Low Dose Naltrexone

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kimmidwife

kimmidwife

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Sep 19, 2010
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I was wondering if any of the parents here have tried this treatment for their child and what the outcome was? I am also wondering why I never heard of this before? Why are doctors not keeping us up to date on all possible treatments available. Why do they push certain ones? I just don't get it. If it was me I would educate my patient on everything.
 
There are strong feelings on both sides of the LDN coin. Our doc has not seen the success others claim. The studies are limited, especially for peds patients (my understanding anyway).

If you go this route, I hope you'll share.

J.
 
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Our 15 year old daughter was just diagnosed in September of this year. I was fortunate enough to find this forum while sitting in the hospital on my laptop. I came across the information for LDN and my husband and I decided that we wanted to try that first. No doctor recommended or even mentioned LDN. They wanted us to get started right away on 6mp while tapering on prednisone. They also kept bringing up reminicade. We declined these drugs and began our own research on LDN. To my surprise when I asked Chloe's GI if he would give her a script for it he RELUCTANTLY agreed. He had heard of it but was not familiar with how it works or even how to write the RX. I gave him the studies I had printed out and he wrote the RX out the way it was written in the studies and called it into the compounding pharmacy that I gave him. I had prepared myself for a battle and nearly cried with joy when I realized we were getting our way. When I went to pick it up at the pharmacy I asked the pharmacist why more doctors weren't giving this to their patients. He basically said its about two things. #1. Naltrexone is not approved by the FDA for crohns disease and some docs just aren't comfortable stepping outside those lines. #2. It may never be approved by the FDA for crohns because it just too cheap. The patent is expired and it's a generic drug meaning any drug company that wants to can make it. So why would a drug company want to spend millions of dollars on various drug trials to prove Naltrexone works for other diseases when they can't corner the market and make money. There is no pharmaceutical rep coming into your doctors office with glossy posters and information on LDN. Any information a doctor has on LDN comes from his own research or from his patients. And there are certainly no tv or magazine ads encouraging people to "ask you doctor about LDN". So a busy doctor will education himself on the current FDA approved, mainstream treatment because that's what makes sense for him. Our pharmacist said he is getting more and more requests to compound it so he knows the word is getting out and people are asking for it and at least for now that's what it's going to take. As for Chloe, she is doing really well. After about one month on LDN she began having normal bowel movements for the first time in months. She has more energy and has gained 9 pounds. She had a follow up appointment last Friday and I'm still awaiting all the blood labs but her GI told us "something you are doing is working so keep doing it". (I still don't think he wants to admit that LDN works) I've also paid attention to all the posts on here and we are taking vit d, vit b 12 shots, probiotics, colostrum, fish oil and digestive enzymes. I wish you the best and hope you get what you want for your daughter!
 
X2 on what LittleChloe said! Just wish we would of found LDN earlier so Sami would'nt have had to taken all these other meds.with such serious side effects.
 
The brand name is Spectrazyme. It has protease 1,2 and 3 and something called amilase. I don't know exactly what all these do but the naturopath told us not to run out. Chloe doesn't like to eat if she doesn't have one to take with meals because she says her stomach feels alot better when she takes them.
 
LittleChloe,
I am going to look into this more. I never heard of digestive enzymes for persons with Crohns I know people with cystic fibrosis take them.
 
Thanks all for the info. I sent Caitlyn's doctor an email with a link to the study at Penn. Hopefully he will review it before we see him on Monday.
 
Hi there, the two main studies (I know of) documenting Crohn's improvement for LDN are:

-American Journal of Gastroenterology, January 2007 issue: "Low-Dose Naltrexone Therapy Improves Active Crohn's Disease" by Jill Smith

-Digestive Diseases and Sciences Journal, 17 February 2011 (published online 08 March 2011): "Therapy with the Opioid Antagonist Naltrexone Promotes Mucosal Healing in Active Crohn's Disease: A Randomized Placebo-Controlled Trial" by Jill Smith

These, I believe, were done to satisfy the Phases I and II of the drug approval process. There may be one currently in progress for children on LDN, not sure. These were largely funded by Crohn's groups. I think the remaining phases are kind of insignificant and deal more with safety, which was already approved when Naltrexone was accepted 30+ years ago at 10 times the LDN dosage, and marketing purposes. When this is widely accepted, it will probably be another 3+ years in my layman's estimation.

