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I'm asking my gi for LDN on Tuesday-Any pointers, tips, or advice?

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Posted 3/2/2011 12:02 PM (GMT 0)
Hey everyone! I've been researching and of course reading on here about some positive results people have gotten by taking LDN for crohn's. Well, I'm ready to give it a try myself! I was just wondering what the best way to bring it up is? I don't want my GI to shoot it down before I'm able to explain it (he may not do that) I just want to be prepared. I'm taking print outs with me and highlighting main points, but what else should I say or do? Also I'm in Arkansas, and I have no idea if we even have a pharmacy that will compact it. Can I send a script out of state and have it mailed to me? Any advice will be greatly appreciated, thanks so much everyone in advance! wink

-Dana
Posted 3/2/2011 12:45 PM (GMT 0)
I don't really have any time tips on how to the approach the doctor, my doctor did his fellowship under Dr. Jill Smith, one of the research doctors of LDN, and she is the one that prescribes it to me. So that wasn't to hard to convince my GI. I wish you the best of luck, and it is becoming more common, or at least more people are becoming more aware of it I believe. Sounds like you have a good plan to start!

But I can share with you that yes you can get it compacted in another stare and mailed to you. I live in Maine, and my LDN is compacted in an Apothecary in PA, because that is where Dr. Jill had it sent to, since she is out the PennState Hershey Med Center.

Best wishes!
Posted 3/4/2011 2:10 AM (GMT 0)
May I ask what "LDN" is? TIA!
Posted 3/4/2011 8:28 AM (GMT 0)
It is Low Dose Naltrexone.
Posted 3/4/2011 12:36 PM (GMT 0)

does this medf help with pain, or strickly to help get off opiads and alchol. I'm trying to figure out if this drug is for drying out only.

AG

Posted 3/4/2011 2:04 PM (GMT 0)
go in with your ducks in a row. take in any copies of research that support LDN. let your doc know that this is an educated decision, and that you are going to go ahead with it. tell him that you are not going to hold him accountable for any issues you might have with it. let him know your plan, and tell him that you will be keeping a diary, so that if it is effective, he will have a viable alternative for his other patients.

Compounding is relatively easy. if you can find a pharmacy, not just a drug store, they should be able to do it for you. if not, you may have to brush up on your high school math and chemistry, and dilute it yourself.
Posted 3/5/2011 8:58 PM (GMT 0)
When having the LDN compounded, make sure the filler is not calcium, which interferes with absorption of LDN. My daughter uses a filler called Avicel.

Also, make sure the LDN is not timed release - it needs to be released all at once for you to benefit from it.

Some patients start with a lower dose, for instance, 3 mg, working up to 4.5 mg, but my daughter started off with 4.5 mg right away.

More tips can be found here: http://www.lowdosenaltrexone.org/index.htm#How_can_I_obtain_LDN 

Posted 3/6/2011 12:38 PM (GMT 0)
At
http://www.lowdosenaltrexone.org/gazorpa/PatientGuide.html
you may want to learn what to bring to your doctor when you want to share your decisions with him. LDN is not at all illegal, but is compounded from a 50 mg capsule into very often 3 mg or less sized tablets.

At Gazorpas site you may also want to read how to dilute your 50 mg naltrexone / Revia tablets into the prefered dose that you pull up with a good syringe. (good to read even tiny doses is the best ones to buy).
Some prefer to start at a very low dose naltrexone and increase the dose every week or longer time.

The dose most of us is using is 4.5 mg each night. The LDN dose is in the body for 18 hours. It's working longer though. You may want to increase to that dose or stop at 3 mg if you find it's enough for you. That's why most of us are wanting to get small doses of 1.5 mg to be compounded if you prefer the compounded dose.

Avicel is a good filler. Calcium is making problems, because it's released different. You can learn more on this at
www. youtube.com
where a pharmacist in the states is telling you all about LDN. Search for LDN or low dose naltrexone in the search field at Youtube.

The main info to the public is at www.ldninfo.org

Other useful info at: www.ldnscience.org
good info for your doc at that site.
Wish you the best,
Bee

*activated your links:)*

Post Edited By Moderator (Nanners) : 3/6/2011 8:54:15 AM (GMT-7)

Posted 3/6/2011 3:56 PM (GMT 0)
Is it true that if you go on this med, you can never use opiods to treat your pain? I have chronic pain (not gut pain) all the time and need to use opiods in order to even function daily.

Also, one thing I have read that it was better to start off slower as some folks have issues with bad dreams, then slowly work your way up. Njmom, did your daughter have any issues with starting out at 4.5 mg with bad dreams etc? Just curious. Hugs!
Posted 3/6/2011 8:41 PM (GMT 0)
If you dissolve the 50mg, as I've read a lot of ppl do. How do you take it? Do you take it with juice or water or just drink it down? I'm pretty sure my doctor will say no right now because I'm flaring, on prednisone, and on remicade. These drugs would seem to work against the LDN, is that correct? Should I not be in a flare when I start it? What other Crohn's meds are good to use with LDN? I may need to start another post haha sorry for all the questions. I'm really excited about this drug though and what is has done for others :)
Posted 3/8/2011 10:05 PM (GMT 0)
I just wanted to give a little update. I talked to him about it and he is open to trying it! Just as soon as we get this flare under control :) He even thanked me for being so educated and doing my research!! Can I just say that I love my Dr. :)
Posted 3/8/2011 11:15 PM (GMT 0)
Nanners, my daughter didn't have bad dreams, but she noticed they were somehow different...couldn't really explain how they were different. Other symptoms included some gas, gut rumbles - but no symptoms lasted longer than the first two weeks. We think the gut rumbles, in the first two weeks, might be a good thing, because it could be a sign the med is changing the environment (bacterial flora) of the intestine.

