LDN and me, a personal diary

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Here's the down n dirty on me. Pain levels are still low, almost none existent.
But, my BM scale is way down, 3's N 4's the last 4 days now. Energy levels are way down.. memory is so so, and my mental faculties (sp) are muddled again. Last nite, just to add insult to injury, my hot n cold spells returned. My next GI appointment is a month away, hoping things will turn around before that, otherwise will be difficult to convince doc to refill my 'script'.
So, despite this unfathomable set-back, I'm trying to remain optimistic. But, a very bad realization came over me yesterday. I made an assumption, and it was a big assumption. I assumed that the 11% who failed to respond to LDN treatment did so from the get go. But what if some/all of them started off like me, then in mid-course, it all simply stopped working? That's a worry that is hard to compartmentalize. I try fighting that thought with a hope the setback is due to either a flare of my IBD, or a secondary infection of some kind that is putting a strain on my immune systems capacity. The fact that I am not displaying any symptoms of this imagined second ailment does not bode well. And if it is a flare of my IBD, what does it say for LDN?
 
I doubt very much that it would start working and then stop. The mechanism just would not likely work that way. I think it is more likely that it is just more of the roller coaster effect, or your compounder is not doing a good job and your LDN is varying in potency.

Are you using one of the approved compounder's listed on the LDN site? Have you just started a new bottle of LDN? I would eliminate that as a possible cause before anything else is considered. Given that they have the list, indicates to me that it may be fairly common for people to get poor quality LDN.
This is one common problem with compounded drugs.

I hope your symptoms start improving again soon.

Dan Bergman
 
Hey Dan... Thanks for the words of encouragement. I really don't know what is going on. Yesterday, I hit a 2 on my BM scale (right back where I started), then last nite at bedtime my pain levels shot up again. This AM, I got up out of bed feeling tired, drained, miserable (again, just like before starting on LDN)
and no head rush with my 1st smoke. But, on a positive note, my 1st trip to the bathroom netted me a 3 (not great, but it is the 1st sign of any sort of upward trend in the last 4 days).. I've tossed around a lot of ideas in my head, trying desparately to figure out what da f#$% was going on here.
Like, was this all psychosomatic... or were the pills stored at an incorrect temp., or did the pills have varying degrees of Naltrexone in them, you name it AND I've probably considered it. As for the pills, same old same old. Haven't started a new bottle, prescription, etc., and although they are not listed on the LDN website, I intrinsically (sp?) trust that my pills were compounded properly (course that is just another big assumption on my part).. When all is said and done, I'm hoping that this is just a bump in the road, that my IBD is fighting back, flaring, but that with LDN treatment my body, my immune system, WILL eventually win out. God, hope I'm right...
 
Maybe you just got some other minor illness and your body focused elsewhere and let up on your crohns healing. Give it more time because it sounds like you don't have many other options before remicade/humira and you dislike those about as much as I dislike prednisone it sounds like. Even if it is a bumpy ride for a while, I'd rather see improvement over time and have a few lows so long as in general I keep moving forward from them. Good luck!
 
Here's a thought... Anyone any idea on the shelf life of pills compounded from pure, bulk Naltrexone powder? Could it be 90 days, 45 days, maybe 30 days?
 
That would be one to email the makers about or ask your pharmacist, it is quite possible your pills expired or something. If its rapidly declining like this and you feel it isnt working the other possibility is that it really isnt working because it expired or something. Hopefully you get to the bottom of this, but if you can afford it ordering a new batch might be an interesting test.
 
Have you been stressed? I'm thinking you shouldn't worry, it seems Crohn's has always gone in cycles for me. A few days okay, a few days bad. We know LDN is slow however it goes. The results from that study seemed to suggest it to me. 60% got remission, 89% saw at least some improvement. I would think it was the 40% which had it worse and the 60% not too bad.

Besides even your scale is no match for medical examination. You may be improving steadily and if you have a test the next time you go in they may show that.
 
Kev, I agree with AbstractDonut!!

"Besides even your scale is no match for medical examination. You may be improving steadily and if you have a test the next time you go in they may show that."

How true this is!!

Take care and try to relax a bit my friend. :)

Hugs~Nancy
 
Well, there is/was no stress going on.. in fact, before the reversal, I was almost euphoric. Bm scale aside, my other symptomology has reverted (almost all of it) to where I was pre LDN. (pain levels are still lower, but seem to be creeping up a little each day.) I have no explanation for my situation.
 
My pills say to discard after one year. So I am guessing that the shelf life is a little longer than that.

I would consider getting a refill at one of the approved compounders, just so you can rule out a varying dosage. Or, maybe ask the head pharmacist if he could personally supervise the compounding. If you call Skip at Skips Pharmacy, maybe he could shed some light on your reaction. He is an MD. Maybe there is some trick to doing this correctly. From what I have heard, he is a very good guy.

It just seems very odd that you could improve so nicely and then regress. I would expect it would work and keep working, or it would not work from the beginning. Especially since you no longer get the head rush. That seems like you are not getting the medication.

I really hope you can get to the bottom of this.

Dan Bergman
 
Thanks for the info, Dan. Shelf life of a year, eh? Sort of blows my theory. I have a GI appt in 3 weeks. Think I'll stand pat till I have that consult, perhaps get a new prescription/fresh refill... see what happens, what the GI thinks too.
 
I'm almost too scared to say this, (KNOCK WOOD) but it seems to be turning around. My symptoms have eased off, my pain levels receded, energy levels improved, and my BM scale has inched back up to 5. Keeping fingers crossed.
 
OK, just finished week 10. Results? mixed... overall, my pain levels are down, my energy levels are up.. but my BM scale is a toss-up.. currently at a 5, and there are definite indications that I do have some fairly active inflamation in the colon. On top of that, some of my side issues associated with my IBD are currently active... fingertips/fingernails are cracked and extremely sensitive, and that damned itch in my legs at night is back. That's pretty much my current/recent status. I have developed some nasty hemmerhoids, which I treated with some left over 3 yr old Proctosydal sup.,
but altho it helped somewhat, they're still a proverbial pain in the... As I was saying, that's my current status. I have no idea (at the moment) why the amazing results I'd seen up to the 5 - 6th week of taking LDN seemed to regress/stop. Don't get me wrong,.. Considering my condition 10 weeks ago, where I am today is far N away much better in all aspects. It's just that having been nearly to the top of my BM scale, with little/no symptoms, it's hard to accept that it rolled back on me. does that make any sense?
 
Had it yesterday with a doc who is filling in/fitting me in, while mine is on leave. Never met this GI before, just glad that I'm not a permanent patient. This doc believes it's ill advised to try to treat IBD, far better to just supress the symptoms. Can you believe this? Obviously no one close has IBD. Total lack of empathy, cut and dried.. 'there's no hope beating this disease, so you might as well face it, accept it, lay down and just get those symptoms out of sight' Sort of like the old joke (really tasteless, you have been warned).. about the doc who tells patient "I've good news, and bad news.. The bad news is you've got AIDs, the good news is that you've got Alzheimers too, so you can just go home and forget about it!" Anyway, he reluctantly agreed to refill my LDN for 2 more months, but since his self described philosophy is that there really isn't any practical, realistic way to beat this thing, pursuing LDN is a waste of my efforts and his valuable time.

