LDN side effects!!

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Joined
Apr 13, 2012
Messages
122
Location
Long Island NY
So I started Liv on transdermal LDN on Monday night...all went well the first night, no weird dreams or sleep disturbances. Last night, I gave her the same dose, 2.25mg, I planned on only giving her half the prescribed dose for about a week and than slowly increase to 4.5mg. I wanted to be sure she didn't have any reactions to it. Well, she slept well last night, no dreams, however, she woke up this a.m. extremely dizzy and having severe nausea. I know the drug crosses the blood-brain barrier, so dizziness is a listed side effect. This stinks, she cannot afford to miss any more school and she is freaking out about missing a group project and a physics exam. I was hoping she wouldn't have any problems with this....she is refusing to take her morning meds b/c she is afraid she will toss them....ARGHHHH!!! Not a good start today!!! Kim
 
Oh dear, that's not good. What a shame it wasn't straightforward! Hope it is just a one off and things settle down!
 
Thanks Angie and Kim...Liv was able to make it to school after resting for 3 hours. She wasn't 100%,but said she was feeling a little better. The nausea and dizziness had passed, but she said she felt so overwhelmingly tired, extreme fatigue. She could barely keep her eyes open sitting at the kitchen table, almost like she was drugged. Fatigue has been an issue this past month, she is slightly anemic, but I am worried about her thyroid hormone replacement. Labs from 5 weeks ago were normal, but I wonder if any of the supplements I've been giving her are messing with the synthroid. I was told the LDN should not effect it. Or, it could just be that the CD is starting to rear it's ugly head...oh
God, here we go. Kim
 
Kim, as naltrexone is the next step for old Violet if the current regime fails, I'm very curious and interested in any and all on here who are using it...the other Kim's Caitlyn is on the oral form, and I'm wondering why you guys are using the transdermal form?
Did her doc say that was preferable and for what reason??
Could the side effects you mention be due to the dosage form?

thanks in advance...:heart:
 
Hi imaboveitall! I spoke with Dr. Skip at Skip's Pharmacy, and he thought Liv may do
better with the transdermal form as her serological markers (Promethius) and stool markers
showed severe gut inflammation. At some point they will switch her to the oral version, but
thought that now she may have trouble absorbing. Skip told me that there usually are less
side effects with TD form. I only gave Liv half the prescribed dose, but the MD who ordered it got back to me today and told me to cut the dose even more to 1.5mg for 2 weeks and than to go slowly up to 3mg for now. I think I'm going to hold it for tonite and restart tomorrow. Liv is perfectly fine now...Skip says she shouldn't notice side effects in the morning as the drug wears off after 2-3 hours of absorbing it. Maybe it was just a one-time deal. Could be the supplements I've been adding too, or maybe her thyroid levels are off. Put a call out to endocrinologist as well. Will keep you posted as we go!
Kim
 
Wow, thanks :thumleft:
I had no idea, makes sense though as to maximize absorption...I'll be discussing the TD form w/The Saint then when we get to that which may be soon...interesting. Didn't even know it came that way...
 
I'm wondering if what Liv is experiencing is not, per se, a 'side' effect of LDN, but rather LDN starting to do its thing. I don't understand the mechanics of how LDN works, I'm not 100% convinced that the 'experts' thoroughly understand how it works. If it temporarily 'resets' the immune system to fight rather than assist Crohns; then maybe for a few hours after taking it; her body is starting to fight the disease. That is total speculation on my part, and we may have some folks on here who are authorities on how Naltrexone does its thing who will dispute/disprove my speculation. But if my theory holds up, it would fit with what I initially went thru when I started on Naltrexone, and it seems that it would fit with what Liv is experiencing. Think about it. She wears a patch, it gives her immune system a 4- 5 hour window of opportunity to start a knock down, drag out fight with Crohns (making her feel absolutely miserable, like she is sick), then the Naltrexone wears off, the immune system leaves the Crohns alone, and she is then feeling as tho she isn't sick (tho the Crohns is still there). Yeah, I know, it is quite a stretch of the imagination. And the downside is... if I'm right, then Liv will likely feel much worse before she begins to feel better. It is like slowly fighting off a very serious illness in 1/4 day segments spread out over a long time till the disease is put into stasis.

Unfortunately, one of the risks with going with LDN is that you have to be prepared to take that gamble, give it 12 - 14 weeks to work, and steal yourself to the possibility Liv will worsen before things turn around... with no guarrantee that LDN will work for her. I wouldn't want to be in those shoes... watching a child of mine get worse for 3 months. The payoff is if it does work. But it is hard to take that gamble when your child is the stakes.
 
