Humira vs LDN: A GI vs a naturopath

[acemagic]

Hey everyone,

I'm faced with a really tough decision and wanted to call on you guys for some help to see what I should do. Firstly, a very brief history:

Diagnosed with Crohn's at 17 years of age in 1998
1998: Went on prednisone briefly
1999: Went on 6-MP/Imuran which gave me terrible bruising
2002: 1st resection of my terminal ileum (emergency)
2003: Went on methotrexate, which made me violently nauseus
2004: Went on Remicade which worked great for 1 year
2006: 2nd resection (elective)
2007-2011: No medications, just dealt with symptoms
2012: 3rd resection (elective) due to stricture, active disease and frequent blockages.

Since my surgery in May, I have vastly changed my diet. Some of you may have read my postings in the general forum on the "Paleo" diet. I'm sticking with it and feeling good, but my surgeon suggested I follow up with my GI.

Last week, I saw my naturopath and briefly brought up "Low Dose Naltrexone". She told me she has had some patients on it that did ok, but most doctors in the city won't prescribe it because it's not approved for Crohn's.

Today, I saw my GI.

When I mentioned LDN, he gave me a resounding "NO". He basically shot down the role of LDN AND Diet in Crohn's disease and claims that no proof exists in clinical trials that has proven that they work. He equated LDN to morphine, in that it will mask the symptoms, but it won't halt progression of the disease. He emphasized that he cares about halting progression and that if he prescribed me something like LDN, it would just mask the symptoms and he wouldn't be doing his job. He also mentioned that after clinical LDN trails were performed, the Health Region went to the people who ran the tests and asked to see the data and were completely turned away as if they had something to hide. He wants to put me on Humira immediately and I'm now faced with the option of ignoring his advice completely and potentially letting my disease get worse (if he's right) or going on Humira...which to be honest, I don't know if I can give myself an injection every 2 weeks, not to mention the side effects like increase in cancer rates, hair falling out, etc etc.

I'm petrified and don't know what to do. I could get a referral from my Naturopath to get the LDN from another doctor if I choose to do so.

What are your thoughts? Has anyone had LONG TERM success on LDN supported by colonoscopy results that show that the progression of the disease has halted? I'm not just looking for "Im feeling better on LDN", but actual results based testimonials.

Similarily, I'm looking for long term Humira success stories, with minimal side effects if possible. I'm really bad at making decisions on my own and I need to ensure I'm completely equipped with all the information before I settle on something.

Thanks for your help!

-Adam

 

[helena101]

I can't help you about Humira or LDN as I haven't been on either. My doctor also advised biologics (remicade in my case) and I decided to find another doctor -probably the only one who DOES believe that diet plays a role. I've only needed to take asacol this past year, and am now trying to come off it.
What I suggest you do if you decide to try the LDN is have frequent faecal Calprotectin tests, which is completely non-invasive, and will let you know what the level of gut inflammation is, whether its going up or down or staying more or less constant. It can be difficult to rely on symptoms alone to gauge if a treatment is working or not, and particularly if you are going against your doctor's orders you will want to be sure you are not doing yourself harm....

 

[David]

That's a tough situation you're in

First off, the second study conducted on LDN showed that it does much more than mask symptoms. Not only does it halt disease progression, but it actually promotes mucosal healing which is VERY important.

Low Dose Naltrexone Crohn's Study One
Low Dose Naltrexone Crohn's Study Two

The whole, "Wouldn't provide their data like they have something to hide" thing sounds pretty silly to me. And the whole, "Diet plays no role" is ridiculous considering enteral nutrition has about the same remission induction rates as Prednisone. If utilizing enteral nutrition isn't a change in diet, then I don't know what is.

With that said, that doesn't mean LDN is the correct answer for you. You've had three resections at this point. It is incredibly important that further resection be avoided in the future as the more intestine you lose, the harder time you're going to have in the future.

