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Remicade = remission, your wait?

How long, if Remicade worked for you (ie: into remission or almost there) did you wait? I'm going on 3.5 months in a week, and I'm only maybe halfway between where I was and remission. I'm now done loading, and wait for 8 weeks now until another infusion, so about mid June.

Perhaps I need a higher dose than 5 per kg? 10 maybe?

I just get told by the doc everyone is different. If so, anyone THIS different? I am doubting it's efficacy for me and pondering on Humira or other alternatives....
I have been taking it for about five months and after the first dose I felt fine and te next dose I was better. I was supposed to have my last dose, not last altogether but my every 2 month dose, on Monday but I got an abscess. I don't have many problems but this abscess I have have seems to keep wanting to come back.


Senior Member
Hey Benson... I never went Remicade... but I did wait weeks for any... welll, substantial signs of improvement on LDN. And, the signs, tho promising, were NOT a total fix... Like, I'm still not at 100%... and I don't know if I'll ever get there... Perhaps, even the best of treatment, can't roll back the 'clock' enuff to get me to 100%. That's a potential reality that I'm still not prepared to accept... at least not yet. I'm still hoping/clinging to the hope that, with the passage of time, my body will get back to where it was pre-illness. That could very well be a totally unrealistic expectation.

This disease is such a bitch (pardon my language folks). And patience is so hard to muster at times like this. But, you have seen some improvement, so I think that you should see your doctor, talk over the option of doubling your dosage per kg, discuss the potential risk factors of doing so (if any) AND try to get him/her to commit to a timetable, a benchmark of sorts, as to when to try this... when to go beyond your current dose. That seems a better plan... In the meantime, if it were me, I'd take out my frustration on a heavy punching bag... or split some hardwood, or something. Maybe I am just childish at heart; or maybe it's an old male thing; but venting pent-up stuff like this makes me feel better.. It's totally 'impractical', I can't defend it as being adult, or logical, even rational.. but for whatever arcane reason, it works for me. maybe it'll work on guys of your generation as well.

And, like, if you do find that you N your doc are at a stage when remicade just is not cutting it... then maybe by then you'll have seen enough of an improvement to take a gamble on LDN (altho the Humira sounds like a great alternative - just wondering if that approach is different enuff from Remicade to work - like, if the Remicade doesn't do it for you, is humira that different that it would/should? guess thats' something only your doc can answer... tho you may want to opt to keep humira as a last resort IF LDN didn't... or maybe your doc is a closed book when it comes to LDN?)

All the best... Final thought.. Maybe at times we all focus too much on our disease? That old saying.. "A watched pot never boils" sort of thingy..
You know... I think... in fact, I KNOW I focus way too much on this disease... I focus way to much on my health in general... but I don't know how to fix that. I was thinking about this last night as I was in bed. I want to just go back to the times pre-diagnosis where I though I was invincible and that I'd be healthy my whole life. I worried too much about dumb things before I was diagnosed and now that I'm in a relationship, at college, have crohn's disease, am living on my own, have a job, have a dog, and have a dumb roommate that can't do shit for herself (pardon the french) I just can't turn my brain off.

And the media doesn't help at all... always talking of rampant MRSA outbreaks, Avian Flu, Tuberculosis, Food-borne illnesses.... is just too much. I have to constantly remind myself that the media shows the news that will get ratings... and I also have to remind myself to STOP WORRYING. I just tell myself that if something goes wrong, it can be fixed... and if it can't, then I had better damn well made sure I've been living life to the fullest and working to my potential.