I would print out both the above studies and explain the drug is a cheap generic for an off label use--cute pharma sales reps aren't going to be inundating his/her office with pretty graphs and selectively picked, company funded studies that minimize risks and exagerate benefits of LDN. No matter how beneficial (though it is not a cure; I think it halts progression in 85% of users and 50%(roughly) of those actually show mucosal healing) LDN may be, there is no money to be made on behalf of drug companies.

I'm uninformed on the child dosage of LDN; doctors may have questions about this. Even with adults, it sometimes takes toggling dosages according to metabolism. As with any pharma drug, I would take it with tons of water to offset whatever minute liver effects it MAY (though none have been implicated, I firmly distrust everything big pharma peddles) have by longterm usage.

I had to go behind my local doc's back to obtain a script; I'll tell him on next visit. Good luck.
 
Okay I am not a very happy camper right now. We waited half an hour in the waiting room and then they tell us the doctor is running at least 1 hour behind. We couldn't wait because we had to get my younger 2 from school. Meanwhile Caitlyn is complaining of bad pain again today! I am soo frustrated. I told the nurse just have him call me and we can discuss it over the phone. (Which is what
I wanted to do in the first place but he insisted on seeing us in person).
 
I am SO sorry...(((HUGS))) THat is THE most frustrating thing EVER!! Hope that he calls you, and quickly!!
 
OMG, don't blame you at all for being upset!!! That is so disappointing and frustrating! I hope you hear back from him quickly too!
 
Fair Dinkum Kim! That just sucks...boooooo! :voodoo:

I hope you don't have to wait too long for that call!

Dusty. :heart:
 
I am going to ask my G.I. about LDN as well. Thank you for starting this, I hope we can all learn from each other. Let us know when you get that call. Hang in there!

((((Hugs))))))
 
Kim,
How frustrating!!! Is there any way you could get hold of his email address? I did this, and if I ever have a question, I just send him an email. Of course, I only do this if it is very urgent. I just wanted to let you know that in my past research, I corresponded with Dr. Ian Zagon, who is a world renowed leader in LDN research. I asked him if it could be used in conjuction with Remicade and how much a 12 year old would need, and this was his reply:

Sorry to hear about your child.
Yes LDN and Remicade are fine. At age 12, use 1 mg of LDN every day. Buy it from Skip's Pharmacy in Boca Raton, FL - they are on the web.
Good luck.
Dr. Zagon

We emailed back and forth, and he said for an older patient to start on 3mg.

Just thought I would share this with you. I hope you hear from the doctors office today!!

Kelly
 
Ah hell Kim. :( I hope he picks up that phone soon...everything crossed for you hun!

Dusty. xxx
 
Arrrgh! No call still! We need a new doctor but have run out of options here there is no one else. We already left the other GI group due to a difference of opinion with that doctor.
 
Won't help you much but at Stephen's next appointment I will also be asking about LDN... I'll certainly post whatever I learn and if his doctor would even be open to the idea.

I'm sorry for how frustrating this must be for you! :ghug:
 
Actually just one idea... the LDN site (believe it's ldn.org???) provides a small list of compounding pharmacies. I'd thought to myself that if I ever strongly wanted to start Stephen on this and his GI wouldn't prescribe it, I would contact the pharmacy and ask if they could provide me with a list of doctors who prescribe it. Not sure if the pharmacy would be allowed to do this or not but it was just a thought I had... Perhaps, going this route, you can find another GI, maybe a bit further but, perhaps still a manageable distance.
 
Yay! he finally called and he said yes to the LDN. He is going to call the pharmacy at the hospital and have them prepare it for us. We are also going to increase her amitryptalline to 40mg to see if that helps with her pain and she is back on the entocort 3 pills per day for a few weeks. Yay Yay Yay!
 
I remember reading that you should choose pharmacies carefully...not all of them compound correctly...let me see if I can find a link...
 
From the LDN.org site:
IMPORTANT: Make sure to specify that you do NOT want LDN in a slow-release form.

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.

Fillers. Capsules of LDN necessarily contain a substantial percentage of neutral inactive filler. Experiments by the compounding pharmacist, Dr. Skip Lenz, have demonstrated that the use of calcium carbonate as a filler will interfere with absorption of the LDN capsule. Therefore, it is suggested that calcium carbonate filler not be employed in compounding LDN capsules. He recommends either Avicel, lactose (if lactose intolerance is not a problem), or sucrose fillers as useful fast-release fillers.
> IMPORTANT: Make sure to fill your Rx at a compounding pharmacy that has a reputation for consistent reliability in the quality of the LDN it delivers.

