Low Dose Naltrexone

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Hey, when I started LDN in 07, Humira had yet to be approved for treating adults here in NS. Time flies.

Anyway, that is just my GUESS on those drugs. And my personal take on it (whether you can/can/t combine LDN with other drugs) is this... If you want to trial LDN, then trial LDN. Don't cloud the issue with other drugs. If it works, you'll know it was the LDN.. if it don't, then try again WITH the other drugs. I did the LDN solo (except for the 5-ASA). If I can do it, anybody can.
 
Hey Kimmidwife

I'm sorry. I should have articulated that last post better. The reason that I pointed out it was my GUESS is that... many folks will see things in print (here, there, everywhere) AND consider it Gospel. (I used to make a point of teaching my students NOT to take anything ANYONE said as Gospel). I'm a crohnie. I take LDN. I'm not a doctor, medical researcher, authority or expert on anything. Last thing I want is someone out there who reads these posts as saying/thinking "well, I saw this guy on the website who said I couldn't take this drug with LDN". You see where I'm coming from? That's all I meant.
All the best...
 
This has been an interesting post to follow. I wanted to weigh in on a fear that I've developed and see what you all think. Like many of you I believe to some extent anyway that drug companies, some doctors and the FDA all kind of hold hands and scratch each others backs. Here's my concern: My daughter is taking a super cheap drug that is so far working very well at treating her crohns. It has no side effects that she has to take other drugs to combat. Nobody is really making any significant money on her treatment except perhaps the pharmacist who painstakingly compounds it for her. We (and our insurance company) do not have to pay thousands of dollars a year for remicade or humira. Chloe is getting better, not worse, so if she continues in this way she will never need their expensive drugs. Here's the thing: I worry that one day the drug companies that make these big profitable drugs will take notice of LDN. They won't like that people aren't taking their expensive drugs but opting for the generic "unproven" cheap drug. Can they pressure the FDA into making it unavailable when it bites too far into their profit? Would they get the support of close minded docs who net tidy profits from remicade infusions? Someone who knows please tell me I'm being paranoid. I lay awake at night contemplating stockpiling LDN in the cabinet for the day when I can't get it anymore. Seriously though what do you all think?
 
LittleChloe, I don't think there is any way to stop the spread of LDN treatment by anyone barring someone, someday putting forth a study suggesting it does more harm than good. I don't think the manufacturer of Naltrexone (or anyone who offers a generic equivalent) would be on board with that, as .. well, if a 4.5 mg dose has potential side effects, then the much higher doses that the drug is typically perscribed at must have much worse side effects. That is one of the beauties of this treatment. Naltrexone has been around for decades. It was tested AND approved at dosages MUCH higher (I think in the original tests subjects were given 150mg). And even if the makers of Naltrexone were to go under, since it is off patent protection, there are generic versions out there.
No, I think LDN is here to stay (mind you, I'm not a seer, else I would have seen Crohns coming and avoided dairy and red meat). And, I think courageous pioneers like Dr Jill Smith will keep fighting to spread the word AND usage of LDN until it becomes available worldwide. I also believe that everyone who persuades their doctor to consider it also makes inroads into the future of this treatment, hopefully saving not only themselves but other patients down the road. But, unfortunately, that methodology takes time. Here I am, 4 1/4 years later, and LDN remains a little known alternative treatment Vs perhaps (because of its relative safety, efficacy and financial costs) the first choice of treatment. Imagine, a day will come when someone is presented with a diagnosis of Crohns for the very first time, is told there is no cure, but if you take this one pill each night at bedtime your symptoms will stop AND your side effects will likely be just vivid dreams... and it costs about $1 a day. Sure would take some of the sting out of the Dx.

I guess (sort of on a bit of a down note) I'm a little perplexed that, although introduced to the world in the American Journal of Gastro-enterology in the early part of 2007, LDN hasn't made it's way to the forefront of research. I understand why the drug companies AREN'T involved.. there is no profit.. it already has been invented, patented, and gone off patent protection. But why aren't those involved (like the Crohns/Colitis Foundation or other independant researchers) exploring AND pushing for testing and acreditation? (sp?)
When someone tells me that they are raising money to find a cure/treatment for Crohns, I wonder IF they really are; OR are they merely looking to fund the marketing of another NEW drug they can reap huge profits on AND patent protect until the cows come home. Don't get me wrong... those researchers who are looking for the cause or cure for it NEED to continue their work; but something needs to be done by someone so that if you have this disease it is not a full scale battle to get prescribed an off the shelf, registered DIN, approved 4.5mg pill to make life with Crohns livable. OK, down of the pill.. eeer, soap box.
 
Kev said:
LittleChloe, I don't think there is any way to stop the spread of LDN treatment by anyone barring someone, someday putting forth a study suggesting it does more harm than good. I don't think the manufacturer of Naltrexone (or anyone who offers a generic equivalent) would be on board with that, as .. well, if a 4.5 mg dose has potential side effects, then the much higher doses that the drug is typically perscribed at must have much worse side effects. That is one of the beauties of this treatment. Naltrexone has been around for decades. It was tested AND approved at dosages MUCH higher (I think in the original tests subjects were given 150mg). And even if the makers of Naltrexone were to go under, since it is off patent protection, there are generic versions out there.
No, I think LDN is here to stay (mind you, I'm not a seer, else I would have seen Crohns coming and avoided dairy and red meat). And, I think courageous pioneers like Dr Jill Smith will keep fighting to spread the word AND usage of LDN until it becomes available worldwide. I also believe that everyone who persuades their doctor to consider it also makes inroads into the future of this treatment, hopefully saving not only themselves but other patients down the road. But, unfortunately, that methodology takes time. Here I am, 4 1/4 years later, and LDN remains a little known alternative treatment Vs perhaps (because of its relative safety, efficacy and financial costs) the first choice of treatment. Imagine, a day will come when someone is presented with a diagnosis of Crohns for the very first time, is told there is no cure, but if you take this one pill each night at bedtime your symptoms will stop AND your side effects will likely be just vivid dreams... and it costs about $1 a day. Sure would take some of the sting out of the Dx.

