I've started LDN and I'm requesting input.

[Rheumandroid]

If you're taking LDN, please give me your input.

I'm 30~ year old male. My Crohn's is moderately bad. I do not have [visable] blood in my stool, but it can be watery and trips can be 3-4+ per day. My guts will often makes noises after I've eaten, for just a little bit. It's rather embarrassing. I haven't seen a doctor in over 2 years because everything they always do for me, ends up making both Crohns and my overall health much, much, incredibly much worse.

I obtained LDN. I've started myself right away on 4.5mg. For the first 2-3 days, I noticed a small improvement and zero side effects. It's been almost 3 weeks now, and every day since, I've been extremely fatigued (Crohns always made me tired, but this is even worse) and my appetite is often not present. Overall, my Crohns feels only slightly better with no real improvement.

I understand it's been a very short period of time. I'm not saying LDN isn't going to work - I have great hopes and it's odd for the first 2-3 days it really seemed good (I'm sure it was, and I wasn't being mental about it).

Is it common to feel very fatigued and have little appetite while taking LDN? I used to be able to eat a footlong from Subway with ease (then some chips too maybe) but now I eat a 6 inch and I feel stuffed, and my gut will rumble a little.

I think it's "getting worse before it gets better". Just the appetite change and fatigue is making me worried. Was hoping to hear if anyone else went through this. Maybe the standard 4.5mg dose is too much for me? Or maybe I need to be patient? I'm able to get thru my workday...

What do you think, friends?

 

[Kev]

My thoughts... way too early to expect to see improvement. First few days... probably endorphins from starting something new. My 'gut' instinct is that the 'worse better gets better' is actually the first real sign it is going to work. The odds are on your side. Your diet is another matter... not putting down Subway... but... processed meats aren't the best choice of protein... and all those veggies are just asking for digestive grief.. and the bread is carbs... good food for the bad bug in your digestive tract. Ever considered going to see a nutritionist experienced in IBD?

 

[Trevor]

Not to repeat what Kev is saying but it can absolutely get way worse before it gets better and I think it's a very good sign that it did anything at all.

I had to stop the first time I tried LDN and do another round of Pred because it got so bad. I'm two month into my second kick at the can and I've seen near impossible improvement in such a short amount of time. Two months ago walking from my car to my door was a serious effort. Now I'm about to start working out for the first time in a couple of years.

Stick with it!

Diet is hugely important, though. I'm by no means perfect but I do a pretty good job of staying gluten-free and eating Paleo 90% of the time.

The LDN will help a lot but your body needs the raw materials to heal as well.

 

[crampygut]

I've just started LDN also but what I've done is get the compounding pharmacy to make my first batch of LDN in 1.5mg capsules. I've started taking 1.5mg per night and plan to up it every 5days until I get to 4.5mg per night. I've read that MS and other sufferers do this to help ease them into the drug and avoid potential side effects. I'm hoping this approach will help me ease into the full dose of LDN without causing me to much grief. Every year that passes it seams that drugs I once tolerated well I can no longer tolerate I've become extremely sensative to drugs and get side effects easily.

Maybe this approach can help you avoid the fatigue you're describing.

 

[Kev]

Just for clarification... I'm not suggesting that starting off at 1.5mg and ramping up to 4.5mg won't work... I don't know, and I'm not sure even the so called "experts" know.. more like an educated guess on their parts (my ASSumption) what the minimum trigger dosage is to achieve the desired 'rebound' effect. I do know, personally, and from the studies.. that 4.5mg does work. However, if you are counting down the days waiting for results... I would suggest that you only timeline from when you reach a 4.5 mg dose.