The FDA has found a significant error rate in compounded prescriptions produced at randomly selected pharmacies. Dr. Bihari has reported seeing adverse effects from this problem. Please see our report, Reliability Problem With Compounding Pharmacies. Please see the above list of recommended pharmacies for some suggested sources.
 
I asked him about that Angie,
He said the hospital pharmacy specialized in compounding meds for kids he is going to speak with them and hopefully they can do it.
 
Glad you already read it, Kim...sorry if I sounded know-it-all-ish...had two kiddos on my lap lol! Best of luck with LDN...it is on my list to discuss with my doc if Remi fails :)
 
I am so happy that the doc called and it is all ahead go! :panda::panda::panda:

Good luck! I hope it works wonderfully well for Caitlyn, bless her...:goodluck:

Dusty. :heart:
 
Angie,
You did not sound at all like a know it all. I am grateful to you and everyone on this site for all the info everyone has given me!
 
Great news pharmacist just called me he knows exactly the right way to compound the medication. I
Over all the details with him. He will have it ready on Monday.
 
Oh wow Kim, that is wonderful news...:)...I so hope it works for Caitlyn. Fingers, toes and everything else crossed!...:goodluck:

Dusty. :heart:
 
Hi Kim, my son is now 18 and was on LDN for about a year and a half, I noticed that Dusty posted one of my threads re LDN, but I have posted an update (somewhere) about Mitch coming off of LDN and going on to azathioprine.
LDN kept the disease almost at bay - CRP ran between 8 and 15, and the GI was okay with that, but he started having some problems, which in hindsight we now know were bacterial issues. He was prescribed cipro which took care of those issues almost immediately, but the GI wanted him to try the aza before he hit 18 and was out of Children's. At the time we didn't know that the LDN was doing such a good job (after going off of LDN his CRP shot up to the 40's). On LDN his food choices were very limited, lots of reactions to different foods.
It took azathioprine almost 6 months to become fully effective (by 4 months we knew things were going in the right direction). He's now been on aza almost a year (it will be a year in April). He's feeling great, handling university just fine, part time job, and is able to eat most foods, still gluten free though. Crp is running under 3 consistently and has no side effects at all.

Good luck with the LDN, it wasn't our wonder drug, but it did a pretty good job, and I'm still glad we tried it.
 
DMS, when you say crp is running under 3, does that mean 3.0 or .03 or .3? When my son's crp was 3.6 the doctors were very worried. His is now -.05 (I know its explained differently...like maybe our 3.6 is also 36?)

This isn't directed at anyone, I just had a totally independant thought about meds. It can be so daunting and overwhelming. I often think...are we doing the best one or not?! So here's my thought: I just wanted to add that getting things 'ok' might be good when they are adults. I think when they are; before/during/or just after puberty we need to strive for 'very good' instead of 'ok' crp and sed rate levels. (I understand that isn't always what happens, but pick the medicine that gets the upmost best results to keep their intestines in very healthy shape.) I have a friend that is so scared of biologics that she's letting her kid stay around the 30-50 SED mark rate. Her doctor thinks that, what he calls; 'a little inflammation', is ok.

I'll be interested in this LDN route and its results for Caitlyn. I don't know anything about it and am interested in learning. I'll be honest that it concerns me that you have to order LDN on the internet. And what are the claims of 'vivid dreams'? Does it affect the brain? (As you can see, I don't know anything about it!) :)
 
Good luck Kim! I'm so excited for Caitlyn! I know it may take a bit of time but I hope she reacts positively as quickly as possible!

Kathy, can you tell me why you would be concerned about a sed rate of 30? Stephen's last test showed a sed rate of 30. We are going to see his GI in a couple of weeks but, I have been told the same as your friend by his GI's clinic (was actually his nurse) that a little bit of inflammation is okay. I wasn't 100% happy with that but was okay to see how things progressed until Stephen's next apptmt. My concern was that prolonged inflammation, even minor, would eventually cause damage. Is that your concern as well or are you concerned about something a bit more specific?
 
Hey Kathy,

CRP is reported in either mg/dL or mg/L hence the difference reference ranges:

C-reactive protein (CRP) 0–1.0 milligrams per deciliter (mg/dL) or less than 10 mg/L (SI units)

Kathy and Tess, do you know why they are using ESR (SED) rather than CRP as the inflammatory indicator? ESR is an older test and doesn't respond to inflammatory changes as quickly as CRP.

