Low Dose Naltrexone

After 8 years Remicade stopped working for me. I switched to LDN and in two months was feeling MUCH better. LDN also helped my arthritis. My pain is all but gone these days. I no longer need opoids and only take Tylenol intermittently. After seeing what LDN did for my arthritis, my wife started it too and her arthritis pain is gone also.

Hey Iram,

That's a great question. I am fortunate to have an openminded doctor who is against immunosuppressants, and was intrigued to hear my desire for LDN. As far as your doctor is concerned, has he rejected prescribing it for you? I can only say that it is safer than aspirin, has no known side effects, and is cleared by the FDA in doses ten times as large. True, those doses are for other ailments, but a German study was paralleled by a Penn State study that showed 90% improvment in symptoms, and 69% remission in colitis patients. From all accounts, it is a completely safe drug, so turn to your family practitioner if your GI is not willing.

As far as it being experimental, it's only experimental in the sense of it's application to Crohn's or autoimmune disorders. This is different than an experimental drug being used for the first time ever. Naltrexone has been around the block for awhile, and no damaging side effects are known. I know that it has virtually wiped out my pain and my stool is now completely solid. It took a little bit of time for me, about eight weeks before I saw real noticable improvement, but now that it's here, I'm feeling great. Tell them you've read too many testimonials about people directly in your position that have benefited, and the worst that can happen is that it doesn't work. It's not going to pickle your liver, or mess with your genes.

Having said that, I tried to be as proactive as possible about it before I saw my doctor. You can go to the LDN website and see a pharmacy there who will give you the name of a doctor who will prescribe it over the phone for you if needs be. I did this, and spoke with the doctor herself, and she said point blank "If your doctor won't prescribe it for you, I will, I've seen too much improvement in patients not to prescribe it." I think it's an eighty dollar consulation fee on the phone, and three months of LDN cost me $41. So, probably less than a copay for 6MP or Remicade. I was able to get my family doctor to prescribe it, since it's a relatively safe substance. I can attest to much improvement.

I hope this helps, encourages you, or answers your question. There are ways to get it if your GI is unwilling. I think it is really, really helping me, and I've had crohn's for fourteen years now.

I truly feel that LDN is the only reason I am off pred. I started LDN mid-November of 08 while still taperring pred. I think I was somewhere in the ten to twenty mgs range. The two were probably working against one another for a short time. I have been completely off the pred since mid-January 09 and LDN is the only prescription I am taking. I currently have two completely formed bm's each day with no visible bleeding, which is tremendous for me. Go to your next appointment with tons of information on LDN including the trials with crohn's patients, side affects, etc. Remember also that you're not at your doctors mercy, they are ultimately working for you when it comes down to it. I felt trapped with no options other than what my gi said, which was a load of crap. I even got reamed out for taking omega 3, what an idiot, he was the one that gave me the packet of info that said omega 3 is good for crohn's, I should have gave it right back to him but felt like I was at his mercy and had to to as told. I'm glad that I have a local MD that's pro-LDN where I am, he does phone consults for out of towners as well. He's our new family physician:)

Good luck,

Miss

I guess I'm one of the "Others." I started it while in remission, against my wife's wishes since I was doing so well on Imuran and Entocort. The vivid dreaming and insomnia started within the first couple of weeks. At the end of my first month I was off the Imuran. Doing great and gaining weight. At the end of my second month, I tapered off the Entocort. At the end of my third month, I was doing just like the first Penn State study but then the diarrhea returned. Then I went to my opthmalogist to tend to cataracts that had been brewing due to my long term Prednisone use. He said he could not do the surgery because of the "mass" in my right eye. Lucky it was not Malenoma but only Scleritis of the Eye, another autoimune disease. The retina detached. I was 20/400, blind as a bat.
Who knows what caused all of this but now I'm back on the tradional meds, starting Humira yesterday.
Penn State had a second test that was a double blind study beyond 90 days. Does anyone have the results of that test? I'm not about to try it again but would urge anyone thinking of trying it to seek out those results.
Dave D

I don't think the second study is quite done yet. Don't expect to hear about those results for a while yet.

Miss

www.lowdosenaltrexone.org

 

If you go to www.lowdosenaltrexone.org and join the yahoo group there are thousands of members that have taken LDN for numerous years for many different disorders. My doctor just faxed my script to the compounding pharmacy, they called me for payment info, then mailed it to me. I submitted the receipts for reimbursement from my insurance but it's only around twenty-five bucks per month anyway even if you have to pay it out of pocket, that's about half of what my co-pay was for asacol which ended me up in the hospital for two weeks.

Miss

 

I took LDN for about 4 or 5 months before my disease got so bad from lack of treatment that I ended up in the hospital with three abscesses that needed to be surgically drained and have now become fistulas. I am convinced that the LDN not only did nothing but was in fact detrimental because it would wake me up at 3-4am with D. I would only go that one time a day usually but I would be in the bathroom for an hour sometimes. It just wasn’t worth it at all.

When I got into the hospital and told them that I was taking it, they didn’t seem happy about it and all the GIs I spoke to told me all the research they’d seen was inconclusive and not good enough to convince them that it helped more than placebo.

 I know the LDN website makes it sound great and I was so excited to be trying it, especially since I cannot take Remicade, I would advise anyone who’s taking it but not involved in a clinical trial to be very careful because you just don’t know what could happen; be sure to keep in close contact with your Dr. Also, based on the way LDN works, you should not be taking it at the same time as any of the meds that depress the immune system such as Remicade, Humira, etc…

Also, my signature is very old....

mickey138: Thanks for posting. Do you know where to find more information on the impact of Candida on LDN?
Also, do you know what fillers are good to use with LDN? Is methyl cellulose good (Avacil)?
cheers,
Ryan

Thanks for all the excellent information! Just wanted to add that the Specific Carbohydrate Diet is an excellent anti-candida diet (limiting or excluding honey initially, that is) and also helpful for many with Crohn's! It's also grain free, so therefore gluten free.

Hey Dave,

Sorry to hear that LDN was a bust for you. As far as my crohn's symptoms go, it's been gangbusters for me, I'm loving it. I do have a fissure/fistula, but that was there before I started LDN, so I'm having to treat it separately. As a matter of fact, once I get past this issue, I'm feeling like LDN is going to take me all the way.

Sadly, the fistula has caused a tremondous amount of diarrhea and so I've stagnated on being able to watch my crohn's symptoms improve. But as I said in previous posts, the intent of LDN is to CORRECT the immune system, not suppress it.

And conventional wisdom never gets bucked without resistance.

ExJohnson

Anyone have any updates on taking LDN after a while now?

I had an appointment with my doctor today and he told me to look up Naltrexone. He said if I fell comfortable with what I read, he will prescribe it to me.

Also, I have read if you are on other meds you will need to stop taking them. I am currently on 150 mg Imuran, 4 G/day of Pentasa & 9G/day of Entocort. Will I need to stop taking all of those if I decide to try LDN? or just the immuno suppressants?