I guess (sort of on a bit of a down note) I'm a little perplexed that, although introduced to the world in the American Journal of Gastro-enterology in the early part of 2007, LDN hasn't made it's way to the forefront of research. I understand why the drug companies AREN'T involved.. there is no profit.. it already has been invented, patented, and gone off patent protection. But why aren't those involved (like the Crohns/Colitis Foundation or other independant researchers) exploring AND pushing for testing and acreditation? (sp?)
When someone tells me that they are raising money to find a cure/treatment for Crohns, I wonder IF they really are; OR are they merely looking to fund the marketing of another NEW drug they can reap huge profits on AND patent protect until the cows come home. Don't get me wrong... those researchers who are looking for the cause or cure for it NEED to continue their work; but something needs to be done by someone so that if you have this disease it is not a full scale battle to get prescribed an off the shelf, registered DIN, approved 4.5mg pill to make life with Crohns livable. OK, down of the pill.. eeer, soap box.
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This is what bothers me...while I would love for my dd and all other crohnies out there to have an effective treatment, I want even more for them to fund research to find out WHY people are getting ibd and the cause...prevention so that more people don't need to suffer.

I recently had my doctor push another drug even though I specifically requested Humira (for psoriasis, not crohn's). When questioned, he admitted that the success rate was a full 20% less for my disease than Humira...it is CRAZY the hold that the drug companies have on these docs!!!
 
Angie,
You are right. These drug companies really try to influence the way doctors practice even with the new laws that were put into place. Limiting the amounts of gifts they are allowed to give they still find ways to get around it. It is always about the bottom line: Money!!!!
I agree with you let them find a cure!!! but of course that does not make them any money.
 
I'm thrilled to hear Caitlin is doing well.

There are certainly docs not open to patient/family ideas but the two we have had are not in that category.

We have not tried LDN at this point but may get there. What I do not like from my admittedly superficial view is a drug people claim cures 100s of diseases. If it has that capacity, you better believe it would be studied and repackaged under another name and yes, someone would make$$.

I hope Caitlin continues to improve and that a study proves all the skeptics wrong! :) :)

Hugs,

J.
 
Hi guys

Any one look up this group "LDN Research Trust" they look to a English group trying to get trails into LDN and crohn is listed.
 
AZ, are folks saying that? That makes me wonder too...:shifty:
Are pts just FEELING better on naltrexone or actually GETTING better as in disease activity measured by biopsies/labs...(but who can go by labs as V's are not in line w/disease activity and so many on here aren't either...:ywow:)?
 
If you can't use labs, colonoscopies, biopsies and feeling better as an indication of whether a medication is working then what can you use? My daughter has gained back her weight, her bloodwork is very good, she has regular bm's, she feels good and is no longer exhausted all the time. I guess she could have just gone into remission by herself because this disease does do that, but then we would have to make that assumption about any drug. How do you ever know if a drug has helped you or whether you just got better on your own?
 
Certainly not an expert by any stretch but... I think the claims that LDN can treat so many illnesses relates to the fact that all the illnesses are auto-immune and that they all respond similarly to the LDN.
 
I love the fact that LDN has very few side effects and is considered a safe drug but I do think that the G.I.'s have a legitimate reason for not prescribing it if they haven't tried other drugs first. It isn't proven and so they could be doing harm if they put someone on this drug and they get worse knowing there was a drug that was available to them that has proven success.

I went to a meeting last night at my son's hospital because we are enrolled in "improve care now" with hospitals across the country. They track the meds everyone is on and the success they are having and the G.I.'s get access to all that information. People who have already tried other options or choose to use LDN first will be tracked and the success monitored. I think getting word out on this forum is invaluable. It offers options to people and will possibly provide the proof that it is a successful med that can truly be helpful.
 
Heres a take on it for those who get the feeling that LDN sounds too good to be true. That it must be placebo effect, or that it's all psychosomatic. My GI wasn't keen on my going on LDN, but given I was going downhill with no end in sight, and really no traditional options left, she did her research, and reluctantly agreed. When I say that, I don't want to give the wrong impression. She got her hands on the full study, not just a synopsis. She arranged a local pharmacy to compound it (all in all, just so surportive it still amazes me), she put me on it (on the QT/hush hush) and insisted I have regular scopes, blood work, and visits. She watched me like a mother hen. And it worked. She saw the improvements, via scopes, via labs, via me. I was a walking skeleton before LDN (I have a driver's license photo from that time, I looked like I was dying. In short, I was)
Now, I've got scar tissue inside, but everything else looks healthy... my disease can only be detected at the microscopic level. And I've posted the photos of my insides to demonstrate that (In my 3 year later thread). And that living skeleton? He's gone, and I look like the guy in my avatar... like he was my identical twin brother or something. So, if you think LDN is too good to be true, I know where you are coming from, but let me tell you... you are wrong. Let's hope you (or anyone else thinking along those lines) doesn't end up being dead wrong. Or, to paraphrase a TV ad, (if you can get LDN) 'Why not take the LDN 14 week challenge? True, it is a gamble, but if it pays off, WOW BABY!
 