A little bit of inflammation is okay never sits well with me either. Chronic inflammation will invariably lead to changes in the bowel no matter how mild, and as you say Kathy, when you are dealing with children/adolescents that inflammation impacts on more than just their bowel.
As you may know, Matt was diagnosed super fast with next to no symptoms. His inflammation was diagnosed, via scope and pathology, as mild to very mild. Things went downhill from there but even with the mild insidious disease that must have been present for quite some time I now realise, in hindsight, the effect was quite significant to his growth, energy and personality.

Dusty. xxx
 
Tesscorm, my concern and our GI's concern was prolonged inflammation (even if mild). When Brian was diagnosed, his SED rate was 30 CRP was 1.9, then slowly climbed over 8 months. Our GI didn't like that one bit!! They want SED below 14 and CRP at .05. And fast!!

Dusty, Our GI seems to look at CRP and SED equally. I agree with you that the CRP is more important and shows what is going on at that moment. Our GI wants SED rate and CRP to say the same thing: No inflammation at all.

PS, Brian's SED rate climbed to over 70, but in the beginning, when it was still only 30, his scopes showed he had moderate to severe damage inside. I remember being surprised.(Luckily only in 2 areas of his large intestine). When is SED was over 70, he also had a small fistula and abcess so that is probably what made the number so high. But I'm sure the abcess came from the months of prolonged inflammation while we juggled with azathiaprine and prednisone.

And his very small size is also what happened. He's got a lot of catching up to do.

PS. Not until we got started on Humira did his inflammation normalize. His SED rate is 12 and his CRP is -.05. (Note to Kim though, we never tried LDN, so I'm not weighing in on that by spouting these numbers. I'm only weighing in on the importance of getting inflammation normal)
 
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Kathy,
We are getting our LDN from the children's hospital. Our doctor told me most children's hospitals will compound meds. I too would be leery of buying a medication for my child off the internet unless I knew it was a reliable internet pharmacy. I actually take a medication that I buy from a canadian pharmacy that I found on the internet several years ago and I have not had any issues.
 
That's good to know Kim that there are some good internet pharmacies. (I'm a born skeptic and worrier!! Come from a long line of them!!)
Please keep us posted on how Caitlyn responds to her new medication. Hope all the best for sure!! As Dusty says...everything crossed :)
 
I sure will keep you all posted! I am nervous and excited about it. Meanwhile Caitlyn is feeling better back on the 3 entocorts a day and was in a good mood all day today. She is actually sleeping over at a friend's house tonight! Yay!
 
That is great for Caitlyn - she must be feeling so much better to stay over at a friend's home! Best feeling in the world when you see them enjoy themselves!

Thanks Kathy, Dusty - the continuous inflammation has been my worry too. God, I wish I could just stick my head in the sand and pretend I didn't have to think about any of this! :( Have been really feeling the weight of the concern this week and my daughter worrying me a bit too. Monday evening she said her pinky (joint) was hurting, woke up Tuesday at 6am because of the pain, I thought she might have sprained (or fractured) it at soccer on Sunday so asked my mom to take her to the local walk-in. The doctor ordered x-rays and bloodwork, said she wanted to check for arthritis as well as injury. :confused2: As I wasn't there, I couldn't ask any questions and now all I can think is RA. Stupid:ybatty:... I know I'm blowing it totally out of proportion in my head and probably jumping way too quickly to conclusions, guess because I'm worried about Stephen's recent results. Just feeling way down this week...:yfrown: Just need to give myself a shake and get over the 'woe is me' feeling. (Sorry Kim :blush: ... didn't mean to sidetrack your thread! Your LDN discussion is way more interesting and meaningful than my little breakdown here!:tongue: )

Dusty - I don't know that the GI looks 'to' the SED rate, I've only been given prior CRP results of Stephens, not SED rates; I was the one who requested the latest SED rate when I took him to the walk-in clinic. I know his GI tested his SED rate earlier but, that was when he was first diagnosed and, while I remember the words, they meant nothing to me at the time.
 
Doh! Sorry Kathy and Tess, I thought they were using ESR independently, not in conjunction with CRP. :redface: All makes sense now. :)

Oh Tess, I know the feeling well hun...:hug:...but if you didn't feel this way then you wouldn't be the fab Mum that you are. It's these very worries and concerns that make us the best darn advocates for our kids that we can possibly be. I hope more than anything all turns out well for your daughter and it is just a common old sprained pinky.