God, spare me from these pantywaist egotists who think they're Gods gift to humanity. Oh, and when I told him about the resulting complications due to my sudden increased BM condition causing hemmerhoids, and asked for a prescription strength hemmorhoid suppository, he turned me down flat. According to him, OTC treatments were just as effective.. Yah, right!!

So what it boils down to is this temp GI is nothing but a big pain in the ass!
 
Thank you for the update.

Like I have said before, most doctors are not too innovative when it comes to treating disease. It just is not in their best interest. But our interest in the matter is quite different as we live with the disease.

Consider yourself lucky to have such a good regular doctor. That is rare in itself. Most of the ones I have run into are like the one you just described.

I hope with more time you will get back to the good results initially experienced. They always say six months to a year to allow it to work to its full potential. It is hard to wait that long.

One possibility is that initially the LDN quickly healed your intestinal tract to a degree and the BM improved as a direct result. As time goes by the LDN is regulating your immune system and it starts attacking the bacteria in your intestinal tract. My experience is whenever you kill off bacteria, it gives you the big D. Just like having the flu. Your body has to cast off the dead bacteria, virus, or parasites as quickly as possible. Most any treatment that kills these pathogens produces the same reaction.

Of course, it is just one possibility. But if it is correct, it will pass as soon as most of the offending pathogens are gone. I really hope this is the reason, but if it is not, you will know that also with time.

Dan
 
yeah what D Bergy is referring to is called a herxheimer reaction. it is a very common reaction especially with people that are killing lyme disease bacteria. it is also common when you have mass dieoff of bacteria elsewhere in the body if you introduce alot of medicine all at once. good example would be getting an upset stomach while on flagyl or levaquin or penicillin. there is a good chance it isn't the medicine itself that is making your BMs terrible or making you nauseas, headache, etc. but the killing the bacteria could be the reason.

at any rate, LDN could very well be ramping your immune system up to a point where things are starting to get killed on a larger scale. if your BM function improves and stays there then you could probably assume the herx is what is happening.
 
You might consider some probiotics being thrown in the mixture to help regulate bacterial levels a bit as well. If you are in fact clearing a lot of bad bacteria right now, its an optimal time to throw some good ones in there. I know ones like vsl are really good...but expensive and probably overkill for your needs if your body is already clearing the bad stuff out. Hopefully it really is just your body starting to get itself into check and you will return to (and surpass) your previous good standing in short order!
 
Kev said:
This doc believes it's ill advised to try to treat IBD, far better to just supress the symptoms. Can you believe this?
Click to expand...

Not what you want to hear, is it? But, as much as I detest myself for writing this...... Throughout my experience, all I've felt with any drug that has 'worked' (i.e. Pred & Infliximab) is that all they've done is suppress the symptoms and little else. Hasn't touched the inflammation or ulceration. I'm so sorry to say, but I think that's all the drugs on the 'market' are doing at this stage. Let's hope the next wave of drugs fare better.

Am I way off the mark with that? Kick me if I am.

I suppose though, that wouldn't explain why some people go into remission with some drugs. I just don't know. Maybe it's just my experience. Maybe I've got a rant head on.......
 
The only drug I have ever taken for Crohn's is LDN. I have taken various natural TNF inhibitors that counter inflammation. I have no symptoms or bowel problems so far.

I do agree that most all of the official Crohn's drugs suppress symptoms, but LDN is different in that it attempts to correct the faulty immune response. If you can trick the body into working properly there is no need to suppress symptoms. This is not a cure by my standard as you still have to rely on a drug, but if it works, it is a far better way to correct the problem than immune system suppression.

Prednisone as a steroid should prevent inflammation. But it still is just suppressing a symptom. A useful quality for sure, but the immune suppressants seem to only work for a certain amount of time and the body adapts to them.

I cannot think of one good reason why it would not be preferable to treat the disease instead of symptoms. I do not think the doctor can come up with one either. He may not believe it is possible, and he is correct if you are his patient, and follow his advice.

Dan
 
Yeah, that's one of the things I like about the LDN approach. And, altho pred does suppress the immune system as well, there's a common held belief that a dose of pred (since you can't stay on it long term) will 'shock' the system so it reverts to the correct(ed) response. My very first 'outbreak' , which nobody was able to diagnose, I went on very potent pred enemas for 45 days... that shocked/knocked my system right for nearly a decade.. So, given that after the steroids wore off, my system remained in a 'corrected' state for a considerable length of time, obviously not due to the suppression of the immune system. Come to think of it, I think (but how much do I know) that any immuno suppression regimen carries a risk of 'failure'.. What do I mean? Well, you got IBD, take an immuno suppressor, catch some other non related 'bug', and what does your immune system do? Kick in (or at least try to) to fight off this latest threat to the host. It seems (to me at least) to be a lose/lose proposition going in. Very defeatist. But, if nothing else is working, you aren't in remission, and you're getting worse, then what are you going to do? go the I.S. route to buy time...

Anyway, here's a little something... That fill in doc I went to see. He called me today... just to say hi, and oooops (Dan, you'll love this one) he made a 'little' mistake writing my LDN refill script.. Accidently wrote it for 1000X my dosage... Did I happen to mention I'm really glad he's not my doctor?

Anyway, the mistake was caught... the compounding pharmacy was called, and no harm, no foul. Except for the batch of pills compounded at 1000X the correct dosage... I wonder what happens to them, and who pays for it
 
It shows how much he knows about LDN. He gave you the regular dose of Naltrexone for drug addiction. Maybe I am a little suspicious, but I would venture to say it is more likely the pharmacy caught the mistake, not the doctor.

Dan
 
No, he gave me just a wee bit more than a regular dose... They tested it at 300 mg for addiction, (and at which dose there were some serious issues) but typically, addicts only use 50 - 150 mg.. No, what he was going to give me in a pill was 4.5 GRAMS... or 4500 mg... or between 30 to 90 times the dosage an addict would take a day... Or, if I was using typical Naltrexone pills, thats 90 X 50 mg pills in ONE day. Or 15 times what it was trialed at for addiction. not sure what that dosage would've done to me.. Just glad that circumstances prevented me from finding out!! As for the pharmacy keying in on the mistake... I don't think that occurred. Why do I say that? The doc HAD to ask me for the number to call them... sort of like adding idiocy to incompetence.
 
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That sounds like it could have been serious. I would think the pharmacy would question that dose. At least I hope they would.

Whew close call.

Dan
 
Its my understanding that while the TNF inhibitors don't directly treat the symptoms themselves, by suppressing the immune system you indirectly allow the inflammation and ulceration to heal. Since most of the damage is caused by the immune system (at least in some cases, assuming it isn't bacterial bi-products or some other possibility) when the immune system is kicked down a bit, you are actually treating the disease, just not the cause itself. Hopefully you guys trying the LDN will continue having good results and in the future we'll hear some great things about it. I know I told my aunt about it for her boyfriend who has MS and he was interested in getting more information.
 
I have been very remiss in keeping this diary current. My apologies to those who have either a passing or personal interest in treating IBD with Naltrexone.

