LDN Update...

[Livilou]

My 16 year old daughter has been on 4.5 mg of transdermal LDN now for 12 weeks. Things have been going well, she has had no CD symptoms and gained 7 pounds. She feels and looks great. Last night she returned home from a mini vacation with a friend, went into the restroom and reported to me that there was bright red blood in her stool. Also, last week she had an accident in her sleep, which has not happened in years. She has been officially off Entocort now for almost 2 weeks. We are going to see her GI next week to discuss scheduling a colonoscopy. Could her CD be rearing it's ugly head after weaning off steroids, or is the LDN not doing it's job? Liv has failed other meds in the past and developed thyroid cancer while on Humira. I was hoping to keep her off the more toxic meds for as long as possible...hate this disease. Kim

 

[ThatsWhatSheSaid]

I'm so sorry. I don't have any information or knowledge of LDN. Just thought if I responded it would bring your thread back up to the top. So your daughter got thyroid cancer and they attributed it to the use of Humira? That's horrible. I am pretty sure I need to go on stonger medicine but I'm scared because of that sort of stuff.

 

[Kev]

My concern would be the transdermal method to deliver the LDN. I have no info to offer on whether it would or wouldn't work that way; just that the original study was strictly via oral doses. IF the transdermal method isn't effective, it may have been the Entocort that caused her to improve... and now that she is off Entocort, she may be starting to flare. As I see it (and this is just my humble opinion, with no training or science to back it up) IF the LDN isn't working, you've no way of knowing at this stage whether or not oral LDN would or wouldn't work. LDN doesn't (unfortunately) work for everyone, but given the other issues at play here, IF it did work, or could be made to work, fighting off Crohns may not be its only benefit. Was there some insurmountable reason for going with the transdermal patches? If not, you may want to re-visit oral.

 

[Livilou]

@ThatsWhatSheSaid....thanks for your concern and support. The MD's really are not sure if thr Humira actually caused the cancer, they just do not know. Liv is doing well after the treatment and her scans were negative, thank goodness. However, the radiation oncologist did inform us that the cancer treatment, RAI (radioactive iodine) does put her at an increased risk of lymphoma/leukemia. Great, just add another bilologic, and that will really take me to the edge! It's a tough decision to make as an adult..it's even more difficult to make for a child. Good Luck to you and keep in mind how low the risk actually is to develop cancer while on biologics.

@Kev..when we ordered the LDN from Skip's pharmacy, Skip had suggested TD LDN for Liv due to the possibility of intestinal inflammation and her inability to properly absorb the drug. I did express my concern about TD working as well as oral and he insisted that TD is just as effective...he explained the pharmacokinetics of the TD form and it does make sense...others will argue that oral is more effective. I just don't know....I would be willing to switch, but at this point, not sure if we have time. Not sure if her body has to readjust to the new transmission...I guess I will be putting a call out to Dr. Skip next week to find out. Our GI has restarted the steroid, at a higher dose just to cover Liv until we could scope her sometime in August. I would love to keep her on the LDN, even if we have to restart toxic drugs, especially for it's cancer fighting benefits. And, the TD cream is not delivered via patches...it' actually a syringe with the cream(made from Emu oil as per Skip) Liv squeezes 0.1 ml/4.5mg onto the inner aspect of her arm, and rubs it in. The skin is very thin there and the drug gets absorbed directly into the bloodstream, bypassing an inflamed and ulcerated gut. Thanks Kev! Kim

 

[xmdmom]

Livilou,

On www.ldnscience.org/ website FAQ, they write

"Can LDN be prepared transdermally in a cream form or patch?

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/low-dose-naltrexone-ldn/questions-and-answers

I don't know if this is definitive but I thought I'd share it with you.

 

[Kev]

I had a couple of pharmacists insist that compounded pills had a potency of nearly a year. They revised that, first to 6 months, then to 3 - 4 months. I NEVER use pills older than 90 days. Before I became ill, I was in IT. My career prospered/flourished despite my age due to a couple of things... I knew I could outwork anyone, whether or not their IQ dwarfed mine.. AND I took/treated everything one of those young, hotshot brainiacs would tell me with a grain of salt until I'd researched, tested and confirmed or rejected it to my own satisfaction. The latter has saved my backside on more than one occasion. I would suggest that UNTIL you have proof she can't absorb the drug orally that you opt for the proven oral method. And as for going back on Entocort to tide her over till the scope, that sounds like a sound strategy. And, if I might offer (a little late, but then afterthoughts usually are)... there might be nothing 'bad' happening here despite these warning signs... Healthy people can/do get diarrhea, so her accident may have nothing to do with IBD. As for bright red blood in stool... frightening, yes, but does it mean flare? Maybe, but it could be a tear or small fissure from something she ate, or... I posted some pics of the scar tissue I have inside me. When I tried in my minds eye to visualize my internal scarring... I envisioned only 2 dimensional scars along my tract. I never pictured strands of scar tissue spanning my intestines from one side to the other. Imagine what would happen if one of those strands tore from the passing of fecal matter. I expect there would be bleeding until those tears healed. It may be just that... and nothing more.