Dusty. :heart:
 
Tess,
I totally know how you feel. Don't worry you are not sidetracking my thread. Try to keep your head up and remember we are all here for you.
 
Tess,
I also totally know how you are feeling!! Obviously from my post where I'm posting all Brian's numbers (That started a whole year ago) shows its on my mind ALL the time. I can't escape it either. I also blame every ache and pain on Brian's crohn's or his med, Humira. Last week he was complaining of being really sore in both his thighs...I immediately began my silent worry drill for a couple days. Then one night Brian remembered that he'd been playing this game (every day after school) on Xbox Kinect, (Wipeout), where you have to do lots of activity involving squatting and jumping, etc. Duh...the sore thighs!!

We are here for each other for sure!!! Obtaining remission is great, but it doesn't make the worry go all the way gone :) That's where we can help each other.

I hope my questions and posts on this thread hasn't caused any of you to worry...its actually my own worries and kinda justifying my own path. And I never even knew about LDN so I'm just experiencing a bit of: Did I miss something I should've considered.

Hugs
 
Thanks everyone! I appreciate the support :ghug: And, Kathy, certainly wasn't anything you said... my question re the sed rate was only because I wasn't sure if there was something I wasn't aware of re the SED rate.

When Stephen was diagnosed with crohns, it was paralyzing and knocked out my basic assumptions about life (the 'it can never happen to me...' and 'any problem can be solved!' beliefs). But, the EN was a very acceptable treatment - no side effects, would give him the nutrients he was probably always short on being a picky eater, he took to the treatment very easily and responded well very quickly. :smile: It lulled me into a false sense of comfort. I had my worries (as you have all heard!) but, deep down, I believed in the EN and that it would keep him healthy. Getting the recent results and having the GI move up his appointment once I sent him the results almost felt like I was reliving the diagnosis. All of a sudden, I was thinking meds - what to ask for, what would be recommended, what would be the side effects, how would it affect him, etc., etc. You all know the worries. Then, when my daughter mentioned the arthritis, immediately I looked up RA. I can tie in lots of symptoms to RA - she sometimes complains of sore feet, sore knees, sore hip. In the past, I always attributed it to her very physical lifestyle - soccer, horseback riding and tae kwon do (pretty much 7 days a week)! All physically demanding activities that put a lot of strain on those joints. But, now... is it the activity or is it RA? And, then, of course, I had to look up treatment... well, there is no equivalent EN treatment. We're right back to all the meds I'm afraid to deal with... but now with both kids!

God, am I ever depressing!!?? :) I feel guilty being such a whiner, there are so many others here which so much more to deal with!!! :ybatty:

Am seeing my daughters GP on Tuesday, at least we'll know where we stand with that... Then Stephen's apptmt is Jan. 25..., not too long to wait either...

I'm also dealing with Fibroids myself... I'm low in iron, etc. - wonder if my 'down' feelings are also partly due to side effects from the fibroids??? Also seeing my specialist on the 25th... maybe I'll have some answers for me too!

Thanks again everyone!! It helps so much to let it out and have others really understand!:hug:
 
God, am I ever depressing!!?? I feel guilty being such a whiner, there are so many others here which so much more to deal with!!!
Click to expand...

No you're not! Just read some of my old posts if you want see depressing and pissed off! :lol:

Let me tell you something Tess. When Sarah was diagnosed she had been undiagnosed for quite a while and was very ill. The reality hit hard and fast and in many ways it was a relief to have a name for her illness. I knew nothing about Crohn's and for a long time I lived in a honeymoon period, she was getting better and I could breath again. Then as time went on the true reality sunk in and at times I struggled with that, I still do to some degree.
Then when Matt was diagnosed my world came crashing down and do you know what I did? I curled up in a ball and sobbed.

:hang: Mum, you are doing a fabulous job and the emotions you have are normal, natural and just. :hug:

Thinking of you, :heart:
Dusty. xxxxxxxx
 
Let us know how the appts. go Tess! We all came to this site for the same reason, heartbreak for our own children. There is certainly no shame in that!
 
Thanks guys! I don't often feel so overwhelmed... guess just one too many things at the same time! I'm feeling a bit more in control - really, thanks to you all - nothing has changed other than I don't feel like I'm dealing with it on my own! :ghug:

Hopefully, tomorrow's apptmt will be just a 'sprain' issue (and then I'll really feel silly for being such a wimp over nothing :eek: ).