I'm all about trying it, I wish I had before starting the three mo Humira trial.

LittleChloe, No, I agree with you, that's how it went w/V with EN, she got much better and FAST. I've just learned on this forum that labs way more often than I formerly thought, do NOT correlate with severity of disease activity. That's the case with V and I since have read many on here who state this also. Also scopes cannot reach all areas of small bowel, V's scopes are NORMAL both grossly and histologically but she has disease visible only with cap endo.
 
I'm all about figuring out what works best. I'm skeptical of "one size fits all" on anything. If everyone was telling me Humira was the miracle drug, I'd still be wanting my doc on board because I need him if there's a crisis or if it doesn't work or if I have questions.

And, to be honest, I left another forum a couple of years ago after repeatedly getting beating about the head & shoulders :lol: about the Specific Carb Diet combined with LDN being the one and only for every patient. That "crew" took it a step further that I had "caused" my child's Crohn's through what I had allowed her to eat. The LDN curing too many things skepticism I have is admittedly a lot from those days.

Okay, enough of ancient history. :ybatty: Just thought a brief explanation of where I was coming from might help it make sense. I'm not as naturally grumpy as I may seem.

Three cheers for ANYONE feeling better around here. :)

J.
 
Hey maybe you'll get to police some poo like I did yesterday and that'll dispel any grumpiness... (why isn't there a poo smiley...) :stinks:
 
I got to police it right out of Claire's undies after she had an accident while doing her homework. She hasn't done that since the days leading up to her diagnosis.

It's official. I'm grumpy. ;)

J.
 
AZMOM said:
I'm all about figuring out what works best. I'm skeptical of "one size fits all" on anything. If everyone was telling me Humira was the miracle drug, I'd still be wanting my doc on board because I need him if there's a crisis or if it doesn't work or if I have questions.

And, to be honest, I left another forum a couple of years ago after repeatedly getting beating about the head & shoulders :lol: about the Specific Carb Diet combined with LDN being the one and only for every patient. That "crew" took it a step further that I had "caused" my child's Crohn's through what I had allowed her to eat. The LDN curing too many things skepticism I have is admittedly a lot from those days.

Okay, enough of ancient history. :ybatty: Just thought a brief explanation of where I was coming from might help it make sense. I'm not as naturally grumpy as I may seem.

Three cheers for ANYONE feeling better around here. :)

J.
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TOTALLY agree!! I'd like to add that I'm skeptical of anyone spouting, "No side effects". Every drug has side effects!! Even simple aspirin. (Ladies; the ever popular birth control pill that's all over the news these days...breast cancer?) I also don't like conspiracy theories. They make me back away...doctors aren't evil greedy people who just want to make the pharmaceutical companies rich. At least ours isn't. Maybe if you're suspecting that...then you need a new GI. Look at the pioneers on here doing brave stem cell transplants...why not just give them LDN?
I agree with THREE CHEERS FOR ANYONE FEELING BETTER AROUND HERE!! :) and love you all for researching and trying to help others...but let's not use scare tactics. :)
 
Hey J,

Totally agree! Glad you left that other site! These decisions are difficult enough without having others beat you up over them or try to coerce you into doing something different! Ughh!

Also with you re having your GI on board! The LDN is very intriguing but I can't imagine doing it without Stephen's GI's support - even if it is reluctant support. As you said, if there's a problem, I'd certainly want him to be watching for it or be aware of it.

I hope Claire begins to feel better! :ghug:
 
Maybe i'm reading into things...but is everyone on here that have approached their doctors about LDN...and they 'relunctantly' let you do it...saying the doctor is reluctant all because of the mighty $$? That's where I have the problem. I agree with Julie, if it was a cure all, doctors would be behind it. (Not sure if this is a fair comparison, but prednisone is REALLY cheap and it was our old GI's first defense. And is for a lot of patients on here). I'll just reiterate...I don't like when people go the road of conspiracy. Then we could be crazy enough to say, "Pharaceutical companies are putting stuff in the air and food that is causing crohn's so they can treat it and make billions.) Sorry I'm comming off so grouchy. This kind of talk just unnerves me and makes me question everything and anything I'm doing. My son is doing great...I should be celebrating instead of worrying.
 
I'm sure there are some doctors who consider the $$ issue, however, I believe that these doctors would be the minority (maybe naive but I would hate to believe otherwise!). But, I do believe there are other reasons why GIs would be reluctant to go with LDN:

- it may be out of their comfort zone - they're familiar with the steroids, 5-ASAs, immuno-suppressants, biologics, etc. They can easily justify their prescriptions and they are 'routine'. Going outside of this comfort zone would put the onus on them to research and make a definitive decision to NOT use what they know.
- they may truly not believe that there is enough evidence to back its alleged success.
- they may accept that there's a 'possibility' that it 'may' work and agree that the drug comes with low risk, however, the greater risk is that their patient, who requires treatment will not be receiving treatment while under their care while trying a drug that they only believe 'may' have 'possibilities'.
- also, as was mentioned somewhere, while the doctor may not be motivated by $$, he may be motivated by reputation - why risk their own reputation?

