LDN - Another option for me?

No but I am trying to look into it too. I have an appointment with my rheumy on Monday and was going to bring it up. I just found out I also have ankylosing spondylitis along with UC. I will probably need a biologic, but had thought of LDN as a possibility.

If my memory is even close to accurate, I'm thinking there was some study at Penn State on LDN. Then, some company bought out their research to the drug?

-It's been a while since I've looked into all of it. That's why I was asking for any recent data.

hey t man - howz mrs t man doing ? are you guys making any progress towards trying to figure her "thing" out ?

I've not been on the forums for a while but wanted to post an update, specifically about LDN (low-dose naltrexone).

I've had ulcerative colitis since 1999. I was mostly untreated up until 2006 at which time we began using mesalamine drugs which worked so well that I was on Prednisone about 9 months of the year - so they were not working well at all. During the worst flare-ups even 40mg of Prednisone would not stop the bleeding, though it would reduce it.

I had another colonoscopy in 2011 prior to starting LDN and it showed discontinuous ulcerative colitis. I mention this because when he told me, my gastroenterologist said he had never seen this before and it was not supposed to happen. (I had 2 areas of inflammation separated by healthy colon.) Honestly, he sounded very worried as the colitis was worse than my last colonoscopy. I had been researching changing my medications to Imuran at the time and the NIH suddenly changed their warnings to include no pregnancies or nursing - previously my doctor told me it was the preferred drug in the immune-suppresant class of drugs for patients in those situations. I got spooked and looked for alternatives.

I came to this forum and was intrigued by the information about LDN. Luckily, I also knew someone locally that was using it successfully. So I decided to try it, knowing I could always add or switch to Imuran if it didn't work. I waited until that colonoscopy in 2011 so that we could document the results with my colonoscopies. My gastroenterologist had not heard of the alternative therapy and did not expect it to do much. (He was not the prescribing doctor but I kept him informed on how I was progressing.) The next 2 years surprised him greatly and he is now very intrigued my results. On LDN (3mg nightly), I experienced complete remission in 48 hours. I had no abdominal pain during my 2.5 years of use of LDN. My next colonoscopy in 2013 showed almost no ulcerative colitis still present. However, the drug has become considerably less effective for me - rectal bleeding has returned more frequently - and in fact I experienced my usual September flare a week after that startling good colonoscopy.

So I've now moved onto Imuran. Why? Because I developed uveitis right after I started LDN and we have had trouble controlling it. I do NOT think LDN caused the uveitis. Looking at the literature, they claim no benefit for uveitis from LDN - and they are correct. Uveitis is a complication of ulcerative colitis - it has taken 2 years for me to completely admit this. Why? Because the LDN had controlled my colitis so well that my gastroenterologist considered me "under control" during all of my struggles with uveitis. However, since going off of LDN and on Imuran at 100mg daily, my back pain has returned as has my abdominal pain and some rectal bleeding during fall.

My ophthalmologist has increased my Imuran dosage to 150mg a day to control my uveitis, and that dosage has stopped any colitis bleeding this September. I think I'm finally where I need to be on Imuran - which is where I thought I needed to be in the first months on Imuran due to the bleeding that was barely controlled by 5mg of Prednisone throughout fall last year.

I would recommend LDN to anyone wanting to avoid the immune-suppressant class of drugs (Imuran or Prednisone even). My experience with it was fantastic. Unfortunately, I think I was already uncontrolled for too long to avoid uveitis. I still require the eye drop version of Prednisone periodically - but my dosages are much lower now and I think my ophthalmologist will be content where we are. (Prolong use of Prednisolone eye drops can lead to cataracts and other eye complications which is why it was necessary to find an immune-suppressant drug for me.)

Good luck to everyone here on the forum. I'll be around now as we've discovered and proved to myself and my doctors that my diet does play a significant role in both colitis and uveitis. I'll be sharing my experiences so that others won't be led down the false path of "diet doesn't contribute to colitis" or uveitis - I can definitely call bull-crap on that statement.

Sincerely,
Eden, aka, OUgizmoASK

150mg Imuran, 10mg Singulair, Allegra-D 24-hr, allergy shots
Ulcerative colitis: no bay leaves, broccoli, cantaloupe, cauliflower, cucumber, or horseradish
Uveitis: no alcohol or caffeine
Minimize as necessary: dairy, wheat, corn, rice, carbonated beverages

The research seems to have stalled.

I do know a woman who uses LDN for her MS. She told me she was not 100% sure it was helping, because she takes other drugs, but had not side effects, and thought it might be helping some. It is cheap too, so seems reasonable to try.

I got some from my GI, but never filled the script because I was fussing with enemas. Then later I started getting better, so left well enough alone.

I've been on for for about 2 years I think. No flare. No issues. And I've been able to introduce weheat back into my diet without a lot of issues with the meds (Still don't understand why you have to take wheat out).

Last scope showed zero inflammation. It worked better for me than Imuran did.

I still think there needs to be more research on it. I don't think it actually helps almost every illness out there. I've heard a few saying it can be used for HIV. ...Uh, nope. Again, we need more research.

Hey what dr will prescribe this drug? I know I brought it up to my gi before and he wasn't keen on prescribing it.