I'm super interested in trying LDN while I wait to hear back from Northwestern..I mean why not? Who knows, I may not even need any radical treatment! It's worth a try and it would eliminate my need for narcotic pain killers, how cool would that be? I called my nurse tonight and left her a message so she would have it in the morning...I told her what the drug was, what it was called, that the clinical trials went well, and that I could order it from Canada but I'd REALLY like for my doctor to prescribe it. In other words, I let her know I would try it regardless so make it easy for me lol. Hopefully she'll call me back tomorrow, no later than Monday atleast with an answer from my doctor. He seems pretty willing to experiment with me...i mean this is way less risky than a stem cell transplant, right? So say a prayer he says yes and it works. Below is some info about LDN and some testimonies that offer good info too!
Article:
Use of naltrexone reduces inflammation in Crohn's patients
Thursday, May 19, 2011
Hershey, Pa. -- Naltrexone reduced inflammation in Crohn's patients in a research study at Penn State College of Medicine.
Crohn's disease is a chronic inflammatory condition of the gastrointestinal tract causing abdominal pain, diarrhea, gastrointestinal bleeding and weight loss. Treatments for Crohn's disease are designed to reduce the inflammation but may be associated with rare but serious side effects, including infections and lymphoma. Research suggests that endorphins and enkephalins, part of the opioid system, have a role in the development or continuation of inflammation.
Naltrexone is a drug used to help recovering alcoholics and drug users stay clean. It inhibits the body's opioid system that regulates pain and is involved in cell growth, repair and inflammation. Naltrexone binds to a protein receptor that blocks the effects of opioids, including the body's own enkephalins and endorphins, substances that reduce pain and produce a feeling of wellbeing.
"Although the cause of Crohn's disease is unknown, research suggests it involves a complex interplay of environmental, genetic, microbial, immune and nonimmune factors," said Dr. Jill P. Smith, professor of medicine. "We hypothesize that the opioid system is involved in inflammatory bowel disease and that interfering with an opioid receptor will lead to the reversal of the inflammation."
Researchers studied 40 patients with active Crohn's disease. Patients received either naltrexone or a placebo for 12 weeks. All patients then continued on naltrexone for an additional 12 weeks. This was a double-blind study with neither the patient or healthcare provider knowing which treatment was being received.
Eighty-eight percent of those treated with naltrexone had at least a 70-point decline in Crohn's Disease Activity Index scores compared to 40 percent of placebo-treated patients. CDAI is a point system used to quantify symptoms in Crohn's patients. Researchers noted no statistical difference at four or eight weeks of treatment, suggesting a response requires at least 12 weeks of treatment. Results were published in the journal Digestive Diseases and Sciences.
Gastrointestinal inflammation was evaluated by appearance of the intestine on colonoscopy and scores from biopsy specimens. After 12 weeks, researchers noted no change in those taking a placebo. However, 78 percent of those on naltrexone experienced healing in the lining of the intestine.
For those patients who received a placebo for 12 weeks and then were placed on naltrexone for the following 12 weeks, 70 percent experienced at least a 70-point decline in the CDAI score and healing of the colon as seen on colonoscopy. Patients who continued use of naltrexone for an additional 12 weeks (24 total weeks) had a further 75-point decline in CDAI scores, leading to remission (score of less than 150) in 50 percent of the patients.
"We report that naltrexone improves clinical and inflammatory activity of subjects with moderate to severe Crohn's disease compared to placebo-treated controls," Smith said.
The researchers are planning clinical trials to look at use of naltrexone in children with Crohn's disease and have secured orphan drug status from the Food and Drug Administration for the use of naltrexone in children with Crohn's disease. Smith and Zagon hold a patent for the use of naltrexone in inflammatory bowel disease -- Crohn's disease and ulcerative colitis.
The National Institutes of Health's Broad Medical Research Program funded this project.
Other researchers on the project are Ian Zagon, Ph.D., Department of Neural and Behavioral Sciences; Sandra I. Bingaman, R.N., Aparna Mukherjee, M.D., and Christopher O. McGovern, B.S., Department of Medicine; Francesco Ruggiero, M.D., Department of Pathology; and David Mauger, Ph.D., Department of Public Health Sciences.
http://live.psu.edu/story/53494
Testimonies: (Each color is a different person)
I've used it for over a year now. I would highly recommend you try it first along with a restricted sugar diet. It has made all the difference for me and many others. I have crohns, but LDN is good for any autoimmune and many other types of disease. You'll be able to find LOTS of good info and people to answer any questions you might have at: http://health.groups.yahoo.com/grou...
