Order of Medications prescribed for Crohn's Disease

[forum contributor]

Is there an order in which you use/are prescribed meds for IBD?

I was first prescribed Entocort (Corticosteroids). Then Lialda (5-ASA). Then Canasa (5-ASA). Then Humira (TNF-blockers).

So far, nothing is working.

Is there a certain order, like a hierarchy, to use, like if one doesn't work, you keep working your way up?

 

[My Butt Hurts]

Some docs start mild drugs to strong drugs, and some are opposite. I don't think there is any particular order. It may be regional too? Drew's doc says that treating with antibiotics is an "East coast thing". And I have heard about tons of people on cipro and flagyl.
Maybe you need a combo of them? I am on pentasa (mild) Imuran (medium) and Remi (strong) and was also on pred at the beginning of it to help induce remission. Now I don't know which is working, or if I should even stop one or two, but at least I am remission for the most part right now.

 

[forum contributor]

Hmmmmm....... I tried to find it too, but couldn't. I thought I had done one, but maybe not...?

Quick rundown:

Contracted H. pylori from TCBY outbreak when I was about 10 or 11. Have been sick off and on since then.

Squared that away.

Kept getting sick for years. Nausea, vomitting, diarrhea, constipation,etc.

In December of 2006, I got extremely sick - couldn't keep anything down. In and out of the hospital and laughed at by doctor after doctor until I got better in April.

In April of 2007, finally had my first c-oscopy with biopsies and my current GI/PCP found Microscopic Colitis. Started Entocort. No help.


I forget what happened in between then, but I was diagnosed with Ulcerative Colitis.

Then in June of 2008, on a cruise, I got sicker than I've ever been in my life. I had constant and bloody diarrhea, nausea, and pain. In less than 2 months, I lost about 30 pounds. (The pics below are from that cruise, so subtract 30 pounds from that).

I was in the hospital in July, and they actually got mad at ME because I hadn't sought help earlier. That's right, get mad at the patient.

In August, I had another c-oscopy and now my GI doesn't know if it's Ulcerative Colitis or Crohn's Colitis. I was put on Lialda. He also found rectal ulcers.

A few months ago, because of extreme fatigue, weakness, dizziness, and paleness, I got a CBC and occult fecal blood test (that I had to mail away... hahaha). The tests showed anemia and that I had lost 3 units of blood. He believed it was from the rectal ulcers. He put me on Canasa (butt rockets) and iron supplements (twice daily). They have helped with the butt pain.

I feel worse than EVER. There are so many times when I'm going to the bathroom and have to make sure my face is in a trash bin. I'm feverish whenever I go to the bathroom. I can't take my pills without almost throwing up every time.

I started the Humira 7 weeks ago. I don't feel any better.

I just want to know what's next if this doesn't work?

 

[forum contributor]

Oops... that wasn't nearly as "quick" a rundown as I had planned.

 

[forum contributor]

Some docs start mild drugs to strong drugs, and some are opposite. I don't think there is any particular order. It may be regional too? Drew's doc says that treating with antibiotics is an "East coast thing". And I have heard about tons of people on cipro and flagyl.
Maybe you need a combo of them? I am on pentasa (mild) Imuran (medium) and Remi (strong) and was also on pred at the beginning of it to help induce remission. Now I don't know which is working, or if I should even stop one or two, but at least I am remission for the most part right now.

I don't remember being put on any antibiotics at all.

Not yet anyways.

 

[farm]

Maybe Pentasa or Remicade? I don't know but I hope you find something soon.

 

[My Butt Hurts]

Shantel has a point with the prednisone. I truly believe that it got me in remission and the Humira helped me STAY in remission. (well - until it quit)
Then I was on pred again as I started Remicade, and now I am staying in remission with Remi.
A LOT of people on here say that they absolutely hate pred, but for me it works REALLY well with few side effects. I would never say to try it, but it just another option to think about if you haven't had it before.

Well, maybe I should take the "few side effects" statement back. It gave me a LOT of energy - but I liked that and didn't have problems sleeping. It gave me a huge appetite, but I needed to gain weight. Not sure if I had a teeny bit of moonface or just got chubbier in the face, I think it's the latter. I did get some crazy acne, but mostly in my scalp. Kinda fun to pick at - no one could see it, haha.
That's it I think.

 

[beth]

My GE seemed to suggest it was something like:

pentasa -> azathioprine/mercaptopurine -> methotrexate -> humira -> infliximab

with Elemental diet -> prednisone as the immediate 'rescue' type stuff.

 

[forum contributor]

MBH, do you mind if I ask why you stopped the Humira? Was it not working for you?

My GI... I forget why, but there's a reason about him not putting me on pred. I totally forget why. I'll ask him tomorrow. I remember being on some kind of steroid pack a while ago (just remembered), but don't remember the name. It didn't do anything for my stomach.

