LDN experiences

[Tesscorm]

Hi everyone,

I'm hoping to get everyone's help here

Just a bit of background... My son is in the midst of transferring from a ped GI to an adult GI (mid October). Our ped GI has noted that, although my son is in clinical remission, MREs show that there continues to be inflammation. He was leaning towards adding methotrexate 'soon' but, as the transfer was imminent, preferred to allow the new GI to decide on future treatment. Currently, my son's only treatment is maintenance Enteral Nutrition - he did exclusive EN for six weeks to induce remission in May-July 2011 and has been on maintenance EN (1/2 dose) since then. While his inflammation has greatly reduced and symptoms are gone, there is still inflammation present at his TI.

So, my point... I will be asking his new GI to let him try LDN before methotrexate or another med. I am anticipating that his new GI will say the same as his last - not enough studies, etc., etc. :ymad: So, I'm asking those who have tried LDN to post their LDN story/experience here. Whether it worked or not, capsule or transdermal, how long you've used it, if successful - what reflected the success, ie tests, lessening of symptoms, anything else you think might be important, etc....

I'd like to put together a 'summary' to take to the GI with other material (I will leave out all names/pics, etc.). I realize the GI will consider it only anecdotal but, it's something...

Also, I think the thread will be useful to new and old members as an intro and reference to LDN, all in one location. There's a similar thread 'Kids on EN' in the Parents forum which I think has ended up being a very informative source for parents researching EN. I hoping this thread will end up providing as much info.

Thanks for your help everyone!!!

 

[Kev]

OK. Started 4.5 mg of LDN orally November of 2007. Only side effect ever experienced was vividly detailed dreams. Within weeks of starting LDN, my symptoms diminished to point where I'm able to hold down a physically demanding job (12 hours +/-, 5 days a week) and I have had multiple scopes/blood work showing that my disease is completely in check. My GI was so impressed with the dramatic turn around in my condition, another 5 patients were placed on LDN. All of us are doing so well that my GI wrote and presented a paper to local colleagues.

 

[67muzz]

Hi, am new to this forum, but felt the need to chime in about LDN, Having been on every terrible drug there is including 6mp, remi, and Methotrexate, I was enduring all the side effects but no relief from Crohns. This had been going on for 6yrs. After finding ldn myself through the internet, I ask my GI to script it for me, thank goodness he said yes. I have only been on 4.5mg caps for two weeks and Im stunned, down to 1bm a day(from over 10) and wow they are solid. No side effects except feeling the best i have felt in 6yrs. I ish I had found it sooner, side effects from the metho were terrible.
Good luck and hope your Doc sees how fantastic this drug can be.
67Muzz

 

[Livilou]

Hi Tesscorm! This is a great idea!!! I just posted on the parents forum about Liv's status.
I will keep everything crossed for you and your son, and of course pray, that the new GI will get on board with LDN....Good Luck!!
@Kev, so happy your scope results were great! So exciting to hear when docs are willing to share positive results with their colleagues! Kim

 

[LittleChloe]

Hey Tesscorm, I really hope you can get what you need. I've posted a lot about Chloe's success with LDN but I'll condense it here. She was diagnosed in October 2011 when she went into the hospital with suspected appendicitis. They found an abscess that was close to rupture. She was in the hospital 14 days on tpn and iv antibiotics. The recommended protocol was 6mp and pentasa. Her pedicatric GI was willing to let us try LDN first. He wasn't exactly familiar with it but when I showed him the studies he acknowledged that the results were very good. She's been on it for a year and it is the only drug she is currently taking. She's gained 15 pounds, goes to school every day, eats what she wants, feels good and has good bloodwork. Her last MRI noted improvements and a more normal appearance in the areas that had been diseased. This first year has had some ups and downs but those were largely due to a c diff infection and relapse. It didn't work overnight but it did work. As of today she has no crohns symptoms. She takes 4.5 mgs in a liquid form every night. One thing that may make your GI feel better about giving it a try is the fact that it does no harm. There were some mild sleep disturbances in the beginning but all of that is a distant memory. Very best wishes to you!