I know anyone on anti-tnf medications were excluded from the second LDN study, but I believe people on Humira were allowed in the first study. So taking both MAY be possible but I would do MUCH more research on that if that's of interest to you.

After your first resection, did you have any symptoms or active disease prior to your initiation of Remicade? I'm trying to understand why you had to have that second resection. Did Remicade REALLY work well? Was whatever resulted in that second resection already present when you began Remicade? Or was damage done while you were on the Remicade? Did they test you for antibodies to Remicade at any point?

I suggest you read this a few times as it is very pertinent for you and ask questions on anything you don't understand. I have another one like it coming later today I'll link you to when done.

 

[acemagic]

Thank you, to both of you.

David, I will take a very close look at what you posted and will get back to you. I'm leaning towards LDN right now, but going completely against my doctors orders is an unnerving thing.

Thank you again.

-Adam

 

[CorvusCorax]

Hello acemagic..........I hear your plea.....I too am in the same 'dilemna'. I have had Crohns for 2 1/2 years now and have had my colon removed in it's entirety. Had a j'pouch created and have had a few bouts of pouchitis. I have read numerous positive studies on the effects that LDN has on Crohns' and I do not want to take Humira as for the deadly side effects that it can cause to an individual.

I bring in the write up studies on LDN and it's very positive effects it has on active Crohns to my GI and he just ignores it and says it won't help my case. All he insists is Humira....I will be the one to decide if I go on Humira - as you and I are the only ones that have to deal with the side effects that Humira can give you.

Stand your ground, do your research and as you state - go to a doctor who is a little more open minded and is willing to listen to YOU and prescribe LDN for you.

It is ULTIMATELY your decision - your GI and docs are only there for guidance.

All the best in your endeavor and be strong.

Melodie.

 

[acemagic]

Thanks Melodie. I'm really glad to hear I'm not alone in this. I think I'm going to go the LDN route and just ignore what my doctor has to say. if I'm wrong, then I'm wrong and I'll need another resection, but I can't just ignore the information I keep reading about.

-Adam

 

[acemagic]

That's a tough situation you're in

First off, the second study conducted on LDN showed that it does much more than mask symptoms. Not only does it halt disease progression, but it actually promotes mucosal healing which is VERY important.

Low Dose Naltrexone Crohn's Study One
Low Dose Naltrexone Crohn's Study Two

The whole, "Wouldn't provide their data like they have something to hide" thing sounds pretty silly to me. And the whole, "Diet plays no role" is ridiculous considering enteral nutrition has about the same remission induction rates as Prednisone. If utilizing enteral nutrition isn't a change in diet, then I don't know what is.

With that said, that doesn't mean LDN is the correct answer for you. You've had three resections at this point. It is incredibly important that further resection be avoided in the future as the more intestine you lose, the harder time you're going to have in the future.

I know anyone on anti-tnf medications were excluded from the second LDN study, but I believe people on Humira were allowed in the first study. So taking both MAY be possible but I would do MUCH more research on that if that's of interest to you.

After your first resection, did you have any symptoms or active disease prior to your initiation of Remicade? I'm trying to understand why you had to have that second resection. Did Remicade REALLY work well? Was whatever resulted in that second resection already present when you began Remicade? Or was damage done while you were on the Remicade? Did they test you for antibodies to Remicade at any point?

I suggest you read this a few times as it is very pertinent for you and ask questions on anything you don't understand. I have another one like it coming later today I'll link you to when done.

David,

Big LOL's. The "Switching Anti-TNF Agents" article you posted was actually WRITTEN by my GI.

 

[David]

I think I'm going to go the LDN route and just ignore what my doctor has to say. if I'm wrong, then I'm wrong and I'll need another resection, but I can't just ignore the information I keep reading about.

That's definitely the wrong mindset and approach. If that's the way you're going to handle your condition, then you should go on the Humira and do everything your doctor says. Considering he wrote the book (lol by the way) on when to switch anti-tnf meds, he obviously knows his stuff.

