Low Dose Naltrexone (LDN)

[Frogjive]

Hello All,

Does anyone take LDN for Crohn's? If so, what symptoms (if any) did you experience once beginning? What dosage are you taking and do you feel like it is benefiting your condition?

Thanks.

 

[Jmrogers4]

There are quite a number here that take LDN for Crohn's. My son did for about 18 months and achieved remission on it for a little while before he contracted c-diff which sent him into a flare and we just didn't have the time to wait for LDN to work again. It takes quite a while for LDN to work. I saw in your other post that you are only taking 1.5mg? Was the plan to increase dosage over time? The recommended dosage is 4.5mg/day although I believe some take 3mg. My son was on 4.5mg. He did not have any overt symptoms. A headache the first couple of days. Many say they have extremely vivid dreams but that they have gone away, some complain of insomnia. Most seem to have experienced a worsening of symptoms before improving. The improvement is very slow, I think my son started feeling a little better after 8 weeks but it was really about 12 weeks before he was mostly symptom free and by 6 months he was doing fantastic. Scopes at 8 months showed healthy pink tissue in his bowels.
Tagging Kev, JDTM. Have a look around the low dose naltrexone section and you will find many stories of others journey with LDN. Best of luck to you. Keep us posted on how you are doing

 

[Frogjive]

Thank you for your response.
I will be increasing dosage .5mg each month for 3 months then I go back to my GP for blood work and prescriptions. I hope to be taking 4.5 mg by the end of the year but considering the side effects from 1.5 mg I am a bit frightened to take 4.5 mg.
I am waiting for procedures to go through insurance so my deductible will be met, then I can get entocort. Hopefully this will calm the inflammation.
Thanks again.

 

[JDTM]

Hi Frogjive!

I'm on both LDN and Pentasa, and that combination seems to be working for me thus far. I've been on 4.5mg from day one, and aside from a few vivid dreams in the beginning, there haven't been any other side effects to speak of. I know some people who have taken LDN have spoken about it getting worse before it gets better -- while that wasn't the case for me personally, I will say that the improvement process was slow. I started out when I was already doing OK (not 100%, but at least better than I had been doing), and the change was so gradual I hardly noticed it at all. Only when did I think back to how much worse I was months ago did I realize that LDN was helping me. I just had an MRI and although I seem to have a bit of scar tissue, there is currently no active inflammation present.

Hope this helps somehwat!!

 

[Kev]

I've documented my experiences with LDN from the very beginning, back in Nov 2007. I'm sick at the moment... but not from IBD. I seem to have contracted some form of gastro-enteritis (never heard of it before.. but it isn't IBD. Apparently I'm still in remission).. Anyway, if one can get past the 'worse before better'.. and LDN kicks in for you... then it might be a long time (I've been healthy as a horse up until this past May) before you have any significant symptoms. Can't promise you that, but that has been my experience.

 

[JDTM]

Kev -- glad to hear you're still "in remission," although I'm sure that's cold comfort if you're still feeling lousy at the moment. Keep us posted on your progress, for sure.

 

[Frogjive]

Thank you Jesse and Kev.
Any input is helpful to me at this point.
I hope you feel better soon Kev.

Jen