LDN - Keep waiting?

[sarahcaitlin]

So, I started LDN last February-ish. I took it for about 3-4 months and started to feel pretty good. I didn't feel amazing, but I was starting to feel better.

After doing some research I read that for some people, the 4.5 dose is too much, and for someone my size (small) it might work even better at a 3mg or so dosage. So I switched to that. Progressively, I started to get sicker. It's just been so up and down since last January -- I'll feel great for a week, then awful for a week, then ok for a week, then terrible for a week.

Around July I ran out of LDN and got busy, and I was off of it for probably a month. In late August-ish, I got a new prescription back at the 4.5 mg dose. I've been on it pretty religiously for more than a month now.

Back around June-ish my doctor prescribed me Uceris because I was having a lot of dull aching pain and wanted something I could take along with the LDN. For a month or two after starting Uceris, I felt AMAZING.

Fast forward to now, almost the end of October, and I'm just not getting better. The Uceris doesn't seem to have the same effect. I'm slowly losing weight, now down UNDER 100 pounds, which I haven't been since high school. I have a lot of perianal problems, and a lot of intermittent pain right above my belly button, some vomitting, general feeling wiped and exhausted.

I went to my GI two weeks ago and my blood tests showed active inflammation (SED rate 68). I have a colonoscopy scheduled for Nov. 18, and we're going to decide on next steps from there. Anemia was pretty severe, so I'm going to get infusions soon.

I was on Humira from age 18-to last January, when I went off of it by my own choice and started LDN. I was never in a FULL remission on Humira, but I definitely wasn't having the weight issues and this pain and vomitting. My SED rate was still high then.

I am ALL about natural treatment. I don't want to go back on another biologic. But if things look terrible and I'm not getting better soon, I'm going to have to do something. I'm having trouble working full-time, taking care of my 3 year old, and generally doing anything that isn't sleeping.

I just don't know where to turn. In some respects, I've felt myself improving in little ways since I started back on the 4.5 mgs. A couple of perianal abscesses have started draining and aren't nearly as swollen as they were. Diarrhea -- except for this last week when I've gotten it out of nowhere -- has been pretty much non-existent. But this pain right around my belly button is awful -- it's dull, persistent, makes my mouth fill with saliva and often makes me throw up. I've had Crohn's since I was 10 (27 now), and I haven't had pain like this since I was a little kid.

Does anyone have any advice? Should I keep waiting on the LDN or give up? I can't take Remicade (allergic reaction), Humira never really did it for me, what are my other options?

Thank you all for your guidance, don't know what I would do without searching for every single one of my issues on this forum!

 

[JDTM]

Hi Sarah -- this may not help, as I don't have any experience with biologics, but aren't they not necessarily mutually exclusive? I could be mistaken, but perhaps there have been folks who have stayed on LDN while adding a biologic. Tagging Jmrogers4 to see if she can add anything to this.

As far as other biologic options, I know that there are some that are either out or on the horizon -- Cimzia comes to mind. Also, I'm not sure if you've ever gone the azathioprine/6-MP route, but that could also be an option as well. And as far as Humira is concerned, I know that developing antibodies can be a thing for some people who go off the treatment, but I'm not sure if that's true for everyone. Keep us posted.

 

[Jmrogers4]

Sarah,
Since you have been dealing with this for such a long time you know first and foremost you have to get the inflammation under control whether that is with Humira or something else. LDN seems to take a long time I would have to say it was 8-10 months before my son was in remission, yes he felt much better after 3-4 months, but labs were totally normal at 8 months.
I don't believe there has been any testing done with LDN and biologics more a case of not knowing which one is making the difference but personally sometimes I don't care as long as my son is feeling good. We are just getting to the end of a course of EEN from a flare that we believe was brought on by C-Diff. We added Pentasa at the same time and he is definitely feeling better whether it's from the Pentasa, EEN or just time for LDN to get everything back under control. I don't know that it matters much.
I don't know if I was much help but I do hope you get everything under control quickly

 

[Kev]

I am not familiar with Uceris. I would only expect slow, gradual progress commencing after 2 - 3 months of taking LDN at 4.5 mg. Taking combinations of drugs to fight this disease is understandable.... the fear... that it creates in us... been there, done that.

However, Crohns is not a 'killer' disease... mortality from it directly is pretty low, and it usually takes a long time to get to that stage. Some of the potential side effects from some of the treatments... well, they can be a different story. LDN is not an instant fix. It is hard to get a prescription for, and it can take months to demonstrate whether it is going to work or not, and while waiting for that to occur, it is common for folks to feel, even get worse. The reason to choose LDN is the safety. If you are combining it with a lot of other drugs to get 'instant' results... then this method is only as safe as the worst drug in the combo. There are other treatments out there that can/will stop Crohns. But combining them with LDN is faulty logic... because the minute they are in the mix, then taking LDN for its safety is a moot point. I totally get it... that people want to stop this damned disease by any means necessary.... but that doesn't mean you may not have to pay a price for it further down the road. I've had dealings with adverse reactions and the long term side effects of other drugs.... and it is no walk in the park. Just an FYI, OK?

 

[Queastor]

My advice is go low carb. Or more specifically eat lot's of fat and protein.

Cook chicken in oil (cook it on high heat so it'll carmalize properly and taste good) try not to burn yourself.

Eat hardened cheeses. Or just eat colby jack. That's pretty much all I eat cheese-wise.

"People with crohns disease tend to do better on diets high in fat and protein" -Dr Haas?

It's on page 7 or so of The Specific Carbohydrate diet. I've lost my copy so can't look up the exact quote but that was the gyst of it.

I'm.. absolutely anal about carbohydrates. Been without meds for 3 years on that alone, brings my symptoms down to bearable but still sucks. (started ldn literally 2 days ago) I know the relative protein/fat/carb concentrations of calories of basically every food. Low carb would be something you could try NOW though that could show fast results in terms of inflammation. You might have to run the chicken through a blender though since it sounds like your large bowel is messed up. >.>

I'd stay on the LDN regardless of whether or not you start something else.

You might also consider enema's of some sort to clear you out in order to try to take care of some of the inflammation fast, though I never did those myself so I don't know what medications to recommend, or how to do that. Or just how effective it is. It seems like something you could try that wouldn't be dangerous though

 

[Searchingforhealth]

Have you considered Medical Marajuana. check out the MMJ site on this forum. My 20 year old has a mmj card and is taking high quality Rick Simpson Oil and seeing relief in her IBD symptoms with no side effects. She tried LDN for a few weeks but ended up hospitalized for 10 days with a horrible c-dif infection. She will try LDN again but not until she gains back the 12 lbs she lost during that flare. The MMJ helps her appetite and pain symptoms and is supposed to help with inflamation. She is also considering a FMT in the future. There is a lot of good info on this procedure in the forum. Good luck with your colonoscopy