If you're going to go on LDN, you need to be extremely thorough. As helena said, get your fecal calprotectin tested regularly but in addition to that, your fecal lactoferrin, ESR, CRP, CBC, and everything else they're willing to test. Find your baseline before you even go on the LDN and if you are non responsive based upon all those results, then head in for Humira LONG BEFORE you get to the point of resection.

Please note I am saying this in a supportive manner and tone, I'm simply concerned about you

 

[Kev]

I can't help you with your decision, but I can offer the following. I've been on LDN a long time (next month will be 5 years). As for it just masking symptoms and not promoting any healing... I don't know where your doctor 'got' his info, but I've had regular bloodwork and scopes (I even posted photos of some of my scopes... I did it to show the extensive scar tissue I had from my disease.. a rare sort of glass half empty focus I had at the time.. but a sharp eyed poster noted something I failed to mention... all the nice, pink, healthy tissue around those scars. Considering that the entire area in those photos had been completely inflamed... well, those photos are worth 1000 words).
LDN has stopped the progression of my disease, and has promoted mucosal healing, and I have the photos to back up those claims. I would also suggest that, if done properly, treating Crohns with LDN is as effective as any other form of treatment that is known. I would also rank its comparative safety versus the other options as above any reproach.
But it sounds like your GI is steadfastly set against LDN. I'm glad my GI was a bit more open-minded. The results she saw in me... both from lab results and the colonoscopies she herself performed... was so encouraging she has put another 5 (at last count, it may be even higher now) patients on it... then prepared and presented a report to her colleagues on the safety and efficacy of treating Crohns with LDN. Mind you, not all of her patients are treated with LDN. Maybe 1:300. LDN isn't the solution for everyone. I fear in your case that attempting LDN will definitely cost you your relationship with your doctor. It shouldn't come down to that. I personally find the whole "it's my way or the highway" approach to treating patients as pretty archaic. I have seen the "best' doctors in the Atlantic area. Unfortunately, I have also witnessed for myself that, despite being the "best", they weren't infallible. They both could AND unfortunately did make mistakes.
I would go so far (and I think this is a fair statement, based on the story you have told) as to say your doctor has made mistakes... about LDN, whether it works or not, and the no proof exists. I'm living proof... which is to say, thanks to LDN, I'm really living, okay?

 

[acemagic]

Hey Kev,

Thanks so much for the info. You're the biggest proponents of LDN on this website, so I'm familiar with most of your posts supporting LDN. Your story was a big factor in bringing it up to my doc in the first place.

I emailed my doc about 2 hours ago giving him my final decision. He replied, saying he doesn't support it, but he will accept that it's my decision and we'll just have to see what happens. Now the only trouble is, he still won't prescribe it to me, so I need to find a doctor who will. I seem to remember reading a place that I can buy it online, but I can't find it anymore for the life of me. Kev, are you able to point me in the right direction? Thanks!

-Adam

 

[rxgirl]

I will start out by saying I sympathize with the difficult decisions. I was diagnosed with Crohn's fairly recently. My GI immediately prescribed Cimzia and LDN for my arthritis/vasculitis issues. I am a pharmacist, but specialize in psychiatry, so all of these meds are not my speciality. However, I read all the biologic and LDN studies I could find prior to starting the combination.

After discussing the LDN trials further with my GI doctor, she explained that biologics were often excluded from the LDN trials because it would be harder to determine if the LDN was actually working.

I decided that I did not feel comfortable with LDN alone at this time, but that is my personal decision. I agree that there is some risk with the biologics, but I also remind myself that people take them for psoriasis and it is not a life threatening disease.

Best wishes in making your decision. I know it is not an easy path.

 

[Gianni]

He basically shot down the role of LDN AND Diet in Crohn's disease and claims that no proof exists in clinical trials that has proven that they work. He equated LDN to morphine, in that it will mask the symptoms, but it won't halt progression of the disease. He emphasized that he cares about halting progression and that if he prescribed me something like LDN, it would just mask the symptoms and he wouldn't be doing his job.