If that's not the news, then, getting back to the origins of this thread!!, I'll be taking a much closer look at LDN as it can also help RA.

I will be speaking to Stephen's GI about LDN - Sick Kids' hospital, here in Toronto, has a strong reputation in leadership, research, treatment, etc. When Stephen was diagnosed, I was told they were one of the leaders in pursuing EN treatment (in Canada) and had quite a bit of experience and support for it. I'm curious if they have any patients on LDN and their experiences with it. I'll post their comments/thoughts on LDN...
 
Tesscorm, I just wanted to say you are doing a fabulous job. It is so hard to have a child with a long term illness, that is enough to try and deal with. So it is no wonder that something new happens that it would be hard to cope with. I hope that all is well for your daughter, let us know how it goes.

An kimmidwife, I have been following your thread about LDN, I hope it goves a great response and Caitlyn goes well on it.

It makes me wonder why patients have to push so much for treatments that are not the bog-stand ones, surely these specialists should be reading and researching on all available treatment options for our kids? Anyway, enough of that,

best wishes to you both,
LilyRose
 
Hi All,
We got the LDN yesterday afternoon and guess what? It is in liquid form. Caitlyn freaked out saying use is not going to take it. After a long argument I got her to take it this morning and she almost vomited she said it tastes awful. I just spent 2 hrs calling different pharmacies to find someone who could make a capsule and do it correctly. Finally found someone and I called the insurance to make sure we can fill it again in such a short time they said yes just to have the pharmacy call them and tell them the situation and it should not be a problem, Whew if it is not one thing it is another. I just can't make that child happy lately. (You would think she would be happy it is not a shot!)
 
Just seems NOTHING can ever run smoothly!!! But glad you were able to get it resolved quickly! :)
 
ARRRRRRRGH!

Thank goodness you were able to get things sorted! :)

Lordy, after all you have been through I hope more than anything it does the trick...:goodluck:

Dusty. xxx
 
Ugh...how frustrating! Glad the insurance company isn't giving you a runaround and ytou could get it settled quickly. Hoping ldn works wonders for caitlyn!!!
 
Caitlyn's got a whole fan club rooting for her!!! I really hope it works for her!!!
 
Kim, I'm glad you were able to get it in a capsule! It'd be hard to drink something that tastes awful...and its not like she just has to do it for only a brief period like an antibiotic.

Is LDN like azathioprine/6MP...the med has to get to a certain level in your body before it begins to be theraputic?
 
The pharmacy called today and said they had an issue with the insurance. They got them to approve the medicine but they would not pay for the filler they use (lactose as Caitlyn does not have a problem with dairy) They said it is $8. I told them I am not going to argue over $8. I told them to go ahead and make them. Hopefully they will be ready by tomorrow. Meanwhile today she took the liquid again without an issue other then gagging on it. She had a little dizziness today which is a side effect but it was tolerable. She was in good spirits. Let's hope it continues!
 
Chloe takes the liquid and says it is very bitter. The pharmacy gave us a dosing syringe so we fill it and she shoots it down the back of her throat. Then she immediately takes a big drink of ensure to wash it down. Just thought I'd suggest this in case you have to take it a few more days while they make the pills. Don't get discouraged by the side effects, they do go away. What dose is she starting at?
 
Good news! Was going to ask this morning but thought it might be too early for her to have noticed anything!
 
How quickly will you be able to do labs?! I'm so excited for that :) That's getting too far ahead!! I sooooo hope this is a great thing for caitlyn. It then opens up a big door for the rest of us too
 
Hi All,
I have been off the site now for almost a week due to a death in the family. My MIL lost her battle with a brain tumor Friday night. It has been a very difficult time for our family. Anyway the good news is other than the first 2 days of her period Caitlyn is doing great. She is totally off the Entocort and on the LDN now for almost 6 weeks. She has been going to school and catching up with her work and feeling great! She lost almost all of the prednisone weight which she is really happy about. She has started participating in PE for the first time all year. I am continuing to keep my fingers crossed and pray!
 
Hi Kim :)

So great to hear that Caitlyn is feeling so good ! :dance::dance:
I hope it just continues to get better and better

I'm terribly sorry to hear of your MIL's passing, that must be so hard. :hug:
 
Kim,

I'm so sorry to hear about your MIL. A very close friend died of a brain tumour just over a year ago; I know how very difficult it can be to see a loved one suffer in that way. :(

But, am very happy to hear about Caitlyn!!! After all her struggles, you must be ecstatic to see her so well! I hope it keeps on going for a long, long time! :) :)
 
I :heart: success!