Here's the thing... it's been extremely uneventful. Actually quite boring. At the moment, my status is... pain levels down, practically nil, except for when I take my 5-ASA. I still get moderate cramping from those, esp. at nite. My energy levels are up.. I need only 1/2 hour or so in the morning to feel 'normal', whereas pre LDN, it typically took 2 or more hours to get right. My BM experiences are GREATLY improved.. typically 1 - 2 times a day... no 'urgent' episodes... no pain.. and on a personal scale of 1 - 10 (where pre LDN my typical I'd rate a '2', no pun intended for a change) I'd now rate my 'typical' at 6's and 7's (and to my UK friends, that isn't any attempt at Cockney rhyming slang - so don't read anything else into it, OK)

Side effects... My vivid or lurid dreams seem to have petered out, mores the pity. There is definitely been a change in my 'enjoyment' of smoking...
I get a head rush with the 1st of the day... but otherwise no pleasure of any sort when I light up. At the moment, I sort of class that as a 'con', as it in reality means one less pleasure... but at some point, hopefully soon, I will be quitting.. and it will take on a positive aspect. does that make sense?

Overall, I have to give the LDN 4.5 out of 5 on the IBD ROYAL FLUSH scale.
It has meant a dramatic improvement for me... there have been no adverse effects of note, and the cost of the treatment is minimal (about $1 a day).

The only reason I didnt' give it a 5 is that... welll, (and this is probably just so unfair of me, childish, unreasonable, impatient... ) I was hoping for a big 'eureka'... a '12 week' case of where I'd be... say at a 9 or 10 on my 'BM' scale... Able to leap tall buildings in a single bound.. or at least just eat anything I felt like. Thing of it is, esp. since i've had occasional relapses while on it, I havent' taken those chances. simply dont' have the guts yet.

So, I dunno what would happen if I skipped/broke my diet, or stopped taking the 4.5 G of 5-ASA every day... or stopped smoking cold turkey.
These 'extras' could be major factors in the success I've had with LDN.. or not. Thing of it is, I'm too scared to take the chance. Can't afford to lose!

Anyway, I'll try to pop in at least once a week. Esp if there's any changes.
Otherwise, how many ways can one say 'Same old, same old'.. Thanks all!
 
I am curious as to what your doctor thinks about your steady state.

I am also in the boring mode, with no issues. I have to do something pretty extreme to even change my stool status. Yesterday I ate six pieces of bacon, cooked a couple of eggs in the bacon grease and had some toast loaded with butter. An awful amount of lubricant in the ole guts. I did get get a bit loose stool, but I think any normal human would have given what I ate.

I am really as normal as anyone else. I still have a lack of energy sometimes. Not sure how much of that is shift work related.

Dan
 
Welll, that's one of the things that's keeping me from taking risks like pigging out on a 'normal' meal. My GI is on maternity leave, won't be back until July. And I think I may have alluded to my opinion of the GI that's covering for her.

Between no regular GI and a new job that I enjoy, dont' want to do anything to rock the boat.
 
OK. folks, my apologies for not keeping this diary current. No news is good news... The LDN still seems to be doing it's thing. If asked for a subjective take on my current status.... I'd have to say that I didn't find LDN a miracle 'cure'... BUT that I'm at about 75 - 80% of where I was pre-illness. And that is saying a lot, considering where I've been; and how 'aggressive' my 'version' of this disease has been. Currently, I typically go to the b/r only 1 - 2 times a day (when in the past I would commonly stop counting at 20).. The only pain I encounter during the day is from taking my 5-ASA.
My energy levels are up, and seem to be staying there consistently. I don't have any bleeding issues anymore; and more importantly.. I haven't had any 'spontaneuos' episodes or sneak attacks since I started on the LDN. I also have ZERO side effects to report... Had a few vivid dreams in the 1st few weeks, but those seem to have petered out and disappeared (SIGH!).
For those living on a restricted budget (like myself) the cost of LDN is not a problem. I pay about $1 - $2 per pill (depending on the prescription - my 1st was for 12 week supply 84 pills cost me $90, whereas my refill are for 30 days @ $54). I take one pill a day, after 10 pm. Now, its only been a few months... things may improve or deteriorate over time. Like other things in life, there are no guarrantees... But, if I was asked for a purely personal opinion; I would rate LDN a 9 out of 10, and recommend it IF the circumstances were right.
 
Ditto on everything Kev said. I would rate my recovery at 100% or maybe even better than I was, prior to my symptoms. My depression has been gone for a long time now, and it almost has to be the LDN that is keeping it at bay.

The supplements that initially rid me of it have been reduced to normal levels and could not be the reason anymore.

I think I may be the first person in history that is kind of glad I got the disease. It led me to resolve the worse problem of depression, and by intense research I found many useful treatment methods for many other conditions.

Dan
 
Is LDN traditionally combative against depression, or is that personal experience Dan?

Would be a REALLY good med for Crohns if it could address both, since they often go hand in hand for many of us.
 
Well, I dunno if I'd go as far as Dan. Course, I haven't reached 100% recovery yet... and may never. I wasn't a depressed person before this disease, and I don't know if anyone reading my posts on here would categorize me as such post dx; but I will admit it's nice to see a light at the end of the tunnel AND it not be another oncoming train.

Having said that, if one thinks about how LDN works... in the brain, not in the GI tract; AND the plethora of immune or brain related illnesses it fights, overcoming or alleviating depression could be a legitimate bonus. Hows that for potential side effects. And, like, for folks with habit forming tendancies (there is a clinical name for it, but it escapes me at the moment) another of these 'terrible' side effects is that addiction to drugs, alcohol, tobacco, ... all seem to be lessened/lowered. For example, since taking LDN, I really don't enjoy smoking. So if one has an 'addictive personality' (that's it!) the LDN is probably going to help you on that front too. Talk about 2 for 1!!!
 
I do not think LDN could be considered an anti-depression drug. I am not aware of it being used in that capacity.

It became apparent to me that my depression was related to inflammation. It was not constant, and would come and go. It started in my teens and continued until I started self treating my Crohn's in my forties. The large doses of Ginger and Turmeric eliminated it. I did miss taking it for a while and the depression came back quickly. In my case, depression was kind of an early indicator of my Crohn's disease. Of course there was no way to know that at the time.

There may be a few different reasons for depression, but mine was related to inflammation. I do not think it would have mattered what I took in particular, as long as the inflammation was controlled by that substance, the effect would have been the same.

I think in a round about way LDN is keeping my immune system working more properly, which helps keep the bad bacteria from coming back and causing inflammation. That is how I think the LDN is helping me.

I am taking Krill Oil also. I did not take this when my depression went away. The Krill oil could help, but my dose is so low I do not think it could account for all of the improvement. Omega three fatty acid is known to help depression if I remember correctly.

There are quite a few diseases that have depression as a symptom. I think this is quite often from inflammation. The diseases are inflammatory in nature.

If you can control the inflammation there is a chance you can control the depression. It also helps the Crohn's directly.

Dan
 
To make the direct cause and effect thing more clear I will explain it as I think the process worked.

I originally took larger doses of Turmeric and Ginger to block TNF activity. This reduction in the inflammatory process helped my Crohn's symptoms to a degree and completely eliminated my on and off again depression. The second effect was a complete surprise.

This bought me time to figure out a better treatment and what causes the disease.

