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LDN - low dose naltrexone for Crohn's

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Posted 2/10/2011 2:53 AM (GMT 0)
LDN

Is anyone prescribed this drug for treating Crohn's? I need to find a dr. to prescribe this to me or an online pharmacy that will sell this to me.

It's a better treatment for Crohn's & autoimmune diseases than biologics. I will not go back to Remicade. nono
Posted 2/10/2011 3:33 AM (GMT 0)
is that the drug used for alcohol dependence and opioid dependence.
Posted 2/10/2011 3:57 AM (GMT 0)
yes
Posted 2/10/2011 4:01 AM (GMT 0)
um k ru in the untied states or somewhere else
Posted 2/10/2011 1:41 PM (GMT 0)
I responded to your other thread but I didn't see this.

I live in Southern Maine, but I have family that lives by the Penn State Hershey Medical center, so I get my LDN prescribed by Dr. Jill Smith, who is one of the main researchers for LDN. I get it delivered from an apothecary in PA. My GI doctor at home did his fellowship under her so it wasn't much of a hassle.

I just want to add that not everyone has more success with LDN than other options like biologics. So just keep an open mind that this might not be the ultimate answer you are looking for, but I'm not saying that it won't be.

Wish you luck in your quest : )
Posted 2/10/2011 3:34 PM (GMT 0)
I am also using LDN and I happen to know that you may get your GP writing a script, but you need to do your homework prior to this by do some research yourself and return to your GP with information that is valuable for your doctor.

Please, go to www.youtube.com write Low dose naltrexone in the search field and you will find a pharmacist explaining where in the U.S you can buy your medicine. You can also read these pages to find more info to bring to your doctor:
www.ldninfo.org
www.ldnscience.org
www.ldnresearchtrust.org

and if you want to find what other Crohnies have experienced when used LDN, choose Crohns Disease at:
www.ldndatabase.com

Yes, this medicine is a low dose of what doctors are prescribing to those wanting to block heroin from working. Other people are using it for several different diseases, almost 200 autoimmune diseases is reacting in a positive way on a LDN treatment. LDN is often calming down our disease, and can be used with some of the medicines that we are offered. LDN can NOT be used with narcotic pain meds.

The best thing to do is to cooperate with your GP, but don't overload him/her with info. Ask him to read the most important parts that you could highlight for him, those parts are: is this medicine in doses of 3 mg - 4.5 mg each day legal to prescribe? Is it giving the patient any side effects? In that case, - what side effects? Is it possible to combine with other medicines? What medicines? What medicines is not possible to use with LDN....
good luck, the best / Bee
Posted 2/11/2011 9:44 PM (GMT 0)
I'm in Los Angeles, and my dr. just prescribed this week (and as it happens, recommended a compounding pharmacy in beverly hills that made it for me same day). I was hesitant to ask her, but she was good with it. She says as a drug it's been on the market so long that they know it is safe, esp. in small dosage, so she doesn't see why I shouldn't try. I think a lot of drs. are open to prescribing it, even if they are skeptical. I'm skeptical, but it's hard to ignore all the people on this forum and others who have had varying successes. I talked to my colorectal surgeon about it as well, and she knew nothing, but was interested and encouraging. She knows that my next step is humira or remicade if I have another big flare, and encouraged me.

If your GI isn't open to it, you should try to find another dr. in your area. A good doctor will at least be open to reading something about it before they make a decision. I would also think it's worth talking to your internist, as they could prescribe it as well. Good luck and good health!
Posted 2/11/2011 11:17 PM (GMT 0)
Thank you for your suggestions everyone. I really do appreciate any and all feedback!

Thanks again
Posted 2/22/2011 3:20 PM (GMT 0)
I started using LDN - 4.5mg - hypo-allergenic formulation  - a few weeks ago, with very promising results.

Since December I had been undergoing a severe UC Flare with lots of bleeding - bleeding was at a 10 (scale 1-10, 10 being worst).

