• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.


Crohn's 35

Inactive Account
Interesting and it don't surprise me of that type of drug helping. Problem is Canada is the last country on the planet to get any drugs passed here. Docs dont prescribe anything they dont know about or isnt available here. Anyone else heard of this or tried it? Even as a trial?
If it has any chance of working I'll jump on a plane to Australia if I have to.. :). It mentions its even more effective in combination with low doses of prednisone so I've got that covered, I've been on 6mg prednisone for 2 years now.

Crohn's 35

Inactive Account
Are you on Entocort? I am on pred but tapering fast til I get my Gi appt on the 23rd. So sick of being on meds and they dont work and side effects are not fun!
No I heard from my doctor that Entocort wouldn't work for me because of where the inflammation was in my intestines. Can't remember exactly but I think that entocort was better targetted to the lower and mine is at the terminal illeum or something? Who knows. But prednisone has been good for me.. I would like to get off it eventually though because its making me "skinny fat" (losing muscle in spite of supplementing protein and lifting weights).

I tried 6MP but had drug fever from that and had to stop.

Are you on entocort? How is it working for you?

Crohn's 35

Inactive Account
I am the Prednsione cheap many side effects kind.. I have my crohns in the Terminal Ileum right where my appendex used to be. But I have been on Entocort and because it is mild and takes longer to work it was working for me either. I have had two resections and that last one never fully recovered from it.

I also have been on Imuran and 6mp but affected my liver within a week. Been on Remicade, severe reaction to it and Humira worked for about 5months, to bad cause was so convienient.

At the moment I am on cipro, flagyl, pred and pentasa, I am fighting a flare and the left has gotten worse since Feb. Wanted to try Cimzia on compassionate trial and couldnt get it. So my docs are pulling their hair, saying I am a special case! Yeah I am special alright. Surgery was put off but in the midst of getting a referral so hopefully I can get it under control.

BTW what country are you from USA?
Yikes! I feel kind of guilty having such mild symptoms on this forum. But I guess my time will come eventually. I'm trying to do everything possible to avoid surgery some day.. Sorry to hear nothings working for you :(

I'm in London, Ontario. Have you used the Trillium provinal drug plan to pay for your Remicade etc? How long does the application/approval process take? I'm thinking of trying Humira but maybe its overkill for my mild symptoms. Did you tolerate that well?

Crohn's 35

Inactive Account
Ha, I wondered if you were Canadian lol. My husband has top notch insurance and they paid for it. I had Remicade infusions done in a clinic but the cost we paid and then got reimbursed. Remicade is expensive and it is about 4100.00 a shot. Humira is about $700.00 a shot but Abbot labs makes it and they have a pay plan for Humira. The initial dose for Humira is 4 shots so the hefty bill is in the beginning. Humira was great, no sides, and no pills!

If you are in the milder symptoms I would avoid the big guns if you need to be. Try to get off Prednisone, it is an evil drug, and the side effects for you bones is not good. Surgery is sought to be the last resort but it depends on the disease. Check out www.ccfc.ca there is lots of information there.

Do you have insurance? Are you working? I also tried Methotrexate which the hospital paid for it, but then again if you are in a milder stage you may get a milder drug. Do you have a good GI? Also you can look into LDN which if I can get my flare down I maybe trying it next... :eek:

I checked out the prices for remicade etc last year, I recall it was around $33k per year. But with the Trillium Drug plan I would only have to pay $300/month for it, the province pays for the rest (thats my deductible which is calculated based on my income). I'm self employed so I don't have any private or work insurance, just OHIP. I was just wondering how long I'd have to wait for Trillium approval if it comes to that.

I would like to get off prednisone, but I've tried all the steroid-sparing drug options and can't tolerate them. As I mentioned I've been at 6mg prednisone per day for around 2 years now since I was first diagnosed, and for the most part its kept me in remission. A couple months ago I thought I would try and taper them down to nothing again and every 2 weeks I cut my dose by .5 mg (half a 1mg pill via a pill splitter). But it triggered a flareup which is slowly getting worse now. I've been chasing my symptoms with my prednisone dosage and am up to 8mg per day and the symptoms are still gradually getting worse. (Note: When I say my symptoms are worse they still aren't bad compared to most people. I haven't had any diarhea that I can remember in 2 years, although I do see blood almost every day and have brief upset stomach episodes throughout the day).

I shouldn't have messed with a good thing! I'm mostly on a liquid diet now (ensure meal replacmeent drinks, boost, EAS protein shakes) to try and put out this flare. I feel great today so maybe its calming down now. Whenever things get worse I start researching again and reading the crohnsforum postings :)

Anyway, Humira sounds appealing but I don't want to waste it and stop responding to it when I might really need it some day.

I was wondering why anyone would get Remicade when they could just start with Humira? Is it just a question of convenience (every 2 months versus every 2 weeks)?
This is very interesting reading. Dairy cattle are affected by this TB cousin with Johne's disease. It is usually caught at birth when the calf drops head first into infected feces and then will usually lay dormant for several years before flaring up and causing the squirts and rapid weight loss, followed by death. Ive often wondered, even before my diagnosis, if this could be it. I just find it interesting that the exact cause is determined in cattle but cannot be ruled out in people? Weird if you ask me.


If anyone has been following the posts made by CDReasearcher....

I do NOT want any debate made about this thread, but I thought, seeing as how I simply searched our very own site to see if any one else had discussed MAP, and found this thread (and another, but this thread had the external link I found while doing a bit of investigation OFF the site regarding the topic)... so I thought I would bring it to your attention....

TOTALLY as an FYI folks.... you make your own call......

Cheers :)