Goodbye Conventional, Hello Unconventional


3 Weeks ago, my treatment for Crohn’s made a change.  I took my last shot of Humira.    That was my final attempt at a conventional treatment.  Since 1988 I have been treating my Cronh’s with conventional medicine.   I have run the gambit and tried every catagory of medicine there is with no luck.  I have a mild case of Crohn’s and yet I still can’t get into remission.  My gluten-free diet has helped but I am not 100% there yet.  Humira was the last real medicine to try and that has now failed.  So, it is time to get off the road and look for another route.

After doing some research I found that Low Dose Naltrexone (LDN) was being used as a treatment but as far as IBD is concerned, it is still experimental.  There are a couple of small studies done and they all have looked promising.  For anyone that doesn’t know what LDN is, Naltrexone is a medicine usually used in high doeses of 50 mg.  It is used to block the feelings of opiates.  Mainly, the drug is used to help people get off drugs.   It blocks the feelings they get from the drugs so they can take something like heroin and not feel the effects from it.  LDN is the same drug only in a low dose form..4.5 mg.   LDN helps to boost the immune system and has been shown to help fight inflammation.  No one is sure just yet how it is fighting the inflammation which is why it hasn’t been approved yet.  More studies need to be done but a lot of doctors are now starting to get behind this drug.

One theory I have as to why this hasn’t been looked at widely yet is that it is an inexpensive drug.   You can get a 30 days supply for $15 (without insurance).  That means that no one is really making money off of it..so why would anyone reasearch it.  There is no money to be made.  A second theory which I just thought of yesterday is that a lot of the meds for IBD lower the immune system.  On the whole, the scientific community has been looking at lowering the immune system to treat IBD.  LDN raises and helps the immune system.  This is going against what the scientist have been researching…so this would prove everyone wrong.

When I first talked to my GI, I mentioned going off of Humira to start LDN.  He had never heard of LDN as a treatment and was hesitant.  Yet, he wanted to do research on it.  I gave him some time and about 3 weeks ago he told me that it was experimental but he would try it out.  He has no other patients on the med so this is new ground for both of us.  I am very happy that I have a GI that has an open mind and isn’t scared to try unconditional methods.

Yesterday, I got my script and was very happy.  I was nervous to take the pill as I don’t know how I am going to react to it.  The first couple of nights it is said it can cause insommnia and I did wake up at around 3:00 am and couldn’t fall back to sleep.  This is suppose to go away after the body gets used to the drug and in fact it is suppose to help you sleep.  I can’t wait until I get used to the drug.  Overall, there are no side effects which is why I wanted to use this med.  The worse that can happen is that it doesn’t work and I get a bad flare.

The only other major effect to this drug, is while I am on it, I can’t take opiate pain killers.  This worries me in case I ever have to have emergency surgery but for my colonoscopies, I can just stoip taking it for a couple of days.

I know a lot of people don’t know too much about LDN so I am going to try to write about my experiences as they happen.  So on day one, I am normal but tired.  No sleep will do that.   Day 2 will probably be the same.  Wish me luck as I want the insommnia to pass fast and hopefully by the weekend I can sleep again.

Stay tuned for my journey down this new road.  I am sure it will be a great adventure.

6 comments on “Goodbye Conventional, Hello Unconventional

  1. Congrats to you! Welcome to the wide world of LDN! I, for one, have been very pleased with the results. What dosage did you start with?

  2. ryanpstevens says:

    When I was regularly going to the Cleveland Clinic (over a year and a half ago) one of my doctors had mentioned he heard about somewhere (I can’t remember where, England maybe?) and how viagra was proposed as a treatment for Crohn’s. Viagra would be right along the lines of LDN.

  3. sdempster says:

    Props to both you and your GI for not only thinking outside the conventional box, but having the nads to take unconventional action. In my humble opinion, “unconventional” is the way forward for us Crohnies. Take care my good man, and I look forward to hearing how you get on with your new treatment approach :-)

  4. SCD Griddle says:

    Cool – I totally want to hear about your progress on LDN. Thanks for posting.
    Theresa ~ SCD Griddle

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