I think a patient like Stephen, who is doing okay with EN, inflammation there but 'manageable' may have an easier time getting a prescription because the downside is small (i.e. he can still continue with his doctors preferred treatment while beginning LDN). However, from my perspective, I'm a bit afraid of changing what's working okay now... My interest/hope is that, if I add LDN to the EN, knowing that the EN is not working 100%, can I avoid any deterioration in Stephen's condition. Its something I want to discuss with his GI...

But, in the case of a patient who is quite sick and deteriorating and hasn't yet tried all the traditional drugs... I think this would be a harder sell for a GI.

A bit rambling but, hope it all made sense :)
 
Well said, Tess, I think the main motivator for a doc will be REP which is predicated upon RESULTS and the fear of undertreating a sick pt who may worsen while on his watch and result in a LAWSUIT is the most common issue for a doc as regards this.
Docs don't want their pts to get worse, and I don't think money is in play very much here, I truly don't and I have worked with docs and have them as personal friends and the ones who are "in Big Pharma's pocket" are rare in MY experience.

V's doc has always stressed her "undertreatment " and made clear in writing via email (to cover himself and I don't blame him a bit for this) that he thinks she should be on drugs as well as EN (she is now of course) and that he fears disease progression and eventual sx but that he shall defer to our decision.
My guess is when I raise naltrexone after d/c'ng Humira this shall be his reaction as well.
 
I agree. My experience with doctors has been extremely positive. I honestly feel that, if it weren't for my GP AND GI going above and beyond for me (and, assuming that I'm NOT blessed by extra-special attention and they treat ALL their patients in similar fashion) I'd be in a VERY different place right now. I recall the days when the only light at the end of the tunnel definitely felt like it was an on-coming train. And I was tied to those tracks.
My doctors changed that outcome for me, and they certainly didn't profit from it financially.
 
As someone who has worked in the medical field I did not see a lot of doctors being paid off in money for prescribing drugs. The things I did see were drug reps coming in and hawking their wares. Drug reps buying lunches, and sending doctors to conferences. Now last year several new laws were passed limiting what doctors can receive from drug companies but as with everything there is ways around it. Now I am not saying doctors are bad guys at all. But when someone who has been coming in to see you several times a week for a year (so now you are friendly) tells you about this great new medication his company has come out with and he would like to send you to cancun to a conference about it and you go to the conference and learn all about this medication and the research that has been done on it. Then you come back and start prescribing it and you see that it is working for some of your patients and now you are sold on this drug. So you see the doctors are not bad or evil.
 
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I can certainly see what you're saying, Kim, certainly what's been brought to their attention, especially repeatedly, by someone with whom they've built a relationship and with presentable results will influence a doctor, and not necessarily wrongly. And, this all plays into my point that LDN is out of their comfort zone.

It's not a matter of whether doctors are wrong or right for dismissing LDN, just unfortunate and frustrating. In a perfect world, they would see their patients during the day and spend their evenings researching, studying and searching for the best drugs/treatments for their patients. BUT, in our real world, to a degree, doctors do have to count on 'someone else' to introduce new, innovative drugs/treatments to them. That 'someone' is probably most often a drug company representative. (And somewhere along the way, $$ have got to be made or no one's going to do anything!) The system is a good thing as it's brought Humira, Methotrexate, Remicade, and most other drugs to patients. Not such a good system when it leaves drugs like LDN high and dry.

I think what's being done here is all that can be done and I think it's great. The more people talk about LDN trials to their GIs, the more trials that are actually done, the more published reports, etc. will eventually push LDN into GI's comfort zones. I would imagine the LDN would now be a treatment that Kev's GI is comfortable in considering and/or prescribing. This is only because of the GI's exposure to it over the years.
 
Tess,
You are absolutely right! Especially if you think about the long hours doctors put in seeing patients in the clinic and the hospital and being on call etc. You always want to read up on the latest and you have this huge stack of professional journals sitting on your desk but somehow there are never enough hours in the day to get to it. (been there, done that!) Like you said the drug rep comes in buys you a nice lunch and for ten minutes tells you about his new great drug. There has to be money behind that in order to get it accomplished. It is frustrating when it comes to a drug like LDN where there is not so much money to be made because it has become generic. If this was a perfect world then money would not be a consideration!
 
I read 'somewhere' about a company or organization that was doing research into these types of drugs (i.e. drugs off-patent which included LDN) and were possibly involved in trials, etc. This just popped into my head so I'm really very vague on the details. Do you remember reading about this on the forum at all? It might have been a good contact re trials, etc. I just don't remember at all where I saw this... when I have a chance, I'll try to scroll through the LDN forum. Does anyone else remember seeing comments re this company?
 
I think 'we' can usurp some of the drug reps 'monopoly of influence' on doctors if we go about it the right way. OK, what am I babbling about now? Picture this, you've broached the subject of LDN with your doctor AND received the "now, now, lets leave treatment up to us professionals" reproach. Or something along those lines. You hand him/her a printout of the synopsis of the Penn State study... with JUST the bullet points highlighted. OK, so your oh so busy doctor hasn't the time to do all the research he/she NEEDS to do. A one page synopsis is too much for the doc to find time for. But how about a couple of bright yellow highlited lines? Might just capture some attention. And that may be enough to tip the scales. If your doctor doesn't do the research then, well... then I think you have a physician looking for the 'plausible deniability' excuse. I MAY be wrong in my outlook on it, but I don't think so. After all, we are talking about clinical studies with extremely positive outcomes in the battle against Crohns published in respected medical journals. A doctor turns a blind eye to that AFTER it has been brought to their attention, then it is probably a case of not having the cojones to take the heat for off patent/off label prescribing. Which is neither un-ethical or illegal to boot.
 
