New to LDN -- questions!

[Nims22]

I just got a script for LDN. I was super excited to start it until I read that some people got a lot worse in the beginning and that you can't take anti diarrheals with it.

Can anyone tell me if this is accurate? The pharmacy said there shouldn't be any serious interaction between it and Imodium or Lomotil, but that it may render them ineffective.

I cannot take time off of work. I cannot afford to feel any sicker than I already am - temporary or not, and I definitely can't function at all without anti diarrhea medication. I will lose my job. I am scared now. I want to be better and I now feel really stuck and freaked out.

If anyone who uses it/ used it can give me any info, I'd really appreciate it.

The dose is 4.5mg. I don't physically have it yet so I'm not sure I can cut it down to try less first either. I am small - 5'4 107lbs.

Right now my scopes show gastritis, duodenitis and mild/ moderate inflammation in my recto sigmoid colon. I am very symptom heavy in terms of diarrhea and occasional bleeding/ mucus. I have arthritis from the crohns and keep breaking out in hives (which I am told is autoimmune). I have intermittent gastroparesis. Always tired... I rarely have a day that I really feel ok. But am somehow functioning with zofran and Lomotil. Without it, I can barely even make it to work or sit through a 45 minute session with a patient (I am a therapist) without having to run to the bathroom several times - which is extremely disruptive and counterproductive to my work.


So again - any info, tips, personal experiences -- how to deal with diarrhea in the meantime especially is much appreciated!

 

[momofzach]

I have been on LDN for around a year and a half. I can remember in the first couple of weeks flaring mildly, but I got the good advice to try to deal with it, because it does get better. It didn't take long to feel better, and it's been over 2 years now since any ER visits, which is unbelievable to me! I recently found out that I have some mild chronic inflammation and am going to be starting Azathioprine after my bloodwork comes back, but I feel better than I ever have and don't plan to stop the LDN. Try to stick with it, if you can, for many of us it works wonders! Best of luck!

 

[Jmrogers4]

My son took lomotil with LDN with no issues and he did experience a flare at the beginning. Are you on any other medication? We were told to stay on azathioprine for the first 3 months (we didn't) but if you are on something that is keeping it fairly under control I wouldn't necessarily rock the boat.

 

[Frogjive]

I started with 1.5 mg this past Saturday and it has made things worse. I am in a flare with mild to medium cramps and I woke up the next morning with flu-like symptoms (coincidence, maybe?) The flu-like symptoms are almost gone but I am still flaring. I am sticking with it, sometimes things will get worse before they will get better. I am trying to eat mostly soups/broth and smoothies to help with the flare. I wish you luck.

 

[Nims22]

Thanks -- right now I'm taking Pentasa and I take elavil daily (have to update my signature -- not taking all of that anymore). Lomotil and zofran as needed. I really want to do this!!!! Starting something new is always scary. I suppose it's worth it to stick it out.

Thank you so much for your replies! Wishing the best for all of you as well.

 

[Kev]

I never had any luck with any anti-diarrhea meds... they simply didn't work for me at all. So I can't offer any opinion or advice with using them or not while on LDN. If LDN did work for you... eventually... you should end up symptom free with it as your only drug.

 

[Nims22]

That's what I'm hoping for... Wanted to make sure in the meantime, when I have to work that I can control it somehow, because I know the benefits are slow to come. It should be arriving tomorrow and I'm starting it Friday night.