This is exactly why I refuse to see mainstream GI's anymore. How does Humira halt the progression of the disease? It does exactly what he is saying LDN does... it masks the symptoms. The inflammation isn't the disease and that is all Humira takes care of. To say Humira halts the progression of the disease is like saying tylenol halts the progression of a migrane.

While I was on Humira, I did feel much better, gut wise, but i was constantly getting ill. I had pneumonia 3 times in one year! I ultimately decided to discontinue the drug and control my crohn's through diet (raw vegan). 1 year later, haven't even caught a cold and my crohn's disease reversed. That is a halt in progression, not the temporal abuse of the immune system through suppression.

Others find Humira to be wildy successful so it just depends on the individual.

LDN seems to have great results, and i would pick LDN over Humira everyday of the week and twice on Sundays, but then again that's just me.

Hope this helps

Gianni

 

[acemagic]

That's definitely the wrong mindset and approach. If that's the way you're going to handle your condition, then you should go on the Humira and do everything your doctor says. Considering he wrote the book (lol by the way) on when to switch anti-tnf meds, he obviously knows his stuff.

If you're going to go on LDN, you need to be extremely thorough. As helena said, get your fecal calprotectin tested regularly but in addition to that, your fecal lactoferrin, ESR, CRP, CBC, and everything else they're willing to test. Find your baseline before you even go on the LDN and if you are non responsive based upon all those results, then head in for Humira LONG BEFORE you get to the point of resection.

Please note I am saying this in a supportive manner and tone, I'm simply concerned about you

I should definitely clarify. I don't intend to "ignore" my doctor. I've already had a conversation with him via email today that I personally would prefer to try the LDN approach for the Humira approach. We're going to scope me every 6 months to ensure I'm in good shape. We butted heads this morning, but are still on the same team.

 

[Kev]

I can't help with online sources of LDN... and my 20+ year prior career in IT makes me very dubious of anything sourced online. A website can look legit to the Nth degree, but it could be the front for someone who cooks up concoctions in their basement, or imported from god knows where.. and made from god knows what.

I did have the name of a doctor (US) who would... meet with potential patients by phone..then prescribe. I no longer have that info, but I obtained it from the lowdosenaltrexone website. I didn't know then, and still don't, whether a US doctor could/would prescribe to a Canadian citizen, or whether the prescription would be valid, or even if I could get the drugs shipped up here to Canada thru Customs. There may be some members on here who are from your neck of the woods who knows of a doctor who will prescribe it; or you may be able to find that info at the lowdosenaltrexone.org website. Way back when I went looking for info, there was only one Canadain drugstore and no one had a list of Canadian doctors who would prescribe it. But that was long ago.
Hey, I've got two pharmacies right here in Halifax who are compounding LDN regularly. A lot of things have changed, and people arent' quite so in the dark about the whole LDN thing.

 

[Sandyw]

I too have Crohn's disease and was diagnosed and went through an emergency resection of my entire colon in 2009. It was a struggle, but I have come through it quite well. Now that I know what I can and cannot eat, can and cannot drink and know when dehydration is on top of me, most days are good.

My quandry at this time is that I have been on Humira since April 2011 and this medication really scares me. The tradeoff is tremendous.

I have been researching LDN and have made an inquiry with my Dr. I respect his knowledge and the time he has taken to care for me, but I do want to look into a possible switch. LDN appears to overall be much less offensive to the body. And I do believe that ultimately it is my decision to make, but I really like my doctor and would like to work with him, so I am hoping he is willing to research and will come to the same conclusions.

I have had strep throat and the flu once in my lifetime of almost 45 years and have now had 3 sinus infections over the past 9 months.

From what I have read about LDN it looks like rather than supress the immune system, that it makes it behave. Please correct me if that is not accurate.

I really liked Kev's story as it gives me hope that this might truly be a good option that will support a healthy vital and longer life.