A digress...a bit...what are the 'vivid dreams?' I myself, have a wierd one every now and then (and on no drugs), but usually can't remember them. Also...didn't I read somewhere LDN can cause insomnia? If so, that would be bad for a young kid...similar to steroids.
 
Well, where there's a will, there's a way! :dance: Found the company! Only took a few google searches!

Company is Transparency Life Sciences - http://www.transparencyls.com/

During my google travels, also found some other interesting links. Some negative (although, to be honest, some were way above my head! So I may certainly have totally misunderstood the main point of the article! :facepalm:) But, might be interesting reading for some of you smarter people! :study:

http://marginalrevolution.com/marginalrevolution/2011/03/makena-and-the-orphan-drug-act.html


http://www.sciencebasedmedicine.org/index.php/low-dose-naltrexone-bogus-or-cutting-edge-science/


http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/1306

http://curetogether.com/blog/2010/09/13/new-study-low-dose-naltrexone/#comment-1958
 
Brian'sMom said:
A digress...a bit...what are the 'vivid dreams?' I myself, have a wierd one every now and then (and on no drugs), but usually can't remember them. Also...didn't I read somewhere LDN can cause insomnia? If so, that would be bad for a young kid...similar to steroids.
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My take on a vivid dream is one that is so clear and precise that it leaves you feeling that it was real.

Dusty. :)
 
Vivid dreams can be disturbing. My older son hd this side effect from some medications he was on (at VERY small doses) and Danny had this from LDN. Danny took his LDN right before bed as instructed 2 years ago. I was told that while LDN is in your system for only a couple of hours you could feel more tired so it was best to take at night. I have since read that LDN is now also given in the AM (like Caitlyn) and the vivid dream side effect would not happen.
 
My vivid dreams were extremely detailed, and all extremely pleasant, and sadly, all too brief. (I don't know if I'm the norm, but they didn't last as long as I would have hoped). One was of a vacation... I could feel the heat of the sun, I felt the condensation AND the etching in the glass I was drinking from, and I felt the breeze against my skin. In a dream.
Yeah, they are so lifelike, so real, so rich in detail... that if they were 'frightening' dreams they could be VERY bad. I never had anything like that. All were wonderfully pleasant. It was like going on tropical vacation without having to get out of bed. Or go to the bathroom. I looked forward to mine, but like I said, that side effect didn't last NEARLY long enough. And, to throw in a reality check (since we are talking dreams) the side effect of this drug (LDN) is/are dreams. Anyone compared that to the side effects of the other drugs? I'll take dreams (even the occasional bad one) any nite of the week.
 
I agree kev. Caitlyn never had any weird dreams or insomnia. The only problem she has had is an occasional headache or some dizziness and both pass quickly. Like Kev said I would take those side effects over the possible side effects of these other drugs any day.
 
Hey Kim and all, I emailed w/The Saint today re: starting V on naltrexone in June after her f/u.
He didn't say "no" or "yes" :stinks: ; he did say, he'd tried it with pts and also other stuff (listed thalidomide, GCSF, two other things I've never heard of) and hadn't been able to achieve the results the researchers had.
So I guess that means "maybe"?
Her LF has jumped back up to over 300 so she's going to do a six-day pred course (her first) starting tomorrow.
 
imaboveitall said:
Hey Kim and all, I emailed w/The Saint today re: starting V on naltrexone in June after her f/u.
He didn't say "no" or "yes" :stinks: ; he did say, he'd tried it with pts and also other stuff (listed thalidomide, GCSF, two other things I've never heard of) and hadn't been able to achieve the results the researchers had.
So I guess that means "maybe"?
Her LF has jumped back up to over 300 so she's going to do a six-day pred course (her first) starting tomorrow.
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Julie, what is LF?
 
LF is Lectoferrin test. It is a test that "detects the presence of white blood cells in the stool, a finding that is consistent with inflammatory diarrhea." (source: http://www.nphl.org/documents/LactoferrinStoolWBCTestHinrichs-Armbrust.pdf)

Julie's/Violet's GI uses this regularly to test Violet's level of inflammation. I 'believe' it can provide similar indications re GI inflammation as the calprotectin test. Julie will be able to give you a more knowledgeable explanation.
 
Julie, I'm sorry to hear that Violet's LF test came back with elevated results :yfrown: :ymad:

I hope the pred can very quickly get it under control!! :ghug:
 
Shelley, V's doc adores this test and is doing it every two weeks now to assess Humira response.
It's taken from a stool sample, (hence my slotted spoon and thanks to YOU, now TONG use) and measures a protein released by leukocytes at the locus of inflammation. Unlike CRP or ESR, which mark for inflammation ANYwhere in the body, fecal LF is specific to gut inflammation and nowhere else. He says it is both sensitive and accurate.

