Started LDN for Crohn's, now flaring badly with unusual symptoms?

[RhythM]

Hi everyone! I'm new to this forum, though I've been perusing it for years now. I was diagnosed with severe Crohn's colitis in 2010, and have been tried a lot of diets/medications (Mesalamine, Azathioprine/6mp, Biologics, Marijuana, SCD, Elemental Diet) with limited success. The only thing that seems to work is Prednisone, but obviously that's not a long-term solution :yrolleyes:

I recently wanted to try LDN before resorting to yet another one of my GI's dangerous combination concoctions. I began taking 4.5mg of LDN a night on December 9th, while on 30mg of prednisone. I've tapered down 10mg every two weeks so that I am currently only on 10mg of prednisone.

At first I noticed very little besides the typical vivid dreams / mild insomnia, but over time I began developing odd symptoms. Currently I have a large, painful lump of erythema nodosum on my left shin/ankle area, which makes it difficult to walk on that leg. Smaller bumps are also speckled randomly in other areas on my legs but are not as painful. I also have some pretty intense arthritis pains going on in many areas: spine, ankles, toes, hips, left wrist. On top of that I have mouth sores, which I have kept mostly in control with chlorhexidine gluconate (Peridex).

The crazy part is I have never seen most of these symptoms from a Crohn's flare before. I've gotten the sores, but never the EN or arthritis. Also, my bowel movements have greatly improved, occurring only 4-5 times a day, often being formed, and containing only small traces of blood. It's almost as if I've traded one problem for a slew of others :ybatty:

I really don't know what to make of this... while I think the LDN has thus far improved my GI symptoms, all the other symptoms are no fun. I read somewhere that LDN initially makes things worse before they get better, and so I've been sticking to 4.5mg LDN a night in hopes that conditions will improve... but it seems they just keep getting more severe. For anyone who's experienced the "worse before better" effect, how long before they get better? Should I perhaps decrease my nightly dose of LDN for a while?

Any suggestions would be helpful... I really want LDN to work for me as I am running low on options and I hate the dangerous biologics/suppressant combo my GI wants to stick me on. Looking forward to seeing your responses and hopefully things get better soon!!!

 

[lizbeth]

Hello and a very warm welcome to the crohns forum

I was sorry to read that you've not had much relief from the meds so far I'm sure it must be very disappointing and disheartening, but hang in there. I'm also sorry I can't answer your query about LDN as I have no experience of that treatment but I'm sure there will be someone along soon that will be able to give you the help you need. I really just wanted to welcome you and say I'm glad you joined us.

 

[Jmrogers4]

Hi RythM,
I'm sure others will be along shortly but I can say for my son at least the first 2 months were the worst, then just kept improving from there until all labs were normal and even scopes done at 8 months on LDN came back showing only pink healthy tissue.
Unfortunately we have recently had to quit taking it as he got C-diff over the summer which pushed him into a flare and long and short of it lots of inflammation in small intestine and he is 14 1/2 and struggling with growth and weight gain we just did not have the luxury of more time to wait to see if we can get things back under control although we did try a short burst of prednisone and 8 weeks of EEN but inflammation markers kept climbing.
His GI and I both agree that it is entirely possible we will go back to LDN as it really did work who knows maybe with a child and growth and development and hormones it just wasn't enough for now.

 

[Kev]

Hi there

My thoughts are that any improvement is probably residual from the pred, and not from the LDN. I would expect that the whole LDN initiation wouldn't even commence until you dropped down to 10mg of pred. And from that point, you'd probably be looking at months before things improved (due to LDN). I would anticipate things getting worse before you get better.... AND.. if like me... there will probably be some pred withdrawal of rather intense dimensions.. I'm not deliberately trying to scare you, but if you run into LDN not going the way you anticipated... then this is what I would suspect is going on. I believe in the long run LDN will work for most people... if all other conditions are right.

 

[RhythM]

First off - thanks to all of you for the quick responses!!!

@Lizbeth:
Hello there! Glad to finally be a part of this forum as well... perhaps I can contribute something back to it after having taking so much information from it over the past few years

@Jacqui:
I had read about your son's progress somewhere on another forum post. I'm sorry to hear the LDN isn't still working, though the fact that it did do something initially gives me hope! As for clostridium difficile - ooohhh boy, can I relate. I first developed a pretty nasty recurring case of that a little over two years ago. It smelled just awful whenever I went to the restroom, and the stomach pain was pretty intense. I ended up in the hospital because of it. They put me on metronidazole, which worked initially... but the C-diff was back in a couple months. So I got another course of metronidazole. Worked again for a month, but again, the C-diff came back. Then they gave me vancomycin. Knocked it out for another month, but it still came back! That's when I took things into my own hands - I'm not sure if you're familiar with the fecal matter transplant procedure, but there are lots of posts on this very forum about it and it is highly effective against C-diff. The US is beginning to test the procedure in clinical trials, but adoption is slow due to lack of FDA approval :yrolleyes:. I basically just did the procedure myself, using enemas and a family member as a donor. It was pretty gross, but it knocked the C-diff right out. On top of that, I used (and continue to use) Joy of the Mountains Wild Oil of Oregano, about 10 drops 3 times daily. Oil of oregano is a safe and powerful anti-bacterial, anti-fungal, etc., and is effective against C-Diff. I haven't had C-diff again since doing the procedure and taking the oil, and it's been over a year and a half! While I wouldn't necessarily recommend self-administering FMT on your son, you could certainly ask the doctor about it if he ever has C-diff problems again. The oregano oil should would be safe for him though, so that I would recommend. Regardless, hope your son is able to get to a better state soon! I thought getting Crohn's at 23 sucked, but I couldn't imagine having to deal with it at such a young age!!!

@Kev:
Yeah, that's what I was thinking as well :\ The prednisone withdrawals definitely have me a little concerned, and I should be hitting them soon Luckily I have some tricks I've learned to help get over them. Still, it seems I'll have to "grin and bear it" for a while before I see improvement... thus far I've been able to manage, so I think I can suffer through a little more if it means better quality of life in the long-run! I decided to try the supplement DLPA as well, since I've read on various sites it enhances the effectiveness of LDN. Hopefully that can cut down the waiting time a bit, we'll see. By the way Kev, your posts are what convinced me to finally take the LDN plunge in the first place! I've read many of your posts... your success story is inspiring, and most of your posts are very helpful on what to expect with this treatment. Really appreciate all the information you've provided on these forums!!!

Thanks again guys!

-Kevin-

 

[Jmrogers4]

We actually did talk about FMT, Jack's GI has not done it but another one of the GI's in the practice has done it a couple of times. So far so good and it has not reared its ugly head again. Hopefully we won't ever have to go there but I hear you on the smell, had to put a face mask on so I could get a sample without losing my cookies and I have taken plenty of sample from him

 

[Kev]

Aw, c'mon.... is somebody 'shitting' me? Not yet another person named kevin with this disease... how many is that now... 3, 4, 5??? This is going to get damned confusing... I'm NOT paying for a name change... not at my age.

 

[RhythM]

@Jacqui:
Yeah, the smell is unbelievably bad... glad to hear he's shaken the C-diff though, hope it stays away so neither of you have to smell that noxious scent again!

@Kev:
Haha yeah, it's pretty ridiculous. I have a fellow coworker who also shares the same name... and the same disease! :ybatty: I think it's time to change the meaning of the name to "Awesome dude... with less than awesome bowels."

STATUS UPDATE: I think the swelling in my left ankle has gone down a bit! That, or I've become a pro at walking on my left toes. Either way, I can currently get around a lot easier... so that's something!