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Crohn's Disease Forum » Treatment » Low Dose Naltrexone » I got a prescription for LDN today!


09-06-2013, 01:03 AM   #1
akduck
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I got a prescription for LDN today!

Had a 2 1/2 hour appt with an alternative medicine doc in Anchorage today, and got a prescription for LDN!! I am so happy! I hope to have the LDN in the next week or so, and get started on this journey.

I am thankful to all of you who post on here, and the education I am getting about what to expect in the next few months.

I am exhausted after 6 hours on the road for the appointment, but I know it is worth it. I will post as I go with this, and probably have more than a few questions.
09-06-2013, 04:09 AM   #2
Kev
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Congratulations. Best wishes. If the compounding is done right, and it is Naltrexone, not Naltrexone SR... and you don't have an overbloom of candida, then at 4.5mg over the span of 12 weeks.. taken just before you go to sleep... the statistics say you should see major improvement. You may feel worse, much worse, before you get better. I did. Some folks report feeling wired, or sleep disruptions, I only had vivid dreams. Others say they experienced fatigue. I was drained, wiped when I started on it, and experiencing pred withdrawal too. However, my gut instinct is that the feeling of fatigue stems from the body turning things around, and starting to fight the disease. Not a side effect per se... it sort of makes sense. In the past, your immune system did not attack the IBD. It attacked you.. But, I'm not medically qualified, so this is just a laymans opinion, OK?
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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
09-06-2013, 09:42 AM   #3
akduck
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Thanks Kev! I think I have a lot going for me as I start this - I am having very few symptoms, and no pain, so getting worse before it gets better shouldn't be to hard to deal with is what I am thinking...(hoping). I am good on the candida issue, so no worries there, and the dr. gave explicit directions for the compounding on the prescription.
I like your theory of getting worse before it gets better is the LDN causing your body to fight the disease!
My work is on board with the probability that I am going to have a few rough weeks when I start this, and they are 100% percent behind me doing this. They were great when I was at my worst Jan - August last year, and that helps.
I understand that what you say on here is "just" your opinion. But, for me, hearing the experiences of you, and others on here, is a big deal. I think that we need to be advocates for ourselves, and this forum and the people on it have helped me more than I imagined! I like your "pay it forward" way of thinking, and appreciate your posts.
Have a great day!
09-06-2013, 02:15 PM   #4
rygon
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Awesome news! Hope it goes well for you
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09-06-2013, 04:46 PM   #5
Kev
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Glad to hear your workplace is supportive. Mine wasn't. As soon as I was diagnosed, my position, my career... evaporated. It was a knife in the back blow, devastating at the time. But, in retrospect, it was the best thing that could have happened to me.
09-06-2013, 09:04 PM   #6
akduck
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Thank you rygon - I will be posting as I go through the journey!

Wow, Kev - sorry to hear that your former employer was so harsh... but glad that it turned out so good for you. I can't imagine what I would do if that happened at this stage of my life...
09-06-2013, 11:17 PM   #7
Searchingforhealth
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Akduck, wishing you the best. Keep us posted please. My daughter will be starting in a few weeks.
09-06-2013, 11:48 PM   #8
Justanothercp
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I don't know a lot about LDN. Do you know if most/any issuances cover it? And do you know if you can take it and Remicade at the same time?
09-07-2013, 07:26 AM   #9
Kev
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Here, since it is a custom compound, and does not have a DIN #, no insurance company will cover the cost of it. I currently pay 75 cents a day.. (CDN). Small change really when you think about it.

As for taking it with the biologics, there is some debate. According to the doctors, this combination will not result in adverse reactions. So, taking them together shouldn't put you in the ER. But, a lot of folks (laypeople).. myself included.. suspect that taking LDN with biologics would only slow, minimize the chances/rate at which the LDN will work. If I recall correctly... (and I could be wrong, I have been wrong before..but it was so long ago that I've forgotten when/what it was about.. KIDDING) Skips Pharmacy agreed with the consensus of us laypeople. So, the short answer is.. there is no short easy answer.