Later on I reasoned the most likely cause of the symptoms of the disease is a bacteria, but was not sure which bacteria. Later I had a better idea of which ones were more likely responsible.

Then I found a chemical that supposedly would kill acidic bacteria in the body without killing the other bacteria. Acidic bacteria usually does not belong in your body. I am assuming this is true, I do not know for sure.

I proceeded to take Chlorine Dioxide which does kill pathogenic bacteria as demonstrated by other application of use.

By killing the bacteria, I am assuming I have killed off the offending bacteria, and the secondary effect is the elimination of the inflammation caused by the bacteria. My symptom elimination supports this hypothesis.

The LDN is keeping my immune system working more properly and therefore keeping bacteria that would be eliminated in a normal person, eliminated in me also.

I also do not drink milk which is probably where one of the two offending bacteria originated. The other being the sticky E-Coli.

Everything I have taken or treated with, for this disease was for a reason or a specific property of the drug, food, chemical or method.

Some failed to make a difference. Probiotics, Lemon Balm Tea, are two things that did little or nothing for me. My frequency experiments were inconclusive or even negative, but later gave me a big clue on the bacteria in question.

That is how I went about it and the end result. I may have something wrong, but I doubt I have all of it wrong. It has worked for me so far, so until some aspect of my treatment and results fail, I will assume I was correct enough.

Dan
 
I think diet, natural remedies, any number of things can battle depression. I even believe the 'effort/attempt' to battle it can work wonders. If one looks at the placebo effect... and I don't think medical science can explain it, but they have to acknowledge it works. I wonder, considering how LDN 'resets' the brain in regards to the immune response; and how it was originally dosed out to treat alcohol N drug addictions, that it MIGHT have a beneficial 'side effect' on addictions, mood, depression that science doesn't understand at the moment. I admit, it's a pretty weak theory, and it hasn't the 'weight' of just the common sense rational that if one sees big changes for the better in their IBD, then their overall mood has to improve, correct?

Anyway, I don't try to 'force' LDN on folks... it's too important a decision to be seconded to someone else. folks have to make that call for themselves... However, if one is considering something like Remicade as an alternative... here's a little food for thought. What if you kept that as your 'last chance' alternative? I mean, it has a pretty good track record, so one can feel pretty confident that IF you need to go there, it'll work. It avoids, for the moment, the whole 'if I start Remicade, I can't go off it so I can 'try' something experimental'. Essentially, you aren't breaking a commitment to Remicade; you are just avoiding or postponing it, right?

The trial of LDN does carry some risks. First off, does your dr support you? Or will your dr. refuse, abandon you if you insist on trialing it. Recently, a lady in Canada was 'fired' by her doctor for refusing to follow doctors orders even tho it took the woman 3 years to find that doctor. There probably is a whole lot more to the story, BUT drs. closing the doors on patients can & does happen. Do you want to risk that? Do you want to undertake a trial like this WHILE you don't have a doctor? Discuss it with your doctor first, then make your decision.

LDN itself... the other risk is that it doesn't seem to work overnite. If you aren't prepared or in a condition that would allow you to deteriorate while it was 'kicking in', then maybe the timing/circumstances just aren't right now. The gamble is that one's condition will slide downhill... and NOT improve. The numbers on LDN are really, really good. Best I've seen of all the drugs out there... but they aren't 100%. There are no guarrantees. I would say it is wise to have a doc onside who can/will step in IF, after 2 - 3 months, the LDN hasn't worked, and you condition has deteriorated seriously. That is a legitimate risk... one you can plan/prepare for. Don't just jump in, OK?

IF LDN does work for you, then what? Good question. Read the bit above about 'no guarranties'. I've got a drug, with no appreciable side effects, it is a simple pill I take at bedtime. It has a 30+ year pedigree in the medical community... at doses that make mine look miniscule. I have no worries at the moment about side effects, long term adverse reactions. I would put it on a par with a diabetic N insulin relationship (tho that's a bit of a stretch). I have a safe supplier of the drug... and it costs about $1 - $2 per day for my treatment... (important since I have no health insurance coverage). The reason this is important is that I may have to take this drug from this point on.... indefinitely. What's the point of finding an effective treatment if one can't afford it? Like, Remicade wasn't an option for me purely out of financial reasons... an indictment of Canada's health care system, but of little use to me. IF LDN hadn't worked, what may have happened to me?

Well, I would have wasted 3 months, $90, plus deteriorated. then it would have probably been a round of pred, another taper, and into methotrexate. Metho has some serious potential side effects, long term health issues, and it has a lower success rate than LDN, with well known steadily diminishing results/returns. Going in, one is pretty much guarranteed that one day it'll fail. Yet the side effects/long term issues are all too real a risk, even if the odds of some are small. I never crunched the numbers, but I would use the analogy of getting hit by lightning. Very small risk, but if it hits..? Boy, oh, boy!
 
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Hmmm, I need to preface this post with a little back story (as my actor friends are used to saying).. Yesterday, Friday... well, I had a really rough afternoon. Not health wise. Just, normally, my work as a school bus driver is pretty tame. I drive a number of routes, and bus kids of all ages, from junior hi, hi school, and some elementary school kids. All things being considered, my 'kids' are an above average group. Nice, polite, well behaved EXCEPTfor one run in the afternoon. An elementary school run, and it has kids from primary/kindergarten to grade 2. Easy, right? Wrong!

These are the least attentive, most disruptive children I've ever met. This one trip is the bane of my existence... but into everyones life a little rain must fall, right? Anyway, I don't know exactly what it was, whether it was the awesome forecast for the weekend, or that it was Friday, or whether it was that it was report card week; and now the pressure was off. Whatever the reason, yesterday these kids were at their worst. But, I got thru it. Then came my next two runs. Again, elementary schools, but these kids are normally pretty tame in comparison. Tells you the risk of assumptions. For possibly the very same reasons as my 1st afternoon run, the next two were just as bad... So, by the end of the day, I just wanted to come home N veg out. Did that with no problem. forgot all my worries N my woes and napped, kicked back, didn't have a care or a thought in my tired head. Watched some TV, went to bed early, took my LDN, and drifted off.

Today, I get up, start my morning routine, and grab my pill calendar to take my 1st dose of 5ASA. Staring back at me was my afternoon Friday dose. I must have forgotten it... 3 500 mg pills.. that's a pretty major slip-up. I had only taken a total of 2.5 grams versus my regular dose of 4.0 grams. I waited, fearfully, to see the results of yesterdays slip-up. Bathroom time, I was 'stunned' by the results. Using my homemade scale of 1 - 10, I hit an honest to God 10. I literally can't recall ever hitting that before, probably because the last time was WAY before I even took note of such things. I have hit a '9' during my LDN treatment... but that was the exception. most are between 6 - 8. I use it, and my energy N pain levels to guage how well I'm doing on the LDN. Now, it could be a coincidence... a fluke of nature. Or it could be that after months of LDN, my health is continuing to improve. I really don't know... but I would like to know. So, I'm going to go out on a limb again. Keep in mind my GI is away, and her fill in I wouldn't send a dog to. I'm just not in a position to check with a doc I respect first on this, OK? what am I planning. A little experiment in reducing my 5ASA to see if my situation stays up at 10, or deteriorates. If it declines, then I'll go back to full dose. If it doesn't... then I'll slowly ramp down on my 5ASA more. I wouldn't advise such a foolhardy venture to anyone else, but that fact that my LDN dose HASN'T given me (apart from today's BM) a 100% sign that it is working... leaves me a little uneasy. And, the next step was to decrease my 5ASA starting this summer IF the LDN was working.. which it seems to be. I'm just jumping the gun a little early.. I think i'll start at 3 g.