I know how sensitive a body can get. At my worst, the lactose in a vitamin would set me off. And, when I started on AZA, I was doing OK on the prelim doses, but ramping up to an effective dose put me in the hospital. I came off it, the pain stopped within 48 hours. My GI had me wait a while, then try 1 prelim dose again, just for confirmation. I tolerated it extremely well BEFORE the ramp up ... but that 1 little dose had me in agony.
So, avoiding a situation like that.. if you have a history.. that is a sensible precaution. I just wanted to point out... since it can take a long time for LDN to demonstrate that it's going to work... and dealing/coping with flare-ups while waiting for it.. many folks have a hard time staying the course.. AND that can result in folks giving up. And the stakes are too high. If one can manage to get through that rough start-up patch, and LDN is effective... then you've got a safe, effective long term treatment for this damned IBD.

 

[crampygut]

I am fairly new to LDN and I'm forever in debt to Kev for all his advice and assistance with LDN and I would considerate it very wise to listen to his suggestions as he has had a long time experience with LDN and helping people on this site with LDN. And I agree totally that we all must persevere for at least a few months on 4.5mg before judging ldn's effectiveness

 

[Rheumandroid]

I sincerely appreciate the advice. I've only been on LDN not even a month yet, so I'm hanging in there. However, I believe this extreme fatigue I'm having is a side effect of LDN for myself, personally. It started up exactly when I started the LDN, or a day or two after. I might ask my doctor to check my blood, iron levels, etc. to make sure it's not something else, but I've had a fairly recent check and I was fine.

I slept for 8 hours last night, and woke up completely exhausted, snoozed for 1.5 hours and went into work late. I'm now at work and so tired, I want to go back to bed incredibly bad. I might leave for the day.

Anyone else who has taken LDN experienced extreme fatigue, or should I consider the fatigue showing up after I started taking LDN as dumb luck and there's another issue going on?

edit: Been at work 4.5 hours. I could pass out right now easily. Drinking caffeine to make it thru the day.

edit: My right ankle and knee are swelling, making it painful to walk.

 

[Trevor]

Not a doctor but all my research points to LDN boosting your weak immune system and helping your body deal with latent infections of various types.

Hence why it gets worse before it gets better.

I've had my ankle swell and get hot before (lots of scar tissue from sprains in that ankle) prior to LDN but not while on it. No idea if its the same mechanism. Helpful, aren't I?

The fatigue is hard to say for me becaus the crohn's by itself made me very fatigued. My energy has gotten better as of late but short of putting me in a coma the LDN couldn't very well have made it worse.

Sorry I can't be of more help. Best of luck!

 

[crampygut]

I've been getting the same problem. Since starting LDN I also have had daily increased fatigue much worse than before LDN but I'm hoping that its just part of the healing process and that LDN is actually working for me. Hoping its not just a side effect and will go away eventually

 

[Trevor]

Should also have said before that any sort of immune function is VERY metabolically taxing and it makes perfect sense that you'd be fatigued while your immune system attempts to deal with the issue(s) at hand.

 

[crampygut]

Trevor Did you get worse before you got better?

 

[Wendy M]

This is my first post but have been following the forum for a number of months. Thanks to everyone for all the information. I too started at the 1.5 dose and increased to 3 and then 4.5. Each time I felt worse for a bit before improvement. Even when I went from 3- 1.5 capsules to 1- 4.5 capsule I felt worse first. I have now been on the full dose for 5 months, as Kev suggested I didn't start counting the time until I was at the full dose. I have been improving but as everyone says it is slow. However after 20+ years with UC I am thrilled to be moving in the right direction even if it is slow. I think we are all just anxious to feel better and to know that the LDN is working. Hang in there.

 

[Trevor]

@crampygut

Very much worse before I started getting better. To the point where I had to fall back and start another round of Pred before trying LDN again.

I'm at about 9 weeks now and things are moving along amazingly this time.

 

[crampygut]

Welcome Wendy, good to hear that you're persisting on LDN, if it helps us as much as its helped others then its definitely worth the wait.

Trevor I'm glad second time round LDN is helping. I probably would have given LDN up If I had flared, you've shown me that in the event ldn doesn't help me the first time i should give it second try. I'm hoping it will help the first time though. It's just this darn fatigue and broken sleep that's really bugging me and I'm hoping this side effect will stop soon.