What's going on with me

[Gutted]

Hey guys. I've been lurking here for a few months but I thought it was time to share. Looking back I probably had some symptoms as early as ten years ago. I was diagnosed with Crohn's in my descending colon and terminal ileum in February of '15 but I had been flaring for a year before that. After the colonoscopy I started on prednisone 60mg. It helped firm up my stool in the first week, but the pain never went away.

By May I had tapered down to 10mg, but my bowel movements started getting worse(3-5 a day, semi solid, some bleeding). I convinced my GI to get me on Humira in June, although he was convinced I was fine and didn't need it. I didn't mind the injections, but I didn't seem to get any therapeutic benefit. After the old GI stopped returning my phone calls I found a new doc in September.

In October my new GI started me on Remicade. I was kind of freaked out by the idea of an infusion, but the actual procedure wasn't that bad. I got some fatigue after the first infusion, but I though I noticed some improvement after the second (less pain, fewer bowel movements). It went back to baseline after a week and last Thursday the pain increased significantly(I'd rate it about a five or so). I've got my third infusion scheduled for this Thursday, and I'll call my doc tomorrow and see what she says.

I know there are other options (Cimzia, Entyvio, trials, etc.) but I guess I'm a little disappointed and frustrated that I'm not in remission yet. In addition to iron, a men's multivitamin, and a bunch of sleeping pills, I'm on a few Crohn's related supplements: turmeric, mastic gum, and DHEA. Thanks for reading and I appreciate y'all and this forum. It feels good to get all this stuff out there.

 

[Trysha]

Welcome to the form Gutted...
It will take a few infusions of Remicade for things to settle down a bit
Don't give up on it...it takes time
You need to be in touch with your GI while you're having the Remicade and she/he will have the experience of monitoring other patients
Feel better soon
Hugs and best wishes
Trysha

 

[Kero]

Defintiely talk to your GI if you are still experiencing pain on Remicade. They may have to increase your frequency of infusions and/or the amount you recieve. I feel your pain, I have been in a flare now for 2 years. I will be starting Remicade myself in the next couple of weeks

 

[Gutted]

.... I feel your pain, I have been in a flare now for 2 years. I will be starting Remicade myself in the next couple of weeks

Congratulations on the diagnosis; obviously not great news, but it's better than not knowing. I was undiagnosed throughout 2014; at least now we have some idea about how to treat it. Good luck on the Remicade. I took a book and some headphones and just tuned out for a couple hours and it was fine. Take care.

 

[ronroush7]

I hope you feel better soon.

 

[my little penguin]

You are still in the loading dose
Meaning some feel relief after one infusion
But lost take every bit of ALL three loading doses to stay at baseline
The drug has to be built up in your system this takes 6 weeks or three infusions
Ds actually started to feel better after 7-8 weeks so a week or two after the third infusion.
He never got to 8 week spacing of infusions
Needed them at 7.5 mg/kg every 6 weeks which is also a high dose

Humira is the same way except it can take 3-5 months to build up completely in your system to see if it's working

Good luck