Tess, it was my idea, she's never had pred and I want to see if it does anything at all as she still feels like crap and now LF is slowly climbing upward. My guess is the quad/double loading doses of Humira were enough to lower it but the maintenance doses aren't. I told The Saint this and he said we could bump the Humira dose to which I was like, "hahah, you're a funny man" and started on the naltrexone pitch. :thumright:
 
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I've never heard of GCSF (anyone care to enlighten me?) but I have heard of thalidomide. I am from an era where lots of folks heard of thalidomide. I didn't know it was available anywhere for anything anymore. I thought after the thalidomide baby fiasco, it was put away permanently. I've never heard (but what do I know) of anyone else ever mentioning it being considered for treating Crohns. I 'AM' surprised that he has 'NEVER' achieved the same results with LDN as the researchers have. He (or his patients) have the absolute worst luck with it ever recorded (statistically, his/their results should mimic the researchers +/-) OR something is inherrantly wrong. Like maybe compounded improperly, or the wrong type of Naltrexone (SR), or something. I mean, my doctor researched it, convinced a pharmacy to compound it, and that was all it took. My success wasn't a 1/million fluke, she has a handfull of other patients on it now who are doing great. I dunno. Something about the scenario he described just doesn't make sense. (the probability of one doctor having all his patients who tried it fall into the % for whom LDN doesn't work is astronomical.) Am I the only one who gets this feeling???
 
GCSF - granulocyte-colony stimulating factor. It stimulates the bone marrow to produce more white blood cells.

Dusty. :)
 
Kim, he didn't commit either way, just responded with saying he'd tried it and "couldn't achieve the same result as the study authors". So I guess that means he is willing to try it since he has before on others.

Kev, I don't know how may he's tried it on, maybe just a few? This isn't the most progressive/well educated region so my guess is the bulk of his pt population aren't the type to research and ask for it.
 
Yeah, there is that positive aspect to it that I totally overlooked. Since he has tried LDN on other patient(s), he may (should be at least willing to discuss it) prescribe it for her. If he does, then check and re-check the source pharmacy. Once you are 100% convinced it is done right, then half your struggle is over. All you'd need to do then is trial her on it for 12 weeks. I know that sounds like an eternity, and it felt like one for me when I went on it, but should it do the trick (and the odds/statistics are greatly in your favour on this), then happy days are here again. Hmmm, did I sound like some sort of used car salesman in that? LDN isn't a miracle cure, but it can make living with this damned disease... well, not just tolerable, or bearable, but honest to God fun again. You know what I mean? Like, I can take a pill at bedtime and literally forget I've got it. (Crohn's that is)
 
I'm sure I can look this up, but in the interest of laziness, do you know the correct way they must compound? Is it not something the compounding pharmacist will be familiar with?
 
My compounding pharmacist knew exactly how to do it. I forget but there is an ingredient they should not use in the capsule. Someone put it in this thread check page 1. My pharmacist does use the lactose filler but Thank G-d that has not been an issue for us. I think they mail things all over the country if you want their number. They do take insurance if your insurance will cover it. If not it is $1 per pill. Comes out to $30 per month approx which is really not that bad.
 
Ok, cool. Maybe The Saint knows too as he's had others on it. I have phys pals back home in PB who would order it for me and there's a compounding pharmacy in Boca but I really don't want to give it without The Saint being on board. I can't imagine him refusing outright, prob will just try to talk us out of it.
 
^^Julie one of the sites warns against using just any pharmacy...I would check the list of approved ones. If I remember right only a few have had their pills consistently appropriate dosages and without certain fillers. (The LDN.org website has the info)
 
Angie, thanks, I checked and the one I'm thinking of in Boca is on the list, happily. But none that are local to me here in VA. So maybe if The Saint OK's it I'll get my friends back home to get it from there and mail it to me. I can't wait to see what he says, I was encouraged by him saying he's tried it along with other "alternative" stuff. :thumleft: I'd like to start her NOW, but I feel like if we give Humira the full three mo trial as we agreed, he'll be more likely to agree to try naltrexone when we declare Humira an official fail.

V feels no better/different on the pred so far, by the way. :mad2:
 
So disappointed for you and Violet that the pred isn't showing much of an impact!:voodoo::voodoo::stinks:


A bit off topic but, can you tell me the difference between calprotectin and lectoferrin tests? When we go to Stephen's next apptmt, Apr. 10, I'd like to speak to his GI about the LDN again and, as I'd like him to continue with the EN as well, perhaps these tests would be good indicators as to whether the LDN is having an effect on him???
 
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When I started, the nearest pharmacy that the lowdosenaltrexone site listed in Canada was in Toronto. I was prepared to go that route, but there is the possibility of a missed shipment... so I was really glad AND eternally grateful my doctor convinced a local pharma to compound it. Any pharmacy equipped with a hood (Naltrexone is sold in bulk in powder form, and since it is a neurologic, it has to be done at a site with proper ventilation) SHOULD be able to compound it. Your typical drug store/pharmacy is rarely equipped like that. But if they are, then there is no reason you can't source it locally. Unless they don't put in the effort to find out how to compound it properly. Halifax is a relatively small city in an relatively small province, but we now have 2 pharmacies that do compound it (LDN). Keep in mind that Crohns isn't the only disease this drug (in special compounds) is being used for. Both pharmacies here were able to get all the info they needed to do it right.
If you go this route, there are pitfalls to avoid... like the pharmacy doesn't do their work in researching this and compounds Naltrexone SR instead of Naltrexone (SR won't work). A percentage of people are sensitive to the filler/binder used in compounding. Lactose is a common one... no problem if you aren't sensitive, big problem if you are. Some places will offer a choice of fillers.... avicel (sp?), acidophilus (even more sp???) AND a choice of the type of capsule... glycerin, cellulose, etc (I'm not a pharmacist, so anyone with more info feel free to jump in).. I'm lactose sensitive, so I've always specified none in my pills, but I've never had issue with any of the other combos of fillers and capsules. But that is just my case. (issues like that, any given patient being sensitive to common pill components/fillers/etc. CAN crop up at any pharmacy). So, if your child has displayed reaction or allergy type issues with other meds (even flares) then you might want to look into it AND your options. Be a downright shame to get approval for LDN only to have issues (including flare like issues) stemming from something as innocent looking as the filler or capsule. I believe (but don't hold me to it) there was a member who was very sensitive to acidolphilous. Like I am to lactose. You never know this till it happens.