I've been obsessing on here on and off all day in a fear state and just came across this...made me happy.

Good going, Kim, for looking into a lesser known treatment!
I'm going to ask about it at V's appt with the bigdog at Uni on Mar 14.

KEEP updating!
 
Hi All Just got Caitlyn's labs back and all looks good! Her CRP is down and everything else is looking good!
 
That's GREAT news!!!:dance::dance::dance: After going through so much, you must both be ecstatic.

Just out of curiosity, what does her GI say about the results? I don't recall but was he/she encouraging, doubtful re the LDN?
 
He fought us and did not want her to use it. After much arguing he finally relented. I have not spoken with him only his nurses. Her next appt is end of April.
 
AWESOME. :tongue: ( I just liked this smiley)
This is what we shall try after I d/c Humira, which I intend to do after the 3mo trial if not sooner.
I wish I'd gone with it first, actually.
WHY don't docs push it since it's relatively harmless...??
 
I'm really so glad this is working for Caitlyn!

I'll be curious to know what her GI thinks of the results. Has she changed any of her meds since starting LDN? When I brought up LDN with Stephen's GI, he didn't have faith in it and believes its 'success' stories are really caused by 'something else' and then attributed to LDN.
 
Tess,
It is funny that you said "attribute it to something else" Nothing else was changed except she is off the entocort (type of steroid for those who don't know) I have been in touch with the Crohn's specialist we saw in New York to let him know about it and he is also saying oh it must be treating something else and not the crohns. What the heck is with these doctors? If it does not come from the big drug companies with millions of dollars behind it then they don't believe in it. It is like the EN American doctors don't want to believe in that either. Just ridiculous. Shouldn't our kids and their health come first? What in the world is the matter with modern medicine? It should be about making the patient healthy and that is it!!!!!!!!!! Sorry I am ranting.
 
Agreed.

The only explanation that makes sense to me is that a GI would be worried that by prescribing an unproven medication (not 'untested', but unproven for Crohns), they are leaving that patient untreated.

But, isn't that the case for all medications? Stephen is being treated with EN - there was never a 100% guarantee that it would work, only that we'll try this FIRST because there are no side effects and then move to steroids if necessary, etc. But, his doctors were risking that he would be 'untreated' while they waited for results. Isn't that the same thing?

I want to have faith in Stephen's doctors because I certainly do not have a medical background and his health is in their hands but, sometimes, there does seem reason to worry that the most unbiased medical advice is not always forthcoming :eek:
 
Well, another valid reason (tho it may be different elsewhere) is that here, specialists are fed by GP's. In short, you cannot get an appointment to see a specialist in any field w/o prior meeting with your Family Physician and having him/her refer you. So, specialists are subject to ... scrutiny.. possible 'shunning' by their local GP counterparts if word spreads they are dishing out experimental treatment to any patient that arrives on their doorstep.
See the Catch22? I'd think your run of the mill GI would pretty much have to rule out ALL other 'accepted' treatments first before putting a patient on LDN, or else run the real risk of having rank N file GP's afraid to refer patients to them. There is a certain logic to it... what if the experimental drug/treatment they offered was just snake oil?
It's just a shame in a situation like LDN; where it HAS the potential to do so much good while at the same time exposing one to such miniscule risk. I think the only way to help in cases like this is to talk to your doctors... your family doctor, your GI, whoever, until they start to listen... to investigate.. to educate themselves. It isn't going to happen any other way that I can see. And those of us who are fortunate enough to get on it HAVE a responsibility to everyone else with this disease NOT to muck about and mess it up. If LDN works for you, stick to the regime and behave yourself. OK, down off pulpit.


OOOOPS. Almost forgot what I started to say.. CONGRATULATIONS. YAY!!!
 
My son's GI was willing to read the article about it, she hadn't heard of it at all and was surprised. She's not willing to put him on it until the pediatric study is done/published, which I totally understand. And maybe it's something we'll try when he's an adult. Still, it's important to be open to all possible avenues, right? We should all be bringing this up with the GIs, I'm really hopeful for this one because of the minimal risk!
 
I understand and appreciate her stance, but I wouldn't hold my breath waiting for a study on pediatric patients for LDN to be carried out in the near future. Naltrexone is off patent protection; there are generic versions of it on the market; and the manufacturer stands to gain absolutely nothing in funding such a study. Naltrexone is dirt cheap, and the generics even cheaper, and we are talking a very low dose. There is no profit for them to be had.