Wish me luck...
 
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goodluck kev! The 5asa never worked for me anyway so really the worst that happens is a minor flare in this. Best case is you get off of it completely or at the very least get your dose cut to 1/2 or 1/4 of what it was before or something. Granted im a bit skeptical that forgetting your evening dose was the cause of the change that fast, but who knows. Gotta quench the thirst of the scientific mind!
 
Thanks. Just for clarity sake, it wasn't my nite dose (I keep those by the bed)... it was my afternoon dose.. Saw the change approx 21 hours after...
 
good luck kev :) sounds like you know your meds and your body as well as any doctor could.. so yeah, follow your instinct and give it a go, with the knowledge that you can always revert back to the full dosage if you need to.
 
Good Luck to you. There is a risk that it will not work out well, but it is the only way to find out.

A ten! Wow, I never thought you could get to a ten given your long history of Crohn's. You must have most everything, gut wise, still intact.

It will be nice if you find you can get along fine without the other meds.

Dan
 
OK, day 2 of this 'experiment'. And another solid 10 on my BM scale. Problem is that it's almost too solid a 10 (I'll try to avoid being gross, figure most of us know what I mean). Now, I don't want to mess with constipation, or worse, impaction... That puts me on the horns of a dilemma.. If this progresses, then I could end up constipated or impacted. I could adjust my diet, go with more liquids (did that before) or add a little fibre. Problem with that is it means I made multiple changes to my regimen. An experiment is best done if you only make a single change at a time, and note the results. If you make multiple changes, its' hard to attibute which is responsible for improvement or detriment. So, maybe i'll play it safe, and ramp up to 4 grams... see if my BM scale goes back down to 6's and 7's, w the occasional 8. (that's where I was before I messed up my 5 ASA dose). If it does, then I'll repeat the ramp down... See if the numbers go back up.

The purpose? well, stumbled upon this latest improvement by accident. The initial test seems to indicate that it is the 5ASA change doing it, and if I can repeat it, well, an experiment that one can repeat with same results is on its way to being accepted. And, if what I have heard/read via here about 5-ASA is accurate, then it does make some rudimentary sense to me.

As an anti-inflammatory, I can understand the 'mechanics' of it flushing lots of fluid from the GI tract; which could, by design or accident, soften stool. If my LDN is working, and all signs seem to indicate it is, then my GI tract is most likely far less inflammed than it was, maybe indicating that my need of 5-ASA is less... So, the relatively softer stools I've witnessed post LDN are not a sign that LDN isn't working to full potential, but "MAYBE" a sign that I currently am taking more 5-ASA than my current condition needs/requires.

Anyway, my 'revised' experimental plan is to ramp up N down on the 5-ASA, see if I can repeat those changes in stool... if that works, then I'll likely try adding a little more fibre to my diet... My doc would shoot me if she knew.
 
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dont worry, kev, we won't tell her ;)

just a thought.. maybe rather than introduce more fibre into your diet, which as you say is another change for your body to adjust/react to, have you considered taking a tiny bit of lactulose, maybe even just once a day before bed? it might just soften things up without affecting your digestive activity too much.
 
Well, the $64 question is... what is lactulose? It sounds frighteningly like the 'lactose' which I'm highly intolerant of. Even as a filler in pills, it causes me a lot of gas, cramping and 'D'. Maybe it's a UK term unfamiliar in North America?
 
ah sorry kev, i assumed it was an internationally used drug, and i hadnt realised about the lactose intolerance. lactulose is a glucose-based stool softener, (sugar molecules actually) i suppose it comes under the heading of laxatives, but it is not full of harsh drugs, and tends not to cause the cramps and diarrhea that other laxatives do.. its very gentle, we use it here for young kids and the elderly.

bit more info here.. http://en.wikipedia.org/wiki/Lactulose

but if you have intolerance.. then maybe its not for you.
 
Thanks for the info/input.. Think I'll pass (or more aptly 'not') on Lactulose. My knowledge of chemistry means I can't decipher whether galactose, a prime ingredient, is another name or a distant relative of 'lactose'. And my overall goal is to decrease the pills I take.. seems counterproductive to take away 1 by adding others.
 
I had some stool on the verge of constipation when using the Chlorine Dioxide also. I think the body needs a little time to adjust to any change in the intestinal environment.

It is possible that when you remove your medication too fast, the body needs time to adapt to the new circumstances. It has already adapted to having it in your system, and when it is gone it is a pretty big change. A slow withdrawal may take care of the problem.

Just some random guessing. That is a good idea to try keep your experiment free of other variables. I have ruined a few, by doing too many things at once. I really hate when I miss out a a learning opportunity. The information may be of benefit later on.

Dan
 
Hmmm, food for thought, Dan. I dropped from 4g to 2.5g.. then up to 3g. I can either pop up to 4g, or stage it to 3.5g, then 4g. Decisions, decsions. I'm restricted to doing any stage moves in increments of 500mg (the pill dosage). I won't consider using a pill splitter, as the 5-ASA is supposed to be buffered.
Splitting them would compromise the buffering. I don't know if only differing by 500mg would provide a dramatic enuff change to be conclusive.

Considering how 'solid' today's 10 was, and how 'solid' my fear of impaction (been there once, don't want to revisit that scene of destruction).. think I will flucuate in 1g increments/decrements. I realize the yoyo effect could be hard on my system... but figure it's a risk I'd prefer over constipation.
 
You can also try a magnesium supplement called calm which I use. Its easy to adjust how much powder you take based on your needs and works great for me all the time.
 
Thanks, saidinstouch... "Calm", eh? Never heard of it either. Perhaps that's a local name... vs a multinational. I'll look around for it, but I think I'll go with my original plan for now, N see what develops...
 
http://www.thenaturalremedyonline.com/servlet/the-NATURAL-CALM/Categories?gclid=CPLY_rLG65ICFSFyYAodnUDHyQ

That should be a link to it. Its just a powder that you mix with some luke-warm water and do what I call the plug-and-chug. Now that I'm used to it I can just drink without the plugging and I just adjust up and down based on my bm for the day. It usually keeps me nice and soft, but sometimes I take too much and get the runs so then I titrate down a bit. If your experiment works for you, but you end up feeling a bit slow, this stuff works well and magnesium is good for you for other things as well. Also a bottle tends to last me 2-3 months if not more since I only require 1-2 teaspoons a night.