I've said it before and I'll say it again... Sera' Sera'


Senior Member
Ahhh, grasshopper, you have snatched the pebble from my hand (theres an old media reference only some folks of my generation or older will recall)

anyway, katiesue.. congratulations. I think you've adopted a very 'healthy' approach (if one can use that term in connection to our collective disease?) in dealing with your/our new reality. Anyone ever wonder WTF this old fart was doing? Popping in with totally off topic, or inane posts, at sometimes seemingly the most inappropriate occasions or places. Well, it's not that I'm one of those 'buffoons' who try to make a joke about EVERY thing.. you know the type. Altho I've always been a light hearted spirit by nature, the new 'reality' for me; for all of us, is that we have undergone a life changing diagnosis. And, no matter how much we'd like to go back to the good old days pre-diagnosis, that just isn't in the cards. We can't do a damned thing about it. But, we can 'actively' even 'aggressively' try to... wellll, tip the scales of reality a little. It won't change our outcome, wellll; maybe it will... but it can change our perception of our 'reality'. Laughter MAY not have the power to bring us out of a physical tailspin, but it CAN make a difference in an emotional one. And, despite the fact that there are times when we have little or no control over the physical path we are on; WE can do something about the emotional or mental path we are on. I know this sounds trite, I know this sounds over simplistic, but I also know this is true. A friend who eventually lost a heroic struggle with AML taught me this... The final, physical outcome was totally out of her control, BUT.. the life she lived in those remaining days she always managed to control. I miss her. I only hope that I can share the valuable lesson she taught me.

Anyway, here I am, preaching again. And, not to hijack this thread, or to make light of a serious topic, but since none of us here have the 'power' to make this disease go away, we CAN fight it in a way. some may feel its just a defense strategy, a coping mechanism, a waste of precious time that can be better spent talking in more serious tones. But the fact of the matter is that there is more to us than just the physical; and that defense strategies or coping mechanisms do just that! So, if this disease has you down at the moment; or your feeling blue; or just overwhelmed by all the medical info or mis-information you are bombarded with EVERY freakin day.. STOP. Go find a 'funnie', or a joke, or something totally unrelated. Share it here with your fellow crohnies. It won't make your symptoms go away, lessen your cramps nor curb a fever; but it may make you feel better... for just a moment. And it may bring a smile to someone elses face on here.. and thats' something we can do. Thats' something that we CAN stop this disease from taking from us. I can't eat what I like, I can't drink what I like, I can't party like I used to... but, dammit... I can still laugh like I used to before I got ill. and I do... Like... Q 'What did one turd say to the other?' A "You look like crap"


Kev~ Why was I under the impression that you've been in remission for ten years? Was that in the past and not the case now??? Perhaps I need to pay better attention.


Senior Member
WAS... As in past tense. Try to recap this into a short story (real challenge for long winded ol fart like me).. Picture it... early 90s. Gave up smoking. less than 6 months later, I start cramping, bloody stool (any of it sound familiar). My GP couldn't diagnose it, despite 2 sigmoidoscopes and a barium x-ray of bowel. Put me on steriodal enemas ... 45 days at $30 a pop. Hurt like hell. At the end of 45 days, all symptoms just went away..
I remained symptom free, med free, pain N bloody diarhea free till 2001, few months shy of 10 years. 2001, I developed my 1st bout of mysterios pancreatitis... which was originally mis-diagnosed as pancreatic cancer. I finally ended up hospitalized, that fast tracked me for an MRI, MRI allowed them to correctly diagnose it as pancreatitis... but atypical, as there was no stones, blockages of bile duct, my bloodwork, etc., didn't show ANY reasons for it.. It went away after a week in hospital w/o explanation. But, while thinking I had cancer, I resumed smoking.. which my docs now think MAY have staved off any bleeding episodes from the colon which would've clued them in to a possible rare connection to crohns disease or colitis... 5 years later, I gave up smoking again... within 5 months I started bleeding.. That leads me up to today.. (skipping the operations and hospitalizations in between - oh, and resuming smoking - which stopped my bowel bleeding).

So, long story short, I've had two periods of ersatz remissions where I had no symptoms despite being on no medications, diets, etc., etc., Go figure?
No shooting here Katiesue, Crohns is punishment enough for anyone (not that you should be punished for having good results from Remicade)

Hmm, one odd thing is that they do this by weight, right? Well, as we all know, Crohns can drop that like an infant in Brittney Spears home (okay that's a little wrong)....back in the hospital, I was around 148 after plummeting from a lean and fit 182 in August....now after some improvement in symptoms, more eating, and especially a nearly full workout regimen again, I'm up to 166, and climbing; perhaps this is something that should be looked at in the per kg assessment? Especially if I intend to put back on all my muscle and go even above 182 lbs, then I may be too big for 5, I wonder... Good thing I should mention next time I'm talking with the GI.

