LDN/Stelara

Ask your GI why she refuses to prescribe LDN. It is best to get a 2nd opinion from another medical professional. Who knows, maybe they will agree. Hopefully you already understand that Stelara is another immunosuppressant just like with Remicade and Humira which did not work for you. Show your GI the latest FDA warning about immunosuppressants and tell her that you are concerned.

On the other hand many people have had success with transdermal LDN with very few side effects. A search for threads on HealingWell for LDN can provide ample information. IMO I would rather try something with fewer side effects to see if it is effective before trying another immunosuppressant.

Post Edited (BabeintheWoods) : 6/27/2011 6:40:51 AM (GMT-6)

I'm in the same spot that you are... I've failed every other drug on the market. And... I just attempted to enroll in a GSK clinical trial for a new oral medication. It's a new mechanism and showed good responses on the Phase 2. Unfortunately, I have a couple of the exclusion criteria, so despite the fact that I meet every Crohn's requirement (had 9 vials of blood for labs, an EKG, colonoscopy, ... all to be told one day before my receiving my dose med, that I cannot participate. Not handling that too well, but that's for another post. This trial does have a 2 year open label (no placebo), so it might be another option for you to look into.

So now that I've lost the trial, I have to choose between Stelara (hoping to get it covered) and LDN. My GI wants me to try LDN first. Mostly because it's so cheap that even if insurance doesn't want to cover it, it's something I can handle.

There are study results posted for LDN on the Penn State website (http://live.psu.edu/story/53494) (http://live.psu.edu/story/53494) Maybe if you printed this out for your GI she might be more interested in helping you to try it.

The LDN study shows that it takes about 12 weeks to see a response. Stelara seems to show a response more quickly (http://www.drugwatch.com/news/2011/05/09/crohns-disease-treatable-stelara-psoriasis-medication/)

I'd love to keep sharing stories as it seems we are really at the same place right now. I am leaning toward Stelara. I suppose mostly because I have a lot of chronic pain and I am a bit scared to go without pain management for 3 months to see if the LDN works. but, if insurance won't cover the Stelara... then it's decided for me.

My daughter was a little bloated in the first couple of weeks after starting LDN, but it settled down. We suspect the bloating was causing by the changes LDN was making in her system. She also had some vivid dreams and was very tired...needing a nap after coming home from work. Her appetite was also lower. After the first two weeks, she didn't notice any side effects at all.