I know you can get it for about $20-$22 usd in stores like whole foods for the 8oz bottle so the site prices are pretty good. I prefer the raspberry lemon flavor as it actually is semi-refreshing. I hope you don't have to resort to something like this, but I find the price to be acceptable compared to miralax and it seems better than taking stool softeners long term. Also the results are really nice for me.
 
heh, mentioned the LDN to my doc at my Remicade appointment Friday, and showed him a printout of one the studies on it.....he didn't seem too fond of it, like most of you have said, it's not one the tradional docs are too fond of. He didn't even say he'd heard of it or not, but appeared as if he hadn't. Said I'd need to get it at a university or something, he wouldn't prescribe something like that...I think he's open to anything (he's always talking about the latest concepts "they" are working on), but there's just not enough wide usage/studies on LDN for Crohns I guess....?
 
Hey, Benson... Assume you're just asking out of curiousity. You can't do both LDN and immune suppressors.. they'd cancel out any possible benefits. Work against each other. And, you know the downside of Remicade... you can't go off it THEN in reality expect any great luck going back on it (if you need to).

Anyway, the playing with the 5-ASA continues.. Ramping back up seems to have worked as I anticipated... my BM scale dropped down to its normal, tho it took a little longer... And, tho this is sooo slight, I'm not 'positive' it really is happening, it seems that the lower dose my 5-ASA is, the lesser my cramping is.. not that I have a lot since starting the LDN. Typically my pains coincide with taking my 5-ASA, but I can't swear as to whether thats from the 5-ASA or the food I eat before it.. I strongly feel it's the former, not the latter.. I eat about 5 'meals' a day, or more accurately 3 small meals N 2 mid sized snacks that are smaller than the meals.. the 'snacks' don't give me any cramps, but that MAY be because they are smaller, or that I don't follow them with 5-ASA.. I dunno. I could be 'feeling' a phantom connection where none really exists... but if I revert back to my analogy of 5-ASA N inflammed GI tract WITH ointment on a sunburn, then it sorta makes sense. Initially, putting ointment on a sunburn hurts the most.

Not sure why the cramps peak at nite tho..

So, I'm going to dig out my executive decision maker (most of you refer to it as a nickel), decide whether to repeat this process just one more time Vs a couple.. And if the current results hold, then I'll begin to taper off 5-ASA in 500mg decrements every 4 weeks. And see where exactly I end up, OK?
 
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Sounds good to me and if your other problem starts returning, I really stand by the calm for great "relief" if ya know what I mean ;).
 
yeah, I asked him out of curiousity. In either the event that I never see any true remission out of Remicade early on, or, if the Remicade stops working in the future.

btw, I know it's your diary, but in relation to my Remicade stopping, the doc also said that as far as Remicade just "stopping" after a couple years, he says yes, this can happen, but, he gets around it every time by either modulating the dose or the frequency. He says he's never had a single patient that Remicade worked for initially that had to go off it for its efficacy "expiring", for lack of a better term. Good news for me, bad news for the insurance comp.
 
It just gets to a point that you are wondering if its a good idea to be taking 10mg/kg every month when most people get 3-5mg/kg every other month. And then you still have days at the end of the month where you really don't feel like the medication is working at all. Hopefully it doesn't happen for you, but in everything I've been told or heard, getting 2-3 years on remicade before you start running into this issue is fairly nice. You can stay on it of course, but it starts to not be so much of the miracle drug any more.
 
I have yet to see it as a miracle drug in the first place, it's just the only one that's been able to topple my recent flare to any degree....
 
Well, I repeated my experiment.. same results. Lowering my 5-ASA upped my BM scale. Upping my 5-ASA lowered my BM scale. Then I repeated it again. Yesterday... Hows' that expression go? Shit happens.. For whatever reason, my BM scale dropped to 3's... and my gas % went off the charts. Needless to say I'm immediately going back up to 4g of 5-ASA, crossing my fingers, and saying my prayers. You know why dr's use Guinea Pigs to experiment on? Cause they're expendable!.. ME? Not so lucky, and certainly not sooo cocky at the moment. When will I ever learn to leave well enuff alone. Fortunately, my pain levels stayed where they were at, and my energy levels haven't deteriorated either. Here's hoping that this is just a fluke.
 
well, before I had a chance to make any changes, conservative, moderate or radical... my body made a change all on it's own. My 2nd trip (2 is now my typical #) to the bathroom resulted in a good old fashioned 7 on my BM scale.
WTF!!! Guess I hit the panic button a little early. Realize I'm looking 'pretty' foolish at the moment... don't know if this is just the disease messing with my head, trying to scare the daylights out of me (which it did) OR (and this is far more likely... I just had an off day.. maybe a bit of food poisoning - maybe my cooking isnt' so hot, I dunno, I really dunno).
Anyway, just to play it safe, going to ramp up to 4g/day, and stay there for a while... just see how it goes.
 
After you get stabilized at the 4g/day maybe try going down one more time and see since the likelihood of being off both times seems fairly low. At least that would be my course of action :D. Also glad to hear that your BM scale improved again.
 
Hi, I am new here and was wondering why antibiotics are not used with Humira. I have my next shot Friday and have had 5 injections legs and stomach with no side effects, but I feel like I am getting worse and on cipro and flagyl. Does it get worse before it gets better?
 
Hi Pennywanna...

I just thought I'd let you know that when I was placed on Cipro for a little while, my docs took me off of the Humira. It was the same with when I was placed on Diflucan (not an antibiotic, but antifungal) I've heard that a lot of people stay on the antibiotics at the same time as the Humira, but my docs seemed against it.

Here's why I think they do it (and someone will most generally correct me on this):

I think that in order for the antibiotics to work correctly, you can not be on anything that will suppress the immune system (TNF modulators like Humira and Remicade or immunosuppressants like Imuran) This is because (i think) the antibiotics are developed to work in conjunction with the bodies immune system, and therefore would render them useless sans immune system.

As to why the Humira is not working for you, I have no idea, but it takes some people a while on Humira to see a difference.. and you said you've had 5 shots.... so roughly 2.5 months.... I would think you would be seeing results by now, but everyone is different.

Also, there is a whole host of information regarding Humira here, all you have to do is click the "Search" tab at the top of this page and search for "humira". A bunch of threads should pop up.
 
Humira

Thanks Katie, I have seen some of your responses to other questions and you seem knowledgeable on Humira. I have had Crohn's since 17 and diagnosed at 32, I am 47 now and have been on everything, Remicade, and any other drugs, methotrexate... you name it, costs are covered because I have coverage and live in Northern Ont, Canada, most drugs are covered. I am trying to think positive but it is discouraging everytime I think a drug will work, it fails. I have had 2 surgeries and my last was a nightmare. I seem to be worse now that I am on Humira, still havent heard from my specialist, I am his first Humira patient so I have to do all the research, have been on many sites but from what I read, it should work by now, since March 28th til now, there should be some relief, but instead it is worsening. I thank you for responding, it means more coming from some people who have the disease, no one can know what we feel. We have a CCFC support group here, and I will start attending to get more feed back. How long did it take for Humira to work for you? My last shot was in the stomach right side (doesnt bother me at all or hurt, just ended up with a headache)
 
You are right that somebody would come in and correct you Katie :). I don't know why doctors suggest stopping immunosuppresants while taking antibiotics so I can't enlighten you there. But in general antibiotics work independently of the immune system. Typically they work by blocking protein, DNA, or RNA synthesis in bacteria through a variety of mechanisms that I could not hope to explain since I am not familiar with most of them. Take flagyl for example...it unwinds DNA in anaerobic organisms and physically blocks DNA synthesis leading to cell death.