I'm so relieved she is back on LDN...her overall immune system is so much better! Even though she got run down flying to and from Australia, she didn't catch any colds and her Crohn's stayed under control.  

Posted 3/8/2011 11:27 PM (GMT 0)
Wow, congrats Dana1974, I am impressed your doctor was open to talking about it. It will be nice that when you try it you will have your GIs involvement.

My GI wouldn't even discuss it and said he saw no benefit or how it could work. What is ironic is that he himself has Crohn's disease. Unfortunately he is one that conventional meds have worked for him and of course he is not worried about side effects so he thinks thinks Humira and 6mp are great because they work so well for him.
Posted 3/9/2011 2:08 AM (GMT 0)
Great news Dana - good luck and keep us posted on how it works (or doesn't) for you.  I believe that my doctor is like yours and open to therapies like LDN.  They usually aren't her first course of action, but she is open to things like this when conditions or other options warrant it.
Posted 3/9/2011 2:55 AM (GMT 0)
Thanks everyone, I really want to give it a try. He started me on 6MP today, moving remicade up (4week intervals) and actually giving it one more shot. Just not sure it's working anymore. I'm still on prednisone, hopefully will get to taper soon. So flare be gone so I can try it :)
Posted 3/9/2011 7:21 AM (GMT 0)
if he doesn't give you it, go to another GI
Posted 3/10/2011 10:12 PM (GMT 0)
Nanners,

Naltrexone is using the same receptor in the cells as any narcotic medicine is. If you take even a low dose naltrexone (from 0.5 mg and to the optimal for us that usually is 4.5 mg a day) or a full dose on 50.0 mg or more, and if you take this med in the evening and take a narcotic pain medicine the day after, the pain medicine will not work as you are used to. And the reason is, that the receptor is already occupied by naltrexone that is working as a partial agonist; means it's not letting any narcotics or narcotic meds work.
Nanners, I am not sure your pain will be that hard anymore if you tried LDN. May be using tramadol besides LDN will help you ridding all the pain. LDN is able to reduce a pain level from higher to a lower felt degree. Adding a non narcotic pain med to help reduce the rest of the pain may of course be better and necessary.

And to the other things you asked: Not everyone get side effects by taking LDN. The hardest side effect is considered getting vivid dreams everytime you're upping the dose. I did get vivid dreams when I had my first pill, the first night, the dreams were not at all scary, rather funny, so I wake up laughing. The next time I had vivid dreams again was 3 weeks later when I upped from 3.0 mg to 4.5 mg. One more early morning waking up having dreamed a lot. Some funny stuff and some scary.

Getting a sleep disturbance like vivid dreams or too much energy getting trouble falling asleep is troubling 25 % of the patients, often this is going on the first weeks. I have never heard of anyone getting any harder side effects than this. Some is also waking up in the middle of the night feeling too boosted and are awake the next hour.

Dana_1974

I will not recommend using remicade while on LDN. You could discuss with your doctor whether remicade is helping you or not, since you're flaring. If you prefer to stop using remicade, please ask your doctor if you could restart remicade if LDN won't help you. I know some people are using humira and LDN with great results, but I have just heard of one person using remicade and LDN, and it didn't help him. And we have learned that the biologics and LDN is working opposite due to the immune system. But to be 100 % sure, can't you take a phone call or write a mail to Dr. Jill Smith and ask her?

I know that prednisone and LDN is ok in small doses. (and I have done it myself many times). Every time I have started to flare I have used a treatment with LDN and 40.0 mg - 30 - 20 - 15 - 10 - 10 - 10 and down to 5.0 mg and then used 5.0 mg for a while and down to 5.0 mg every second day with my doctors blessings. And it have always stopped my flares. My flares are coming twice a year, so I have tried this app. 5 - 7 times. And it has been working every time.

What I am trying to say now is that an average flare is often needing prednisone for 3 months. Using LDN and add prednisone during a flare is leading to a months use of prednisone instead of 3. I got that change. I have used LDN since sept. 2007. And have never stopped. It has been heaven sent, I am sure:-)

There is a great patient site at
www.ldnscience.org

why not read this site to learn how a lot of other patients with all from lupus to fibromyalgia...are coping with LDN...:-)

Post Edited (BeeSting) : 3/10/2011 3:15:53 PM (GMT-7)

Posted 3/10/2011 10:25 PM (GMT 0)
Well Bee I suffer with chronic pain due to not only Fibro, but I have two knees that are desperate for replacements that I am trying to hold off for awhile with cortisone injections, as well as ALOT of arthritis all thru my body. So my pain meds are necessary. Also Tramadol tears up my guts so that med is out. Oh well, my Asacol is working well for me, so I will stick with it. Thanks anyways!
Posted 3/13/2011 9:03 PM (GMT 0)
I just have to mention this; LDN is reducing pain quite much, LDN is also helping a lot on those with fibromyalgia, just google it, I am sure you'll find people succeeded on this LDN versus fibro. LDN can also be used with Asacol. The only problem here, as far as I can see is that you need to find a pain pill that is not a narcotic one, but that is able to reduce the restpain that LDN is not able to take in a few cases. I think there are a lot of OTC pills that is much better to the stomach than Tramadol. I am not familiar with any brands in your country, but I know it has to be paracetamol pills. I am not writing this trying to convince any person here, but I am writing this as an example to show how anyone could manage to find the right combinations of meds to try to get a better health.
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