I am now at a 2 with the bleeding.

I would definitely urge anyone to do their research and fin the information on LDN, and give it a try.

IF you need a compounding pharmacist, one of the best one in the country is Skip's Pharmacy in Boca Raton, FL.

You can look them up, and call them, and they can recommend a physician who prescribes LDN.

My Gastro refused to give it to you, so I had to get it elsewhere - from an osteopath.

Good luck to you!

Keep us posted on your progress, if you got the LDN, and your results.

Posted 2/22/2011 7:05 PM (GMT 0)
You can buy LDN everywhere. I live in Norway, I buy it there, we have one compounding pharmacy doing the correct mix. It's of great importance that you're getting the correct filler, and that we who have this DD gets it without lactose fillers, many of us are reating with increased diarrhea if we use a LDN compounding with lactose.

To figure out what to expect from your pharmacy, look at this video as a part of your research, the video is made of a pharmacist in the U.S:


Here's a video of the pharmacist informing you about LDN:

http://www.youtube.com/watch?v=51YirTASydo&feature=related



Here's a video from www.ldnscience.org, telling how and why LDN works:

http://www.youtube.com/watch?v=xr-n8jMLenU&playnext=1&list=PL26C7FCEFCAC93D33


when you are watching these video a whole bunch of videos will pop up....all of them of LDN users, really excited persons telling you how it changed their lifes.
Posted 3/2/2011 12:11 AM (GMT 0)
checking back in...it's been 3 weeks, and I'm getting some traction on this nasty flare I've been in. Hoping the ldn is responsible!
Posted 7/22/2011 1:13 AM (GMT 0)
Greetings all. I'm hoping this listing finds ASTAR as I would love to get the name of the Doc. in Los Angeles that might help me try LDN for my Crohn's.

Many thanks

female age 51

Crohn's ...aaargh

Posted 7/22/2011 2:41 AM (GMT 0)
I gave my GI all the information but she refused to prescribe LDN so I ordered it online without a prescription at alldaychemist.com . They are very cheap and I believe they are in India. I bought a years supply for about 80 buck and 20 of that was shipping! I haven't tried it yet because I am managing right now but as soon as things get out of control, I plan on compounding it myself and giving it a try.

Good luck!

Posted 7/22/2011 2:43 AM (GMT 0)
PMEDIC...thanks a ton! Wishing you all the best!
Posted 7/22/2011 2:56 AM (GMT 0)
Your welcome Tracy4Now! If you order, I suggest ordering a years supply because the 20 buck shipping is a flat rate so if you order one pack or 10 packs, it will be the same cost. If you need help compounding, just dissolve the 50 mg pill in 50 ml water and you have 1mg/ml. You can use a baby tylenol dropper that is already marked 1 ml.
Good luck!
Posted 7/22/2011 8:20 PM (GMT 0)
Dr Leo Galland in nyc will prescribe it but he doesn't take insurance. There is a list of pharmacies in NYC here:

http://www.lowdosenaltrexone.org/index.htm#How_can_I_obtain_LDN

Has your GI refused to prescribe LDN?

My daughter has it prescribed from Galland, but will probably be insisting her regular GI start prescribing it because she is doing so well on it and is tired of paying out of network costs for Galland.

The LDN got rid of her symptoms and kept her from flaring, but the labs still showed higher than normal CRP. She added Pentasa to the LDN and that combo brought her CRP down to the normal range - for the first time since before she developed Crohn's, her labs also suggested she is now able to absorb B12 orally, without having to go for monthly B12 shots, like she used to.

I'm not confident LDN can stop Crohn's dead in its tracks, at least not by itself and perhaps not even with SCD diet.  

 

Posted 7/22/2011 10:18 PM (GMT 0)
astar, did you go to a GP or a GI? I asked my GI and she was dead against letting me try LDN. I am in the LA area too. Is there any way you could send me an email with your doctors name? I would love to see if she is covered by my insurance - maybe I will be able to try LDN.
Posted 7/22/2011 10:53 PM (GMT 0)
Greetings all. L.A. girl here.I'm determined to find LDN andI'm not quite ready to order it from India.