On another note, the seperate GI I saw for a second opinion not only said he agreed with my treatment regimen, but he said to my point about Remicade not being "my thing" that most of the people he's moved FROM Remicade to Humira loved the Humira. But as we know with the antibodies, I think it best to give Remicade it's fair shot.


ele mental leprechaun
Hey Benson,

I didnt start to feel better until after my 3rd/4th infusions. After the 3rd I thought ooh might be a little change here. After the 4th felt better. Overall it has helped clear my skin and settle my asthma alot too. I am just finishing 2wks off work due to chest infection and asthma but didnt end up in hospital with it and nor did I need nebulised meds for it. THAT is a huge step forward for me. Also got away with 5 days 40mg pred instead of 60mg and wks coming down. So big changes eh? Am just really drained and keep sleeping now.

GI wise I am still having problems but things are greatly improved. What threw me (and some of the guys might remember this) was my gastro cons wrote to my occ health cons and said I was in remission. I was thinking "remission?" WHERE? When I finally got talking to my gastro cons he said they measure remission in relation to improvement and where I am on THEIR scale not whether I am symptom and problem free.

I still have issues with urgency (which isnt as severe but still dont make it to the loo in time several days a week), pain (GI and muscle, joint and nerve) and cramping and nausea (which is settled a bit with meds as hits fast out of the blue or can last in the background all day) as examples but the frequency for me has decreased in a day from 12-14 times to around 5 visits to the loo. So yes big improvement on the remicade but not there yet.

Currently they are looking at either increasing my dose or my wkly visits. Am on 6wkly infusions changed from 8 before xmas last year. I have always been on 5mg/kg and they are thinking of 10mg. Have been on remicade almost a year now. Despite the improvement they are not happy and are talking about the above or Humira but havent decided yet.

I was told to make my next app for 6wks but it may change. So who knows.

You definately arent on your own Benson.

Hope my ramblings help a bit.
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When I took remicade it only took me a few doses (don't really remember the timeline, it was several years ago) for me to start to feel better. I was feeling great for about a month and a half before my symptoms started coming back. Eventually they stopped it because it wasn't keeping me in remission.
Well its been about 3 months now that I have been off the Humira and still waiting to get the ok from Insurance Co, to get back on Remicade.
Oh how my body urns for that moment. I can hardly get outa bed cause My joints and muscles throb and ache so bad
So are we able to think that it's not so cut and dry w/ remicade? Perhaps it's not so simple as "works or it doesnt", and there's a middle area for many where it sorta cuts it, but not entirely. We have to wait it out to find out what area of that middle area we are at? To see if it'll be enough to say it's the drug of choice?
Also, ANYONE at all see symptoms TEMPORARILY get worse after going off pred? I mean not just fatigue, but worse BM's and upped frequency? And then did it go away shortly after?

I have gotten slightly worse, and I hope to God it's a temporary set back from withdrawal, and not the flare worsening.


Senior Member
My symptoms steadily deteriorated after coming off pred the last time. In fact I started to decline 2 weeks before I finished my pred. My downhill slide was constant, and only slowly reversed after being on LDN for several weeks. my 'take' on LDN was initially 'skewed' by the extent of my decline post pred.. if I had to do it over again, I wouldn't have gone so long without some medication before starting a 'new' treatment. So, if the 'remicade' is working a lot slower than you anticipated/hoped for, that is almost exactly what I went thru initially with the LDN. My guess is that, in the original study, subjects had IBD, but were likely 'steady;, not 'flaring'. I make that ASSumption on a guess that doctors heading up the study would not want to risk it on folks whose condition wasn't stable, and subjects who were not stable probably wouldn't be too eager to take the gamble either..