Been having good results from pred, until today

[Tyler9]

Hi everyone

I was diagnosed with crohn's about 3 weeks ago. This was after months of ignoring diarrhea, blood/mucous in the toilet, and abdominal pain/cramps. Anyway, I was finally in so much pain that I went to the hospital to get checked out, and after a cat scan and a colonoscopy got diagnosed with crohns in my small intestine and a bit in my large intestine.

My GI put me on an 8 week course of prednisone, starting with 40mg and tapering down 5mg weekly. I thought this was the solution to all my problems, as within 2-3 days I was feeling almost back to normal, pre-crohns. Got back in the gym, have been eating a low-residue diet, feeling pretty good overall (no diarrhea or stomach cramps), except for trouble sleeping thanks to the pred.

Anyway, yesterday I began to get stomach cramps again, and they have carried over into today. They werent too serious, but I just went to the washroom, and while my stool was solid, I had a significant amount of blood on the toilet paper when wiping, which I hadn't experienced since starting the pred.

Im pretty worried about this, as I now feel like I am going backwards, I obviously know I have to let my doctor know, which I will tomorow. I am not even sure what my question is to be honest, I think I am just venting and wondering if anyone has had similar problems, and how they handled them? Just want to feel better, Im in my last year of University and am so busy between trying to get good grades for grad school, and trying to keep up with my social life, however with crohns I feel like every part of my life is suffering because all Im thinking about are these stupid stomach problems.

Just looking for some advice, or wondering what other medicines people have taken apart from steroids for their crohns. I really dont know much about this disease, but guess Im gonna have to start learning if I have this for life.

 

[Clash]

This happens often with Pred as someone starts to taper. The GI may decide to up your pred a bit and taper more slowly. A maintenance med is usually started while on pred since it take those meds time to build up. Maintenance meds include meds like Imuran, 6mp, methotrexate or the biologics like remicade or humira.

Pred is kind of like a rescue med it is used to get the inflammation under control but is not intended for long time use.

 

[24601]

It's really not uncommon to have your symptoms flare up again as you reduce the dose of pred. When that happens most people find that they need to go onto some other meds to get the disease under control and keep it under control as it is a really bad idea to be on steroids long term.

Your options are possibly a biologic like Remicade or Humira to get your symptoms under control quickly plus usually an immunosupressant such as azathioprine, 6mp or methotrexate.

Some people find a prescribed liquid diet (like Modulen) a good alternative to steroids to get a flare under control, but you may well need meds in the form of a biologic and immunosupressant too.

There are other options but those are fairly standard treatment combinations. Definitely talk to your doctor about your recurrence of symptoms and see what they suggest for getting them under control and hopefully keeping things that way. Best of luck.

 

[Tyler9]

Thanks both of you for replying.

I guess I figured I would have problems again once the pred started being tapered, just didn't think it would be so sudden. Was hoping to get off this medicine ASAP as I really don't like what it can do to your body. Hopefully I can find a good maintenance medication that can keep the symptoms away without the need for prednisone.

Anyway, felt good just to rant, been trying not to let this take over my life, and have been trying to live normal, but it can be hard. Hopefully I can get this under control soon.

 

[Clash]

Just remember it can tak Imuran or 6mp a few months to reach therapeutic levels, methostrexate 6 weeks, remicade 6 weeks and humira 12 weeks so it is important to discuss maintenance meds with your GI early on.

Good luck

 

[Dianne Dunne]

For Tyler9, I have been living with Crohn's over 15 years now and as I get older it seems to get worse. I've been treated with high doses of prednisone while I was also taking remicade and still had symptoms that put me in the hospital 3 1/2 weeks in March 2014 and another 2 weeks over xmas because my immune system was so compromised I contracted c-diff. Good news though, saw on call Gastroenterologist and he took me off prednisone which was causing me all kinds of side effects, and put me on Entocort 9mg and I still have symptoms But am pain free. No more prednisone, no more Remicade I had horrible side effects from that too, but Entocort works by going straight to your gut and goes to work, It doesn`t get absorbed into the blood stream and mess around with your liver, check it out and decide wether or not to make the switch and discuss it with your Dr. I wish you the best of luck it`s a horrible disease we have to live with, and it affects every part of our lives in usually the most embarrassing of ways. Don`t let it stress you out, that only makes it worse, but seriously there are drugs that help and Entocort is the best thing that's come along for me in years. I'm super sensitive to side effect and this drug only has two, headaches and nausea, and both a few and far between. I hope this helps, best of luck, Dianne

 

[Tyler9]

Thanks for the reply Dianne, I called my GI and let him know what was going on, and have an app. next week. I will definitely ask him about Entocort.

Yea Im trying not to stress out over it too much/let it interfere with my daily activities but Im feeling pretty sick right now and I have sooo much schoolwork to get through in the next couple months, it sucks.

 

[24601]

Just something to consider if your doctor suggests Entocort, since you have Crohn's in your small intestine do ask exactly which parts of your small intestine have signs of disease. Also which part of your colon too actually!

Entocort is indicated for "treatment of mild to moderate active Crohn's involving the ileum and/or ascending colon."

So if you have disease in your duodenum or jejunum, or disease in your colon other than ascending, then this might well not be the right choice for you because the Entocort will not be treating disease in those areas.

While it works for some people (Diane, I'm glad it's been so good for you!) it is not without side effects (not quite the magic bullet doctors thought it was back in the 90s when it was introduced) and should not be used long term so you may find you need other meds as well to maintain remission.

 

[Tyler9]

If I remember right, the inflammation is right where the small intestine meets the large intestine (ileum I think?), and then he said a little bit at the beginning of my large intestine as well.

But anyway thanks for the heads up! This disease is very confusing at the beginning, so many medications/different types of crohns, tough to get a handle on everything.

 

[Clash]

Agreed about entocort. Also it is indicated for 3 months:

Following an 8 week course(s) of treatment for active disease and once the patient's symptoms are controlled (CDAI less than 150), ENTOCORT EC 6 mg orally is recommended once daily for maintenance of clinical remission up to 3 months. If symptom control is still maintained at 3 months an attempt to taper to complete cessation is recommended. Continued treatment with ENTOCORT EC 6 mg for more than 3 months has not been shown to provide substantial clinical benefit.

http://www.rxlist.com/script/main/mobileart-rx.asp?drug=entocort&monotype=rx-ids&monopage=3

So it is not a med indicated for long time use.