Has LDN helped you end a flare?

[crampygut]

Hi guys

I'm currently having a very bad flare, humira is no longer helping so I've decided to try LDN, just wondering if anyone is on it? Has it helped bring a flare under control? How long does it take to work?

I am desperate to get this current flare under control quickly because really don't have many more options to try any more.

Thanks guys

 

[D Bergy]

It can take six months to work. It might be better to have a stint on prednisone to calm things down before taking LDN. It really depends on how badly you are flared now.

LDN may stir things up a bit before your guts settle down again. Not sure if that is desirable if you are flared badly now.

Dan

 

[Clash]

Crampygut, we have an LDN forum(<--click here) that may give you more insight about LDN. I'm going to tag Jmrogers4, their son is taking LDN, if I'm not mistaken it took them about 12 weeks to reach full effects. Also ctrlz is utilizing LDN and may be able to give you answers to some of your questions.

Good Luck!

 

[Jmrogers4]

Yes my son has just finished his 8th month on LDN. The first month was pretty bad, he had a flare about 2 weeks after starting and we followed an SCD/Paleo diet for about 6 weeks when he started to flare. First week just chicken broth, boiled chicken, rice then added from there. He stayed Gluten free for about 6 months. I don't know if it was what helped get us through but we were able get through the flare without having to go on pred/see the GI.
He had been feeling pretty well for several months prior to starting LDN.
After about 4-5 weeks on LDN he started feeling better, not great but better and continued to improve from there. After about 8 weeks he felt really well and we stopped the SCD/Paleo diet but did not add gluten back in yet. At this point he was having normal BM's and no more pain. We had an odd day or two since then but seems to have always bounced right back.
We had scopes and blood tests about a month ago and scopes showed healthy tissue, not even scarring. His GI could not believe the results said it doesn't even look like he has Crohn's. At diagnosis he had active disease in Colon, TI, Esophagus Stomach and into small intestine where they could get to. His blood test were great his sed rate was 7 and CRP was .5
We started him on supplemental nutrition as he had not gained any weight for the past 3 years but had grown about 1.5" most of that while on LDN. He has been on that a month and gained 14 lbs. I have not measured him lately but I'm suspecting there has been more growth there as well as when he was standing next to his brother last night you could see a visible difference in height where we could not the last few months.
So do I believe LDN works. YES! but it does take a while. For lack of a better way to say it, it seems to start from scratch and rebuild. It took some time for him to get to the point he was at and it took time to heal. He still has Crohn's and we are still careful. He doesn't eat seeds, popcorn, those trigger foods that set him off in the past. But does eat everything else - raw carrots, pizza, hot wings.

 

[ctrl z]

You should get the flare under control before you start LDN because it takes a while to work, as others have stated.

Have you tried Flagyl?

 

[crampygut]

Thank you so much for your replies. I had a feeling that i would need to start a course of Pred before starting LDN. Can I start the two simultaneously though?

 

[Jmrogers4]

Recommended dosage of pred along with LDN is 10mg. I would suggest starting pred and as you taper start the LDN.

 

[crampygut]

Thanks Jmrogers4, I was hoping I could start the two together and by the time I came off Pred the LDN would have kicked in. Doesn't seem like that's an option though :/

 

[RhythM]

Last post on this thread was a while back but figured I'd provide some input...

I was on humira and a lot of prednisone when starting LDN in December, and had to get off both. Apparently, until at 10mg or less of Prednisone, the LDN can do nothing. This appeared to be the case for me. Once off predisone things got AWFUL for about a month... bloody bowel movements, EN, mouth sores, bloodshot eyes... you name it, I had it (and this is despite my current elemental diet) I suffered through it though because I had read this might happen on forums. After a month, things SLOWLY began to improve - I can't emphasize enough the SLOWLY part. I'm currently nearing two months on LDN after being off prednisone, and am feeling much better than before, with all symptoms mostly gone and bowel movements drastically improved. I'm going to stick with it to see how it continues, but I appear to be slowly getting better by the day. Just figured I'd point out you might go through an extrememly rough patch before you see any improvement, and the improvement is slowww. Then again, it also probably depends on the severity of your condition ( I have extremely severe Crohn's colitis :/ )

 

[Kev]

I echo your sentiment... the LDN process is extremely slow to get started... sort of like the rate of continental drift. Anyone who 'needs' fast results should go with some other option.