Be sure to check out their LINKS and FILES sections...so much good stuff! If your GI won't prescribe, others will, or you can also order through Canada without a Rx...let me know if have any questions :)
I have also used LDN for over a year very successfully. I also use SCD and VSL #3. I think that these 3 things have really turned my health around. My diagnosis is pancolitis. The only other medicine that I take is 400mg of asacol once or twice a day. Once you try it, it may take a couple of weeks to see a difference but stick with it. I was in your situation and they were talking about starting Remicade. I am so glad that I went on LDN. Please remember it is not an instant cure. I still had to change my diet and practice good self care but it made a huge difference. Good luck!
I have been taking 4.5 mg of low dose naltrexone daily at bedtime. It has given me my life back and kept me from meeting surgeons. You can read my story in detail on my blog at http://tinyurl.com/3w8v6v2 . My fear was exactly what your situation is now. My PCP wouldn't prescribe it and my GI wouldn't even discuss it. These people not only don't think outside the box they HIDE inside the box. The time may come when they change, but not in time to save your colon. If you are on Facebook there is a closed group you should check out: "Got Endorphins? LDN" My lesson: I am the only person responsible for my health. The days of presenting myself passively to a doctor and plaintively asking to be healed are over.
I use the 50 mg and dissolve it also. Very easy and MUCH cheaper this way. Also, it's better to do it that way because not everyone does well on 4.5 mg. I can't tolerate it. I started at 1.5 mg and it worked wonders. I slowly increased up to 3.5 mg and noticed I was having more and more problems, so I went back down in increments until I felt the best. I've found that 2.25 mg works the best for me. So don't be afraid to experiment with the dosage to find the one that works for you. I get mine from River Pharmacy in Canada
I kept a diary of my starting on LDN. Its titled LDN and me, a personal diary. You should be able to find it in the Treatment section (Why it's not in the LDN section I'll never know?)
Side effects (for me) was the occasional vivid dream, but they soon faded away. Aside from them, no side effects. Nada! Zilch! And I've been on it daily since November of 07.
My dose is 4.5 mg. That was the dosage used in the original Penn State study that Dr Jill Smith did. I've heard of people going lower, but I don't know if the lower doses work.
I took a printout of the above study, the name of a Canadian compounding pharmacy & the name of a US doctor who consults via telephone to my GI. She looked at the study (she went through the entire study posted in the American Journal of Gastro-eneterolgy) and agreed to put me on it AND convinced a local pharmacy to compound it.
It has been a success story for me since going on it; so much so that my GI placed more patients on it since. To date, all of us are doing extremely well.
Side effects (for me) was the occasional vivid dream, but they soon faded away. Aside from them, no side effects. Nada! Zilch! And I've been on it daily since November of 07.
My dose is 4.5 mg. That was the dosage used in the original Penn State study that Dr Jill Smith did. I've heard of people going lower, but I don't know if the lower doses work.
I took a printout of the above study, the name of a Canadian compounding pharmacy & the name of a US doctor who consults via telephone to my GI. She looked at the study (she went through the entire study posted in the American Journal of Gastro-eneterolgy) and agreed to put me on it AND convinced a local pharmacy to compound it.
It has been a success story for me since going on it; so much so that my GI placed more patients on it since. To date, all of us are doing extremely well.
if you try LDN, be patient and give it time to work! I started off at 1.5 mgs for 2 weeks, then increased to 3 mgs for weeks and since then have been at 4.5 mgs. 4.5mgs is considered (generally) to be the optimal dose. I had very minro side effects like appetite suppression and vivid dreams, but that went away within a month. Hopefully, there will be more testing on this substance in the future that will work out the dosing. But for now, 4.5mgs is generally considered standard. However, should you reach 4.5 mgs and feel side effects that are unbearable that you did not feel at 3 mgs, you may consider taking the lower dose. If you are really concerned, you may want to get your LDN script written for .5mgs so that you can increase your dosage by .5 mgs and increase very slowly.In addition to LDN, I have received intravenous Alphia Lipoic Acid treatment last May--I am currently still doing the treatment, only orally now. I do feel that my insides are SLOWLY changing--I was told by Dr. Berkson (who gave me the ALA treatment) that this is a slow working therapy and takes time. That being said, I feel different. But I do still have some minor bleeding and mucus and slight pain occassionally. But it is nowhere near where I had been. I am getting better very very very slightly everyday. My treatment regimine has taught me to be very patient.