That's the rub. In a situation like this, there is no incentive for the private drug makers to test this drug on children, or adults, or anyone. Only if and when some private group scrounges up the funds to test it will there be testing; and (from my understanding of it) EVEN with testing there can be no regulatory approval because only the drug maker can seek that. And the real downside? Those who are hit by this disease the youngest stand to lose the most. Why? Simply because the longer they are on traditional meds the greater the chances of long term side effects associated with those standard meds. And the more damage the disease can inflict. Personally, those are sound agruments to be made in favour of trialing a child on LDN sooner rather than later, but where do you find a doctor brave enough to agree. I wonder what they'd do if it were their child. I know what I'd do if it were mine. Fortunately, mine are grown, and so far symptom free.
 
Kev said:
I understand and appreciate her stance, but I wouldn't hold my breath waiting for a study on pediatric patients for LDN to be carried out in the near future. Naltrexone is off patent protection; there are generic versions of it on the market; and the manufacturer stands to gain absolutely nothing in funding such a study. Naltrexone is dirt cheap, and the generics even cheaper, and we are talking a very low dose. There is no profit for them to be had.

That's the rub. In a situation like this, there is no incentive for the private drug makers to test this drug on children, or adults, or anyone. Only if and when some private group scrounges up the funds to test it will there be testing; and (from my understanding of it) EVEN with testing there can be no regulatory approval because only the drug maker can seek that. And the real downside? Those who are hit by this disease the youngest stand to lose the most. Why? Simply because the longer they are on traditional meds the greater the chances of long term side effects associated with those standard meds. And the more damage the disease can inflict. Personally, those are sound agruments to be made in favour of trialing a child on LDN sooner rather than later, but where do you find a doctor brave enough to agree. I wonder what they'd do if it were their child. I know what I'd do if it were mine. Fortunately, mine are grown, and so far symptom free.
Click to expand...


Having been in the medical field for 18 years I have to say what Kev is saying here is 100% true. The studies will probably never be finished because there is no money behind them. I am kind of looking at Caitlyn as a study patient on her own. All I know is if when I have a choice of trying a drug with almost no side effects versus those other drugs I am going to try it first. I think Enteral Nutrion and LDN should be the first 2 treatments tried for everyone. There is a saying in medicine which is "First Do No Harm" I think to many doctors are swayed by drug companies and forget about this motto. If not I think EN would be offered to children in the USA prior to prednisone and all these other drugs. I know if it had been offered to us first I would have said yes with out even a second thought!
 
OK, I'll eat my words... (luckily, thanks to LDN, I can eat just about anything). Kudos on finding this, and bravo to Dr Jill Smith for this study... essentially a follow-up to her earlier study on adults. Couple of things that jumped out at me from what I've read so far

"Subjects taking tacrolimus, cyclosporin, mycophenolate, or anti-TNF-α therapy must be discontinued 4 weeks prior to study initiation."

"Prednisone greater than 10 mg or > 0.2 mg/kg orally"

OK, reason I excerpted (is that a word?) those two lines is that many people considering LDN were wondering what drugs they could/couldn't take in conjunction with Naltrexone.
I don't know why these drugs had to be stopped 4 weeks before the trial, or at dosages lower than 10 mg.... the write up didn't say, and it may as innocuous as they didn't want these drugs playing a positive effect that would then be attributed to the LDN. It was interesting to see that "ClinicalTrials.gov processed this record on March 07, 2012" would indicate this is hot off the press. I wonder where/when the report will see the light of day. And how someone (like a concerned parent) can get their hands on it.

One final thought. God Bless Dr Jill Smith. Something to think about the next time we're in the mood to tar N feather all doctors with the same brush. We crohnies need to start collecting funds to erect a statue in her honour.
 
"I don't know why these drugs had to be stopped 4 weeks before the trial, or at dosages lower than 10 mg.... the write up didn't say, and it may as innocuous as they didn't want these drugs playing a positive effect that would then be attributed to the LDN."

Kev,
You are right the most likely reason is they did not want these drugs to possibly interfere in their results.
I am soooo excited to read this as well. Now we just need to get a pediatric trial going so all the people on this forum could benefit. The truth is though many of the drugs used for crohns including cimzia and humira are not approved for children. Remicade was only very recently approved for pediatric use yet has been being used already in kids for years.
 

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