Hi Kev! I was hoping to hear from you, I have followed your posts over the past month and I am so happy that LDN has turned your life around! I know this is a gamble, but I feel like we should at least try the LDN...I understand that it may not work for her, but before starting with some of the stronger drugs again, we will give it a go. I will be watching her like a hawk..after dealing with a cancer diagnosis ,we are praying this will help her.
Did you have the same kind of symptoms when you first started? I gave her the dose at 10pm, right before she dozed off, but maybe I should give it earlier? Liv has missed so much school, and with prep for college admissions and testing coming up, this is a tough time for a high school junior to miss-bad timing on my part! I have been anxious for her to start the med b/c she has been without Crohn's meds since her cancer diagnosis back in September. We are lowering her dose for 2 weeks and than slowly increasing to a max of 3mg. I'm hoping that dose is effective for her since the MD wanted her at 4.5mg. I will continue to be cautiously optimistic and hopeful for now. Thankfully, aside from fatigue and slight anemia, Liv has been asymptomatic. I lowered her dose of steroid last week to 6mg of Entocort so the LDN has the best chance to work...we will hopefully drop that to 3mg in a few weeks if she stays stable and tolerates the LDN. BTW, your theory makes perfect sense to me! Just stinks that things have to get worse before they get better.
Thanks again Kev!!! Kim
 
I have never heard of any long term side effects from LDN, so any that are present now should pass in a couple of weeks.

LDN can cause a healing crisis for lack of a better term. Pathogens or cancer that has not previously been taken care of by the immune system, may be getting hit now.

I follow a Lyme Forum and have dealt with the disease in my family. LDN can cause a lot of trouble while the Lyme bacteria is being killed in larger numbers than before. Lyme is toxic when killed, as is cancer and a some other pathogens.

The point being that it is not all that unusual for a person to feel worse before they feel better. The flu is worst when the virus is being killed by the immune system.

I have no idea if this is the cause in your case, but it is a possibility. In any case, it should pass with time either way.

I hope she improves soon.

Dan
 
A couple of conflicting statements as to whether LDN should be delivered transdermally or not...

For LDN to work, the full LDN dose must be delivered to the body in one go. Transdermal delivery methods by nature result in slow continuous delivery of a drug. This will result in continuous opiate receptor blockade - quite the opposite of the purpose of LDN which is to deliver a very short term blockade in order to create the beneficial rebound effect.

http://www.ldnscience.org/questions-and-answers/low-dose-naltrexone-ldn


Reports have been received from patients that their pharmacies have been supplying a slow-release form of naltrexone. Pharmacies should be instructed NOT to provide LDN in an "SR" or slow-release or timed-release form. Unless the low dose of naltrexone is in an unaltered form, which permits it to reach a prompt "spike" in the blood stream, its therapeutic effects may be inhibited.

http://www.lowdosenaltrexone.org/

...I have no experience with LDN but wondered if those of you that do have any thoughts on these statements.

Dusty. xxx
 
OK, couple of things. Unless there is a clear, rational argument put forward by a doctor to go with a lower dose, I suggest that the 4.5 mg dosages used in the original studies are the defacto standard. Remember, 4.5 mg is 1/11th of an off the shelf Naltrexone pill (50 mg), and, IF the patient falls within the normal bell curve of adult sizes (despite the age), there really shouldn't be cause for concern. Troubled sleep... maybe (I never had that), but, is some troubled sleep worth risking what could be a life saving medication. It is NOT as if this is a life threatening side effect... Rather it is more of an inconvience.
If it happens. I think a lot of people, concerned over potential side effects that haven't materialized, are low balling the dosage that worked in the study. I wouldn't rock that boat. Don't mess with the magic formula UNLESS you are absolutely certain you HAVE to. I do know, FOR CERTAIN, that Naltrexone SR will not work. Has to be Naltrexone. If Transdermal Patches slow the release of Naltrexone, then you MAY be transforming your Naltrexone to Naltrexone SR. I dunno. But I wouldn't take that gamble unless there was ABSOLUTE need AND proof positive that Naltrexone via T.D. is just as effective as it is in pill form. If you have been fortunate enough to find a doctor who will prescribe LDN, AND you have access to a pharmacy that knows how to properly compound it at 4.5 mg, then my best personal piece of advice is to get your 4.5 mg pills, and have a little faith AND a whole lot of patience. Courage helps too. Cross your fingers for 12 weeks.
 
Hello- My father has ulcerative colitis and we are located on LI. We are wondering which doctor on LI is prescribing you LDN. His doctor hasn't heard of it (like most). The only doctors I can find are in the city which is a bit too much of a drive for him.
 
Hello.
We have different threads on LDN. Here's one. Press HERE!

Sorry my knowledge is limited on LDN.
However, kimmidwife, kev, DustyKat and David know far more about it than I do.
I hope you find some answers.
 