Couple of other points... When I first researched LDN (at lowdosenaltrexone forum) they were advising folks that candida can hinder the effectiveness of LDN. And that looking in ones saliva for long strands was a good indicator IF one was plagued with overabundant candida... (which may be alleviated by acidolphilous).. Anyway, if going the LDN route, do the saliva check. And, LDN is not approved for treating Crohns, there is no 4.5 mg pill available from the manufacturer, so there is no DIN associated with it.. which means I know of no insurance company/plan that will cover the cost of meds with no official DIN.
 
Kev, thanks, so if she needs 4.5 what does one do for ins approval? It's cheap enough though so I can just pay if I have to. Please expound...?
As far as fillers, V eats any and everything and has zero allergies/sensitivities so as long as the filler doesn't screw up the naltrexone she'll be fine.
 
Tess, I think calprotectin is similar, but The Saint has always used lactoferrin.
It's all he's using to assess the Humira response. He puts a crapload of faith in it. He always does a bunch of labs (6-8 vials of blood) at every f/u but in between he does LF a lot.
Thanks for stabbing for me :kiss:
 
Thanks Julie, from what I read, it does seem that the two tests give similar indications... wonder if one is more common in Canada??? I think I've read of other Canadian parents mentioning calprotectin??? Not a big deal, I'll just speak with Stephen's GI about it. :)

Figured you were 'stabbing' at the thought of the pred not showing results quickly!:tongue:
 
Our insurance covers ldn for Chloe. When our GI let us have it he warned that it may not be covered but I was grateful to find out they did. Maybe you could call them and ask or call the pharmacy you're going to use and ask them if it's usually covered. I would have paid for it out of pocket also but it is nice to have a little help.
 
LittleC, heck yeah, I hope they shall cover. But it's such a blessing that if we do have to pay it is cheap. Can you imagine if it was Humira cost? :eek2:

Tess, do ask, it's so easy to just send a specimen and get a result a few hours later that is accurate to what's going on in there. Plus the Poo Policing Pleasure is a Perk :smile:
 
This is embarrassing to talk about, BUT... on the basis that it might help someone out who needs to collect stool samples over a protracted period, let me tell you a little (disgusting) story.

Pre-diagnosis, doctors... clutching at straws maybe.. or just being thorough.. wanted me to do a total stool collection for a week. Essentially, I went to the lab, they gave me a large, white, plastic pail, with an air tight lid, and the instructions to put all of my... output??? .. into it.. for a week. Problem was, no one was willing to discuss how I was supposed to 'complete' the task. My solution? I built myself an industrial sized 'potty' chair... with a difference. First, I got an even larger plastic bucket, large enough to support my weight AND a toilet seat, I lined that with a disposable garbage bag AND a screen that I fashioned out of surplus window screen (I'd replaced the screen in the patio doors but, in true Scots-Canadian frugality, hadn't thrown out the original screen).
And, voila. A potty for adults that allowed me to catch my output without ever having to touch it... with tongs, gloves, HAZ-MAT suit, etc.. The screen would catch solids, I could remove the screen and dump contents in the pail, and the liquids were easy to dispose of in toilet, and then toss the garbage bag liner. Hose everything off, reassemble and ready for the next go.. (Ohhh, there's a piss poor choice of words). If it can be scaled up to fit a man my size, I'm sure it can be scaled down to fit children.
 
This is funny how the LDN conversation changed so much! I was told (for Danny's 72 hour test) that liquid D would need to be collected too ... so collanders, screens and tongs would not help :)
 
OK this is going to end up being re-named the Poo Fetishists Thread if we don't stop :poo:

Back on track...I am excited about my new medication plan and that V's doc has exp with naltrexone. (yes I still love poo)
Kim, how is Caitlyn coming now after a while on it? What changes have you seen?
 
OK from The Saint to add NALTREXONE if this pred course isn't enough!
30mg pred for two weeks, add naltrexone then wean pred.
Thank God...:dance:
 
Way to go!!!:thumright: :thumright: But, I hope Violet doesn't have to wait two weeks to be feeling better! Hope tomorrow is already a better day for her! :rosette1:
 
LittleC, The Saint is the GI. He truly is one, the more I read on these forums the more I realize that. :wink:
The Guru is the bigdog rheumatologist/immunologist she saw.
 
Kim, how is Caitlyn??!

...and for the rest of you...what is wrong with a good old hat? I will never look at my kitchen utensils the same lol.
 
Hi All,
Sorry I haven't been on as much lately. life has gotten busy. Fingers still crossed tight Caitlyn is doing well. In fact she is complaining of consiptation for the first time ever! She has had some occasional joint aches and occasional headaches but otherwise doing Great! On our way to Disney next week. To All Have a great Easter or Passover!
 
