from the 'age' of the compound. There is a way to make your own.. using 50mg pills and distilled water... but I 'believe' the shelf life on that is only 30 days. For those who can't get it any other way, it is a viable option. But, personally, I've taken close to 2000 compounded pills without a single issue ever.

Hope that helps
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KEV

Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
04-27-2013, 06:21 PM   #7
nogutsnoglory
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I know regular medication & pharmacies in the U.S. fall under FDA regulation. What that entails I'm not sure. I know the senate is considering a bill to regulate giant compounding pharmacies after several died of meningitis. The bill as it stands would only put FDA regulation over those who prepare injectables. It wouldn't apply to the small pharmacies compounding LDN. I think 90% of the time everything is fine. I'm just scared what if they put the wrong ingredient or another filler.
04-28-2013, 10:58 AM   #8
Kev
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Well, unfortunately, there are risks associated with practically... skip the practically.. everything we do. As for processing... whether it be drugs, foodstuffs, whatever.. things can AND do go wrong. I recall a major company that made/sold beauty products. Very well known name, very expensive brand of cosmetics. They either switched who supplied them their bottles of eye makeup.. or they used new equipment, something along those lines. Well, the probem was that these 'new' bottles had miniature shards of glass sticking up dead center at the bottom of the bottles.. nearly invisible to detect, and that batches of these were filled, and shipped out. I don't recall whether it was eye liner, mascara.. but something of that nature. Imagine.. stick the applicator/brush into the bottle.. break off a shard.. and stick it in you eye. OK, the company caught it, and hastily ordered a product recall. Their reps... went to stores where it was stocked, pulled it all off the shelves.. and problem solved, right? Wrong. The 'bad' batches were just tossed.. not quarrantined. Scavengers, maybe even unscrupuplous company reps., took that stuff.. re-packaged it.. and it started showing up in discount stores, or flea markets... you name it. That's just one example.. and that is without looking at all of the stuff that comes from China.. or anywhere in Asia. Blackmarket, un-regulated, or just total fakes... meds, food, clothing.. I believe there were even stories of foodstuff being shipped in covertly from Chernobyl. Oh, you must be eating right, you've got such a healthy glow. Sorry about the length of this.. When I 1st got ill, I started taking some name brand multi-vitamins... purportedly the 'best' you can get. But, I also kept a food diary... and something peculiar was going on. I was extremely sensitive to lactose back then.. and I slowly eliminated what I thought was every last trace from my diet.. but my lactose symptoms were still routinely showing up. Then, I checked the ingredients on my expensive brand name vitamins.. sure enough, there was lactose.. as a filler. I went and found a generic 'cheapy' brand.. with no lactose.. and whether it was psychosomatic or not.. the problem went away. Anyway, the gotchas are out there, but... you can either not do anything to avoid dealing with them.. or try something AND deal with the 'gotchas' if/when they show up... and meanwhile benefit from it. Just my take on things... but considering the landmines. beartraps and quagmires I stepped in over the years.. I am the absolute last one on earth I'd ever take any advice from, OK?
04-28-2013, 05:41 PM   #9
nogutsnoglory
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Kev it's true that even the most regulated products can and do encounter problems in terms of efficacy and safety. There is always some sort of product recall going on. I just feel that it's safer since atleast there is some regulation and oversight. Also, if let's say something was wrong with one of my med batches I immediately know based on a recall and a course of action can be put in motion. If something isn't right with LDN nobody will ever know and blame can never be placed. Maybe I'm being paranoid but I have had too many problems with drugs in the past and I'm scared. I'm seriously considering LDN if the Apriso doesn't work in conjunction with Cimzia. I hate the idea of going back on 6mp.
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