Hi livilou, Chloe has been on ldn since November 2011. Our wonderful pharmacist told us to titrate the dose like you are doing to lessen side effects. Chloe did have some dizziness in the beginning anyway but it lasted less than a week. She was also tired in the beginning. I notice that she feels best when she has gone to bed early. Going to bed early is better than staying up late and sleeping in, for Chloe anyway. She takes a liquid ldn and I try to give it to her at 9:30. Ldn has worked wonderfully for her so please just hang in there with it and hopefully it will do the same for you.
 
Hi Couponbeck! I contacted Skip's Pharmacy and he gave me the name and number to a holistic doctor in NYC, who did a phone consult with me. I gave him my child's medical history and he faxed the prescription to Skip. You can e-mail me and I will give you the name of the MD who we used...when you call, they will take your credit card info, and set up a time for the MD to call you back. After the consult, you can e-mail the MD with any questions you have, he is very good, always answers my e-mails within 12 hours. @LittleChloe.....Hi!
So happy to hear your daughter is doing well with LDN! Olivia is still on the transdermal LDN and is feeling good, however,she had some bleeding at the end of July. She is getting scoped on August 28th to see if the drug is keeping inflammation at bay...if not, we are probably looking at methotrexate in the near future (I am hoping and praying for a clean scope!) She has really been tolerating the LDN well, no real side effects after that initial dizzy spell, and we did titrate up slowly. Hoping for good news next week! Kim
 
Hi Livilou,

Good luck with the scope!!! I hope all is well and she continues to do well with LDN alone! :rosette2:
 
I'd like to toss something out here (although I'm not 100% sure if this is the best thread to toss this idea around in... not that there's anything wrong with this thread. No, it is more a case of not wanting to inadvertantly hijack it, OK?). Anyway, here are the thoughts that crossed my mind. One of the key reasons I had when I plunged into trying LDN was that I was hoping it would prove itself to be 'safer' than the alternatives yet equally effective on the off chance that my children would develop IBD. I think any parent would understand that... no one wants to see their children bear this monster, plus with the heredity aspect, the guilt would kill me. So I did. And LDN did. But here's the thing... if I hadn't, and I was reading someone elses story how LDN worked for them, I'd be sceptical, VERY sceptical, and if I was reading about it not for myself, but for my kids.... well, I'd be very hard pressed to take that gamble. You know what I'm saying? There have been so few tests, and the way the medical world works, it looks as if there won't be a whole lot more coming down the pipe to re-assure anyone soon.

If only there was a similar case, involving another drug, where there wasn't a profit motive.... just research for the sake of research, and just a handfull or so of studies to back it up. That's when the light went on in my head. Pardon me for taking so long, but it is a rather dim bulb. There is a close precedent, if you will. A drug originally intended for another purpose altogether. Then someone, somewhere, theorized that a fractional dosage of this drug, taken daily, might offset or eliminate a potentially deadly disease. I know there was some testing done (I haven't researched how many, but I think it was only a handfull or so), and it showed very good results. Not only could a small dosage of this drug ameliorate this deadly disease, it could also help in life threatening events to improve ones chances of survival dramatically. And, like LDN, this drug was way past patent protection... there were/are generic versions available. It is very modestly priced, so no pharmaceutical giant would stand to profit from researching it any further.
But, here is where this story differs from LDN. It wasn't treated with overt suspicion by doctors, or considered voodoo, or snake oil, or untested (tho it is similar in that aspect to LDN). No, it was promoted, advertised, brand name and generic pharmaceuticals got on board, and produced these pills in their fractional form; and the general public ate it up. In fact, I'd estimate that you'd find this drug (in that form) in millions of homes. Yet it does have some nasty potential side effects, up to and including the possibility that a person taking it might bleed to death internally. Think I'm making this up? Care to guess what drug I'm alluding to? It's the lowly aspirin (ooops, brand name). Make that an ASA.
Yet, if you have coronary artery disease, or suffer a heart attack (like Rosie O'Donnell) an 85mg dose of ASA (approx. 1/4 of a standard 350mg pill) daily might save your life. Or, if you have an undiagnosed ulcer ready to pop, could threaten your life with 1 pill.

Anyone who feels this analogy is overstating things, please feel free to jump all over me.
Personally, I think it shows that the perceived risks of a drug depond on whose side the doctors AND/OR media come down on. I believe low dose AS er, ASA, is a bona fide life saver. I also think low dose Naltrexone is a bona fide life saver. It just has not had good press. Shame that our available treatments need to win a popularity poll with doctors.
 
Thanks for starting this thread because I intend on asking my son's doctor about starting him on LDN in addition to the Pentasa that he currently takes since his doctor keeps encouraging us to start him on Aza because she feels Pentasa is not strong enough to keep him in remission. This thread has been very informative and hopefully our doctor will consider LDN as an option.
 

Latest posts

Back
Top