That's great news. I'm assuming Disney World (Florida) Vs Disney Land (Ca), right? Went there years ago, had a great time there. And if you can squeeze in Universal or Canaveral, all the better. Just be sure to pack a spare pair of legs... I used to hike 10 - 20k per day and despite that, my legs were shot at the end of each day. Absolute best time ever!!!
 
Kev,
Disney World Florida you were right. We are also going to go to the new Legoland they opened. We have been to the one in California when the kids were little so we are really looking forward to seeing this new park.
 
I've got photos of me and my youngest in Disneys African Safari... sitting in the last seat with a rhino basically standing beside the door within petting distance. He/she (how one tells the difference between a male/female rhino is only important to another rhino) just meandered over, the driver stopped the truck, the rhino slowly checked us all out up close and personal, then just casually meandered on his/her way. We just pretty close to some giraffes, but they were skittish, and when we got too close for comfort, gamboled off.

I do so hope the LDN is kicking in. If, as I suspect, it is, then you are going to be really amazed at how much better Caitlyn is going to feel/act. Just be sure you've got your supply and a backup stash with you. Something seems to always go missing while travelling, esp. with children.
 
Hi all we are here at Disney animal kingdom having a great time. I definitely recommend getting the guest assistance card.
 
No no Epcot for us my husband does not like Epcot. Today we went to the new legoland park. It was not bad. Nice for kids under twelve. They also had a guest assistance card which was very helpful. It was a bit of a drive from the Disney area almost an hour. Tomorrow we are going to Hollywood studios.
 
Kim, I'm so happy for you guys that Naltrexone is your success med! That's great. I wish I was in Florida!! I'll bet its so nice to get away.
 
Kim, I'm so happy you're having a great time !
I just sent you a PM thinking you weren't here in Florida yet ~ How long are you all staying? '
We will be going to Epcot this weekend :) My husband loves it ! LOL
I'm not the biggest fan tho...
Enjoy ! :)
 
Hi All,
I wanted to revive this thread for some of the newbies here. Several people have PM'ed me to ask about LDN. As many of you know our story already I will give a little summary here for the newbies:
Caitlyn has been a really rough case of Crohn's Disease. She was diagnosed 4 days prior to her 11th birthday. She was put on prednisone and Imuran. She almost immediately had a severe allergic reaction to the Imuran. She got a super high fever and broke out in blisters. We then tried remicade which helped somewhat but not great. She started methotrexate but she ended up with surgery a year later. The methotrexate worked decently for 2 years but towards the end of the second year stopped working. (that was this past August). The first half of this school year Caitlyn almost missed the whole year. We tried Enteral Nutrition but Caitlyn did not really cooperate. In December we decided to try remicade again but Caitlyn ended up having a severe allergic reaction to it. The doctor kept pushing us to try cimzia but I really did not want to. I have really been not happy about using any of these meds with their possible side effects and kept searching for something else. Then someone on this forum recommended LDN. We tried it starting in January. (After a great deal of arguing with our doctor). Thank G-d it has been our miracle. I have gotten my daughter back. She is happy, full of energy, back at school and even participating in PE with out any problems. Her labs have also been coming back normal. So if anyone wants to know what I think of LDN? I say definitely give it a try! I don't care if there are not a lot of studies on it because it is a generic medication so the drug companies don't want to fund studies. It is a drug that has been around a long time and has a good safety record. We are extremely happy with it!
 
Thanks for sharing your story. I am so sorry your sweet girl had such a rough go of it earlier on. I am so happy she is doing well now. :). LDN sounds very promising. Do you know if you are enrolled in Improve Care Now? My son is and it's a nation wide program where they track treatment and outcomes. It would be great for other G.I.'s to know how great this is has been for Caitlyn.
 
Awesome news! Thanks to you and your daughter for being so brave and blazing the trail for others. Hopefully as more and more people get access to the treatment and good results become known more GI's will accept it.

Wishing you continued success!
 
Wow that sounds fab. So glad she is doing well- it must be nice. My son isn't doing too great just now.
Just out of interest - do you know if LDN is any good for dealing with fistula's? I would like to give it a try if the Aza doesn't work but no point if it won't deal with the fistula issues.
 
Kim,

It's so great to hear that Caitlyn is doing so well!!! I do remember all those weeks when you and Caitlyn struggled so much with her symptoms! Am so glad things have turned around!! I hope it continues for a long, long, long time! :thumleft::thumleft:

Just out of curiosity, what does her GI say about her improvement?

:)
 
Kim, thanks and so happy to hear it!
Yes, what does the doc say?
Naltrexone shall be V's next step if and when. I know she cannot stay on pred forever.
 
Hi Kim,

I have been following your posts recently, and I am so happy that Caitlyn is doing so well
on the LDN. My daughter has been on transdermal LDN now for over 3 weeks and doing
well. She is still on 6mg of Entocort, and we were advised to wean slowly while increasing
LDN. Liv had some side-effects on day 2 and we cut the dose to 1.5mg and are now up
3mg. We will be weaning Entocort to 3mg in approx 2 more weeks if things remain the
same. It is so encouraging to hear positive outcomes!!! Keep us updated! Kim
 
That's wonderful that Caitlyn is doing so well! Yay!

Have they done fecal calprotectin, fecal lactoferrin, or a colonoscopy on her since she started on the LDN? I ask because I'm curious if her [wiki]intestinal mucosa[/wiki] is completely healed as well.
 

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