IDK. I heard Humira takes about 2 months to know if it's even going to work. Does that sound right?

 

[forum contributor]

Thanks, Farm. Me too.

 

[Lisa5326]

Don't have any help, but i'm with farm, you need something, hope you feel better soon.

 

[My Butt Hurts]

MBH, do you mind if I ask why you stopped the Humira? Was it not working for you?

It started kicking in really fast - like day 6 I think, then great remission quickly, but it started petering out after 4 1/2 months. Then I was in a bad flare while my insurance fought a double dose of Humira - finally I went on Remi 9 months after starting Humira.

 

[My Butt Hurts]

people in flare and typically with gut issues usually can not tolerate iron..

Not sure if how a person tolerates it is diferent, but there is a brand if iron out there called Slow FE. It's expensive, but it never bothered my belly when the cheap red iron pills gave me bellyaches. I know that KatieSue takes or has taken this brand too. Might be worth trying if you're low on iron.

 

[forum contributor]

Re: iron, I take the kind that's supposed to be really gentle on your stomach.

I'm a vegetarian, so it's not as easy to get iron in any other way, I guess.

 

[imisspopcorn]

Hi Santos
I'm sorry things aren't working faster for you. When I was first dx in 1998 I was put on Prednisone, asacol,flagyl, an acid blocker.too I live on the west coast and was put on the flagyl so who knows why doctors do what they do. Maybe it has more to do with their training??
I really think the Combo of pred/asacol did the trick. For years I was only on the Asascol but I was also pregnant twice and I think those hormones really helped me.
Does your doctor know how bad you are feeling? I would think that you would have been bumped up to prednisone by now. When your feeling crappy and having a lot of blood call the office until you either speak to him or they get you in to see him. My doctor always says I'll see you in "so and so many months, but if you get sicker call me". Also I was Humira but it did nothing for me. By that time though I really needed surgery. Sorry to write so much. I hope you start to feel better.

 

[forum contributor]

Don't apologize for writing "so much" - have you SEEN how much I blab??

I can't remember the reason, but there is one that I haven't been put on pred. I'll ask why tomorrow when I see him. He knows how bad I'm feeling because I constantly email him and go to see him at least once every 2-3 months. I'm always in contact with him. Maybe more than I should be...

I'm going back through my records tonight to look and see what else I've been on, if anything...

 

[Becky]

I am not as fimilar as everyone else on here with all the drugs. I am just going into my 3rd yr of treatment.
I started off with imuran, then entocort, then remicade. Right now I am on entocort and remicade. I have only been on pred. once for about 8wks. That was mostly for joint pain.

I take iron because I am told to but it always confused me. it is so hard on the stomach but they were having me take 4 pills a day with stomach issues?? I am just taking 1 a day now and I can handle that.

 

[fenway1971]

Oh, poor Ris. I'd let the Yanks win if it meant putting you in remission.

Has your doc considered an experiment to see if you're body rejects 5-ASA drugs? I found out - through trial and error - that the ASA drugs actually worsen my symptoms. I'm allergic or sensitive to them and supposedly 12-15% of patients are like me.

I also agree with others. Prednisone might help. I hated that drug for its side effects but it did the trick in clearing up my symptoms. I then migrated to 6-mp which is what I'm on now.

I've never found antibiotic therapy to work. Does the opposite for me.

 

[MD24]

immediately after the diagnosis(about 2 weeks ago) my Doctor put me on all this drugs at once:
prednisone,imuran,5ASA,cypro,metronidazol
that s a total of 14 pills/day, i dunno if its bcus my crohn is that terrible or just the way the doc treat it..
cypro was temp just for 10 days no problem
metro(name medazol here but i think flagyl in most of places) is the worst thing ever happened to me,the nausea was just unbelievable,it messed up my body.called the doc and he told me to stop it for a while, i was supposed to be on it for 2 months but ill never take it again no matter what,crohn symptoms r way more gentler than this damn thing to me
currently taking 60 mg of pred,100 mg of imuran and 1600 mg of 5ASA
(the first for 4 months,second for 5 years and third for 2 years) at least this is the plan for now and am scheduled to see the Dr in 2 weeks, am having no side effects so far except crazy appetite from the pred,my jaw hurts from eating all the time
i weigh about 100 lbs but been consuming about 4000-5000 calories/day last week or so,gaining no weight though,just translated every morning in what i think the largest sh!t in the history of mankind
holy crohn

 

[Lisa5326]

I take iron because I am told to but it always confused me. it is so hard on the stomach but they were having me take 4 pills a day with stomach issues?? I am just taking 1 a day now and I can handle that.

Some people on here take a slow releasing iron tablet (slow Fe) which may get you more mg's and not be so rough on you...

i weigh about 100 lbs but been consuming about 4000-5000 calories/day last week or so,gaining no weight though,just translated every morning in what i think the largest sh!t in the history of mankind
holy crohn

LOL cleaner-outer poo!