LDN is a very diluted form of the original drug Naltrexone, which is used for substance abuse in its much higher original dosage. Drugs are often compounded by the pharmacist when the manufacturer does not make the dosage desired, or when a manufacturer does not make a particular formulation of a drug.
Here the important thing is to use one of the approved LDN pharmacies on the www.lowdosenaltrexone.org website. There is no reason to use any other pharmacy, as you can have it delivered anyplace. I use “The Compounder” in Aurora Illinois. “Skip’s Pharmacy” in Florida is another good source. Don’t risk your results using a pharmacy that has to learn how this is done properly.
It is generally thought that six months and even a years time is needed to see if LDN is going to be beneficial.
That is a disadvantage, but it also has many advantages that make it worth trying.
LDN is a very diluted form of the original drug Naltrexone, which is used for substance abuse in its much higher original dosage. Drugs are often compounded by the pharmacist when the manufacturer does not make the dosage desired, or when a manufacturer does not make a particular formulation of a drug.
Here the important thing is to use one of the approved LDN pharmacies on the www.lowdosenaltrexone.org website. There is no reason to use any other pharmacy, as you can have it delivered anyplace. I use “The Compounder” in Aurora Illinois. “Skip’s Pharmacy” in Florida is another good source. Don’t risk your results using a pharmacy that has to learn how this is done properly.
It is generally thought that six months and even a years time is needed to see if LDN is going to be beneficial.
That is a disadvantage, but it also has many advantages that make it worth trying.
***I want to make a note that I find interesting about this testimony...he says that it typically takes 6 months to a year to see results..but several Crohnies have said it had a quick response...so IDK??
My son has been on LDN since August 2009, he has been in remission for most of that time. He has not been on any drugs other that Cipro and Flagyl (for a fistula/abscess) he was on these drugs for 3 months before we started LDN. We saw results with the LDN within 4 weeks, but we were also following SCD and had started hyperbaric oxygen therapy at the same time.
Mitch starts to feel worse if we try to take out one of these things, tried adding in a few new foods - they didn't agree with him. Hyperbaric oxygen therapy was started specifically to help heal the fistula.
He did well with just the combo of SCD and LDN, but his CRP never came down to a normal range, and he still had urgency in the morning.
With the addition of HBOT it seems to kick him over to real remission, where he has no urgency, CRP is normal and he's got a great appetitie and energy.
In the past year and a half he has not taken a break from LDN.
Also, his LDN was compounded incorrectly last January (lactose was used as a filler) and he definitely was heading into a flare - CRP went up, urgency morning and night, and starting to get stomach pain and nausea again. Once we got that corrected he started feeling better within 2 weeks. Took a lot longer for the urgency to go away though.
So for us - LDN was not a miracle drug - but in combination with a few other things it's working great.
Mitch starts to feel worse if we try to take out one of these things, tried adding in a few new foods - they didn't agree with him. Hyperbaric oxygen therapy was started specifically to help heal the fistula.
He did well with just the combo of SCD and LDN, but his CRP never came down to a normal range, and he still had urgency in the morning.
With the addition of HBOT it seems to kick him over to real remission, where he has no urgency, CRP is normal and he's got a great appetitie and energy.
In the past year and a half he has not taken a break from LDN.
Also, his LDN was compounded incorrectly last January (lactose was used as a filler) and he definitely was heading into a flare - CRP went up, urgency morning and night, and starting to get stomach pain and nausea again. Once we got that corrected he started feeling better within 2 weeks. Took a lot longer for the urgency to go away though.
So for us - LDN was not a miracle drug - but in combination with a few other things it's working great.
More info on these sites:
http://www.ncbi.nlm.nih.gov/pubmed/17222320
http://www.sciencedaily.com/releases...0902133047.htm
LDNscience.org
www.lowdosenaltrexone.org
http://www.crohnsforum.com/forumdisplay.php?f=32 (SOOO many posts about LDN for Crohns)
http://www.dailystrength.org/treatments/Low_Dose_Naltrexone
Go to dailystrength.org. Join the site. Join the Crohn's and UC Support Group. Type in LDN in the search box beside discussion under the support group page...you will find soooo much info at your fingertips!! And the site is a true blessing!
SIDE COMMENT: WHAT IS ALA??Alphia Lipoic Acid? ANYONE??? I'm going to do research and post!!!