 

I called Skip's Pharmacy in Florida and they gave me the name of 2 docs who work with yo over the phone and prescribe LDN. One is Dr. Kristi Wrightson in Santa Barabara and she is on my insurance. I will speak to her on Monday and let you know how it goes. The other name in PA is Dr. John Sullivan.

Posted 7/22/2011 11:10 PM (GMT 0)
I read in earlier post about you cannot use opiad pain med's, what happens if you have cramping thing happen, I will not suffer thru those things, they're too painful for me, so I have to take OPIAD pain med, they're the only one's that work for me. I'm interested in LDN, but if I had to choose, I would choose pain med's, I know that works short term. But what happens, the LDN doesn't work or pain med's won't work?

AG
Posted 7/23/2011 11:39 AM (GMT 0)
Artist guy,
I am so sorry that your pain is this hard. And your right, LDN should not be used with narcotic pain meds. The reason is that naltrexone is bloking the opioid receptors for a few hours after taking LDN, and if you use the narcotic pain medicine during these hours, your pain will not be reduced.

If you still want to try LDN, as this medicine is without any long termin side effects, you could consider to use pain meds without any narcotic substances either during the entire day or during the hours when you take your LDN.

Low Dose Naltrexone is so worth a try for many of us Crohnies. It's just giving a few side effects intially, and these side effects are mild, and lasting for a few weeks. One of the typical side effects, affecting 20 % of the users during the first week are sleep disturbances. Some people get insomnia and some get more tired than before. Now I have learned that tiredness may occur if you upping your dose too soon, so it's good to start slow, and gradually during a few weeks ----> first months increase the dose to a tolerable level, all depending how sensitive you are to medicinces. Having insomnia, or difficulty falling asleep is often helped by using melatonin or a mild sleep aid.

Anyway,remember, it's just one of five that is getting these mild side effects, and during the first weeks only.

You can also take your LDN earlier in the day, you don't have to take it in the evening as the advocates at yahoo first suggested. At yahoo there is a group supporting us using LDN, a LDN and IBD group. Anyone wanting more info could register as a member and get great advices and help from Crohns patients that have used LDN for years.

More LDN info: for doctors
www.ldnscience.org

Post Edited (BeeSting) : 7/23/2011 3:44:00 PM (GMT-6)

Posted 7/23/2011 9:26 PM (GMT 0)
On LDN since June 28 of this year. It is helping me with CD. I have not seen a great improvement, but the symptoms are improved ! I got the med. from my PC, the GI did not want to prescribe LDN for me. I did some research and submitted them to the PC, who had not problem with giving the med. I live in New York area and get the LDN from a pharmacy there. The cost is much more  affordable, ( about $ 40) compare to the price of Remicade and Humira!

 

Post Edited (metoo50) : 7/23/2011 3:29:48 PM (GMT-6)

Posted 7/23/2011 9:50 PM (GMT 0)
Tracy, shoot me an email, I have the LDN doctor list. I don't know who astar went to but I have a list from someone else. One of the doctors is covered by my insurance but he's not too local, that's why I was wondering who astar saw.
Posted 7/23/2011 10:45 PM (GMT 0)
metoo50,
LDN could be used with a mild Crohns medicine. Could also be used with one of the typical diets suggested here at hw. You may want to add omega 3 and vitamin D, both great in reducing inflammation.

So is boswellia serrata, curcumin and glucosamine.

LDN is seldom a stand alone medicine for CD, but I'm sure you know. Just avoid using LDN and the hard guns (remicade and humira and so forth)...
Posted 7/27/2011 6:39 PM (GMT 0)
thank you ! I am taking vit. D, cod liver oil & 5 mg. prednisone (among other med.)  daily. Remicade & Humira has not worked for me !
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