My thoughts... if you are on Remicade, and it is working, stay on it, and don't muddy the waters. If it stops working, and you are looking at alternatives, then maybe try LDN.

One of the prime benefits of going to LDN is avoiding potential side effects. If you mix it with 'standard' meds... there goes the benefit. I know that this disease can frighten one so much... that you are willing to do anything, to try anything, to make it go away. But, before taking any major steps.. stop, take a breath, and weigh the implications of what you are considering. My understanding is... once you start Remicade, you must stay on it... coming off of it is pretty much a one way street. If it is working for you, my advice would be not to do anything... ANYTHING.. that might rock that boat. The risk is too great. I mean, the success rate for LDN is high, but the knowledge base of using LDN with biologics is... tiny. It is all theoretical. There have been no studies, no tests I know of. So, taking it in combo MAY be safe, but what if it causes an issue that can only be resolved, for certain, by coming off both drugs.. that could be a disaster. I am confident... but have no proof.. that you could go back on LDN afterwards... but the Remicade... from what I've read anecdotally... that door might be closed forever after.

I hope this helps... I wish I had a definitive answer. I wish there were some hard facts, some established science. Not theories. Tests, results, studies, statistics. Things that one could look at... weigh the pros and cons.. then take your best shot. Unfortunately, the sad reality is... LDN is so rarely used.. combining it with other drugs even rarer, that the 'knowledge base' just isn't there yet. Playing guinea pig with something that has been tested... that is one thing. Been there, done that. But playing that role when it hasn't been tested... and doing so removes the prime benefit of going on LDN.. makes no sense whatsoever. If Remicade isn't working, it isn't working. But, if it is, then don't take chances. If it is working, just not as well as you want, need it to... then consult with your doctor about what other meds it has been tested with, can be combined with.
09-07-2013, 09:48 AM   #10
Justanothercp
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Kev,
Thank you for the input. You've given me a lot of food for thought! I am in a fairly decent holding pattern right now, and you are probably right in that I shouldn't rock the boat. Currently I am on Remicade, Lialda, Omeprazole, Budesonide and an assortment of vitamins/minerals etc. I guess I should just continue to roll with it. I am so, so, so thankful everyday for being able to get up and function because I have been in that place where I couldn't!

Thanks again.
09-07-2013, 01:57 PM   #11
Kev
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No problem. Glad to be of some (any) help. One thing I'm fairly certain of, Remicade is not a drug to take chances with. From what I gather, once on it, stay on it as long as it is working.

The problem with LDN is the struggle to find a doctor who will prescribe it, then finding a competent pharmacy to make it, then toughing out the initial period to see if it will work.
I mean, like every other drug, there is no guarrantee it will work. It doesn't for everyone. I would hate to think someone came off a drug that was working, even if not 100%, to try another drug... and the new one didn't work, and you couldn't revert back to the old one.
09-07-2013, 08:20 PM   #12
akduck
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Searching - I will post how I am doing when I get started. Hope it goes great for your daughter!

Justanother - I am just going to pay for mine. I am hearing that it's around $30 a month, and I can handle that fine.

Kev - I think you always give great advice! Do you ever have a drink / wine /beer every now and then? I'm not much of a drinker, but wonder if the LDN has any affect on it? Also, do you ever eat raw veggies? I juice, but I miss salads... hoping to give that a try several months down the road!
09-07-2013, 10:19 PM   #13
Kev
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I do... in fact, I had a few last June, to celebrate my birthday. I avoided alcohol for the most part while I was sick... but since LDN, I have had the occasional drink, no issues for me on that part. Thing is... you take LDN before you go to sleep, it does its thing while you are asleep, then in dissipates. And it is such a small dose. I 'believe' the daily dose for treating dependancy was 3 X 50mg a day... that would last me over a month.
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