TNF-alpha is a cytokine involved in cell signaling in a number of different pathways. The only function it plays in the cell related to antibiotic function is that it helps promote phagocytosis allowing the cell to engulf waste and subsequently break it down. It is possible that the body cannot break down the waste from antibiotics killing bacteria, but that seems like a stretch to me. I'm not a doctor by any means and I still have a lot to learn about the immune response and cell signaling.

I wish I could provide more insight into why the humira isn't working for you as well penny, but each of us respond differently. I don't feel the humira works as well for me as the remicade did, but I've been under a lot of stress getting into grad school this year and my humira dose is nowhere near comparable to the dose I was on of remicade (if you were to consider I was on 2.5-3x the normal remicade dose twice as often compared to taking the regular dose of humira and getting almost similar results). I hope you find something that works for you. There are other options if you don't believe humira is working right for you, but it also seems you have tried a lot of them. I wish you well and hope you find something that works for you!
 
Saidinstouch, if one ends up not being responsive to Remicade (even at higher doses etc...) does that have ANY correlation to the potential efficacy of Humira? Are the likelihoods indepentent or related?
 
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I'm not sure since remicade has the issue of an immunogenic response because it is chimeric. I would assume not responding to remicade without this response could correlate with humira and other tnf-a inhibitors being ineffective, but I really couldn't tell you. I wish I could give you a better answer, but I just don't know :(. Your doctor would be the best source of information on this subject and you can get a second opinion as well if you really want to be sure you trust the answer.
 
Penny,
My symptoms got worse when I started Humira as well. This is how my GI explained it to me. My Crohns had been active for so long that the inflammation caused permanent scarring of my intestines. The Humira was effective in reducing the inflammation and suppressing the active disease, but when my intestines began to heal, the scar tissue constricted and became brittle. I was hardly able to eat anything and was in a lot of pain, although it was a different type of pain than before I started humira. Basically, the permanent damage done to my intestines was exacerbated when the active disease healed.
I ended up having a resection to remove about 2 feet of the scarred tissue, which had narrowed to the diameter of a pencil. It's been about 7 months now and I feel a lot better. I still take the humira, which seems to be working to keep the disease in remission.
You may want to ask your GI about this.

Hope this helps,
Greg
 
Thank you, Greg and saidintouch. I wish I found this site along time ago, you are all very helpful and it is great to hear other peoples trials and tribulations. It is very frustrating and so hard to keep positive (sick of hearing that) when you can't explain your pain and apprehensive about going on trips and or making plans. I was sent by my Gastroenologist here to Toronto Mount Sinai to see another specialist and said even though your response to Remicade failed doesnt mean Humira wont because it is another molecule. So my husband kept getting me to try it, and I was willing but scared because the Remicade put me in the hospital by my 3 injection, it went into my lymphatic system and I couldnt move my arms even with 2 percocets every 4 hours... With the Humira now, my question to myself is, do I risk having the next Humira shot tomorrow, making it worse or even into an obstruction (100 times more painful than natural childbirth, I know..). My GI called this morning and he is squeezing me in tonight at 6pm, he says I just may not be responding to Humira. I had a scope 2 months ago...special arent they.... but I finally for the first time in 30 years saw it on a picture from the scope and it seems to not be contstricting or narrowing, but still I am grateful to anyone of their stories. I needed all this info as my specialist and I are scratching our heads...why...

Thanks, Penny
 
Hi penny... belated welcome to the forum. Can't add anything to whats been said about remicade or humira.. Haven't gone tnf route (yet, and if the LDN keeps working, may never have to). As for a pure wild assed guess as to why docs 'hesitate' to prescribe anti-biotics when someone is on immuno supressors.. I "THINK" it may be as basic as the thought that wiping out all of ones 'good' bacteria (probiotics) while their immune system is suppressed COULD leave them wide open for any opportunitic infections.
My limited understanding of medicine doesn't come up with any 'red flags' re immuno suppressors AND anti-biotics otherwise. You might find some if you look at the specific anti-biotic AND the specific immuno suppressor, but the odds of there being a 'specific' adverse drug interaction I couldn't begin to calculate.

Anyway, from what I gather, you've been the remicade route, now giving humira a try.. Say that this is your docs first time using humira. Well, if it doesn't work out, YOU may want to look into LDN. There is a pharmacy in Toronto that will compound it... BUT, another wild assed guess is that your doc MIGHT be too conservative to consider 'off label' prescribing. It is NOT unethical or illegal for a licensed doctor to prescribe a drug to treat disease that the drug wasn't originally designed or tested for. But the drug has long pedigree... AND the dosage used for IBD is really, extremely low, very safe.

Just a thought that I wanted to express... cause I sensed you're worried the Humira may not work.. I think you need to give it more time, and worst case it doesn't... THERE are alternatives out there. LDN is just one of them.
 
Ldn?

Thanks Kev, but not sure what LDN is, but I do thank your for your input. I also know about VSL#3 but it is expensive...been to natural path, went the natural gluten free way, yogurt, Acidophulis, digestive enzymes, and all thru the years, if I went back to Cipro, it always went away....However my last shot I had a major stress factor, I was dealing with something that wont go away (an ex) and was dealing with it alone. I know everyone is different, and symptoms vary with everyone. I have an older sister, with Ulcerative Colitis and Severe crohns, but she bleeds, I dont (thank God?) I have the pain, and also my older brother has Colitis, my younger sister has irritable bowel and my younger brother was supposed to be tested, but wont let the doc's go where NO man has gone before....my uncles, one died of intestinal cancer at 49, and another Uncle is 60 and has irritable bowl. So you think it runs in families? But of course. There is a Crohn's and Colitis bbq at M&M's meat shops,, dont know if they have them in Halifax, but I live in Thunder bay, Ont, and I am going to donate and have spread the word. Saturday the 10th. No matter with all the drugs, it helps some, a cure would be amazing. Thanks for your thoughts and input.

Penny
 
Well, I'll try to be brief. LDN is acronym for Low Dose Naltrexone. Naltrexone is a drug thats been around for decades. In typical doses its used to treat Alcohol or opiate addiction. An independant study last year (spring of 2007) tested it in very low dosage (so low that the pills have to be special made) to treat IBD. Results were posted in a 2007 issue of the American Journal of Gastroenterology. They did so because patients given Low Dose Naltrexone (LDN for short) responded with remarkable success. 89% of patients showed marked improvement over the span of 12 weeks. The photos of some of the scopes performed on the test subject is truly remarkable. I think the lowest the numbers on this drug (tho a small test) was 60%. Even these lowest numbers compare favourably to traditional meds... AND.. the 'side effects' of Low Dose Naltrexone.. 'vivid dreams'. I could go on and on (ask anyone on here). Thing of it is that tho I use it, making decisions about how to treat 'your' illness is your decision to make.

