Newly diagnosed; i'd appreciate any wisdom, any at all

[dskath]

Hi all -

I was diagnosed with moderate-severe crohn's in April of this year. I was immediately put on 40mg of prednisone and started remicade infusions. I was feeling pretty good, so my GI began to taper me off the prednisone (fairly quickly, dropping 5mg every week). Literally a week after I was all tapered off, my symptoms began returning - "D" and awful cramping in the mornings. My GI then put me back on prednisone - 20mg this time. I have been on that for dosage for about the last three months, and am now veeeerrry slowly starting to taper off (5mg every 3 weeks). I still have occasional loose stool and intermittent stomach cramping.

So I suppose my first question takes into account the term 'remission.' What does remission feel like? How will I know that I'm in remission? How long will/could it take? Could this pretty much constant 6 month prednisone use be masking some more stuff thats going on in there? Could the remicade not be working? At what point would that become evident? Gah!

Sorry for the vent/stream of consciousness - any thoughts/advice/comments/whatever would be so very greatly appreciated. Thanks!

 

[DJW]

Hi and welcome.

Sorry your having trouble getting into remission.

I can answer the remission question. Its actually a tricky. Its very important to know that no symptoms does not mean no inflammation. Inflammation can simmer undetected. This untreated or under treated inflammation can cause serious complications down the road. When you've reached clinical remission life is pretty normal.

Sending you my support.

 

[Clash]

Clinical remission means lab work is normal and you aren't experiencing symptoms. Endoscopic remission implies that visually by scope inflammation does not appear. Histological remission is that there is no presence of active disease in the biopsies.

The goal should be all three with mucosal healing. Blood work should be done regularly to check inflammation markers. A fecal calprotectin stool test is another tool that tests for inflammation in your bowels only.

If you are experiencing symptoms while on pred and remicade the GI should be made aware. There are tests that can check the levels of remicade in your system to ensure it is at effective levels. The dose or duration between infusions can be be adjusted.

 

[dskath]

Thanks for your responses, they are so very much appreciated.
Dr says that if I don't taper well they will do another scope and at that point decide whether or not to add Imuran in the mix. That seems really intense and scary to me. I'm not sure I like the idea of that option.
Are most newly diagnosed crohn's patients started on a remicade regimen/this course of treatment?
I've also read that using steroids and infliximab simultaneously does not promote mucosal healing. That seems like somewhat of a catch-22.

Sorry if these are silly questions...I'm not sure where else to dump all my anxieties about this!

thanks again,
dani

 

[Clash]

There are studies that have shown starting with the big guns like remicade can negate the need for future surgery. It is also deemed the top down approach. For a long time GIs used the bottom up approach moving to the next stronger drug as the one failed. Now, there are GIs that do bottom and others that do top down.

My son was dx'ed and went straight to remicade he later had to add methotrexate.

If you have concerns about your treatment strategy write them down and go over them with your GI. If you don't feel confident in what he is suggesting, then a second opinion may help you.