I played guinea pig... so did Dan. Seems we both 'lucked' out, and I hope it continues to work.. I once before thought that this disease was behind me AND I don't want to go thru the turmoil of any further 'false hope' thingies. so, I don't look too far down the road, I just take a pill a day, fingers crossed
 
I would support kev's idea in trying LDN next if the Humira doesn't work for you. If you've gone a lot of other routes and your doctor knows how many things you've tried he/she might just decide it is worth letting you test out the LDN. If I were a doctor and had a patient not responding to conventional therapies and diet modulation wasn't working I'd definitely let them go the LDN route IF and ONLY IF it was their choice and they knew and accepted the potential risks involved if the treatment doesn't work for them. Meaning a risk of surgery, abscess/fistula, disease progression, and any of those other issues we have to always worry about.

If Humira stopped working for me I might try to convince my doctors that LDN is a good option. I'm lucky because I'm going to UCSF next year and they have sponsored/participated in at least one of the LDN trials so I could probably find an IBD specialist at the medical center there willing to prescribe it. I can't remember if it was a trial for MS or IBD, but regardless UCSF is probably one of the most progressive treatment centers in the US so I will have access to great doctors there.

Essentially, LDN is a great option for people unwilling to goto MTX when we get poor results from other less harmful treatments. If you are willing to risk a 3-6 month period of not taking conventional meds, then it truly sounds like a great choice. You should go through and read all of Kev's posts in this thread if you haven't already to get an idea of what to expect. This is a great resource for anyone considering LDN now or in the future!
 
LDN and me.. I resumed tapering my 5-ASA... went to 2.5g (down from 4g) a day... held there. Using my pain levels, energy levels, and homegrown BM scale, everything was good.. better in fact. I literally was averaging a 9 each N every day. Then today, w/o warning.. my BM dropped to a 5, AND (shock) I am losing blood again. My immediate plan is to jump, not ramp, up to 4g.

And pray.. This is the third time my health has hiccuped.. no explanation.
A theory that messing with the 5-ASA is causing this latest episode. I hope that theory holds up.. Or at least going back to 4g will stop the bleeding.
 
Perhaps I missed something here Kev but why are you cutting back on the 5 ASA?
I am on a maintenance dose of one 800mg tablet three times a day Asacol.
If I start to flare the gastro doc said to up it more until it (bleeding) subsides.

I've been on it about 10 years and he has not wanted me to cut back.

Maybe you could explain more as to why the cut back, and yes, I would jump back on the higher dose if you have blood.

Hope it turns around for you.
 
Well, on LDN I topped out at about an 8 on my BM scale, and I was still having pain... everytime I took my 5 ASA (tho worst at nite, per typical). My pain scale was diminished, but not gone. Then, I had a freaky, hectic day.. and at the end of it I noticed I'm missed 2 x 500mg 5-ASA pills (Salofalk). now I expected a setback.. but instead, things improved... my BM scale came close to a 10... very close. and my pain was less.. But I opted to go back to full strength... but, when I did, everything reverted back to where I was... 8's and pain with meds. That got me to thinking (I know, dangerous for a fellow my age to try new things).. So I experimented.. dropped back to 3g.. I improved.. back to 4g, deteriorated.
Repeated this... but then had a scary incident (much like this one, only not as serious).. Went back to 4g.. things settled.. right back to 8's N pains (tho not as bad as pre LDN)... So, a while back, I got my courage back (or just got foolish again... time will tell.. but odds are its the latter, I know)..
Resumed the experiment.. went to 3g, stayed there, things improved, no bad scary incidents at all... Then, start of this week, I dropped another 500mg... down to 2.5g. All went A-OK ... that is till today. Anyone else of the opinion this ol fool needs his head examined? Who is a vacuum expert?

Anyway... I'm back up to 4g.. or at least in the process.. had 2g already, and i'll have the rest in me by bedtime. and, no more experimenting, least not till my GI is back... barring she doesn't fire me when I tell her all of this.

Trying to stay positive... trying not to go into a mental maelstorm over my last trip to the bathroom.. it was barely a 3... but at least no more blood.
 
Well, here it is Day 4 since my minor relapse on Thursday... I am back at full strength 5-ASA.. 4g. Friday, no real improvement, but the bleeding stopped. Saturday.. bleeding again, and still no improvement. Today, no bleeding so far, but no sign of improvement.

Now, playing with your meds is stupid. Playing with your meds while in the midst of major new stresses is downright suicidal. Instead of getting my route on a permanent basis, guaranteeing me both a job N union status, my route was pre-empted by a union driver with seniority. That was a big stressor.
 
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Hey Kev!

C'mere.....
Hugs.gif
 
:( so sorry to hear all this kev. try & concentrate on getting your health issues back under control for now, and maybe the relationship gap will heal itself - the early days of a split are raw and surreal, then the enormity of the loss hits us. there may well be a way back for the both of you. ((big hugs)) kev.
 
Hang in there buddy. You have been through worse and came out of it fine.

Sorry things are going South at the moment. You will get back on track after a while. It just is a matter of time. Perseverance is your strong suit.

Dan
 
Hey Kev,

We know you are stronger than that. It's just your IBD talking. It's another battle that you'll eventually win.
 
Well, first things first. Thanks to all for the kind words. On the good news front, I have strung 2 days together with no bleeding. On the bad news side of things, now that I'm back at 4g a day, tonite I've got such a migraine...
no other news, good or bad, to report at this time. Not that I am expecting any... and that isn't being negative.. it's a realistic statement that such things take time.. change in stages..
 
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Hi Kevin,sorry about your relationship problems.But am glad that the new medicine is helping you feel better.I am starting Methotrexate next week,my GI choice for now.
 
Well, it looks like this was a little hiccup, for want of a better definition. I can't take a peek inside there, but the bloodloss may have been from something other than IBD. Internal hemms are a possibility. Whatever it was, it is turned around. And, if it was a flare, then I guess my expectations (tho I really shouldn't have made/assumed anything) were off the mark. I shouldn't expect LDN to keep me symptom free, flare free, etc..
I should expect it to keep my immune response from going haywire, to deal with flares in a normal way, which may involve flares then slow to heal issues.. It may be premature, but it does appear to be healing at the mo
 
They were still looking for participants the last I heard. I think the study has started, but I am not sure.

Dan
 
I think the one that was announced 2 years ago I 'believe' was the 1st, and it was published in spring of 07.. it was only 14 weeks or so long.. Now, I may have that bass ackwards.. When I looked at the published info, the "dates" were the least thing I was interested in.. And, until the numbers were totaled and the results published; doubt if they'd be any interest/motivation for a 2nd study. But that's just another WAG too
 
Hey folks.. Flies time when you're having fun.. (or something like that???)

It's been a while since I updated this, lots of stuff going on.. But I realized I have been a bit remiss.. The LDN has apparently been doing its thing, and it has been faced with my being subjected to major stresses the past 7 months, a number of them off the scale.. and to top that, a family matter that has me literally sleepless, but at a loss to do anything about. And the verdict.. NOT only have I not had any relapses the last few months, but in the last 3 weeks, my personal bodily functions have completely normalized. I didn't want to say anything until "I" was totally convinced, but on my own home grown bathroom scale, I've been consistently a 10 for 3 weeks now. I really never thought I'd see that again, at least without major surgery. :)
 
i'm sorry to hear your troubles are still causing sleepless nights Kev, but thankfully it looks like your Crohns symptoms are one less worry you have to think about right now. whatever you're doing, keep it up - and hopefully everything else will fall into place soon, too.
 

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