Remicade Wearing off...FAST

[Shelley327]

I've been on remicade now for almost a year at intervals of 6 weeks after being diagnosed with Crohn's last summer. It works amazingly!!....for two weeks. It honestly feels like I'm in remission. I feel so great and so normal! But then I notice the deterioration.

I had a colonoscopy at the end of June (you may remember my worried post lol) and I looked terrible, no improvement since my diagnoses. But no reason that would call for surgery. (I had the colonoscopy RIGHT before an infusion too, so I was at my worst)

I've been in touch with my doctor every time I start feeling like crud and we finally got to the bottom of it this week. I have no antibodies, so the medicine does work, and it works very well. Somehow my body just processes it out? When I had my bloodwork done before my last infusion there was not a single evidence of any remicade in my system.

I go from being symptom free each month to right back with my severe crohn's and all the pain, bleeding, and bathroom runs that goes along with it. It's a very dramatic change. I also start loosing weight, so I'm at a constant battle to push calories while I feel great.

They doubled my dosage for the last two infusions and now I'm going to start getting it every 4 weeks instead. Hopfeully that will alleviate my last two weeks of misery. Really looking forward to this!!

I guess I'm just wondering if anyone relates to this? (please tell me someone does :confused2 And how have your doctors dealt with your treatment plan?

This roller coaster ride is driving me a little nuts lol

 

[Liquid Bacon]

I'm so glad the Remicade is working... partially, anyways! Hopefully doing the infusions closer together will help. About 6 years ago I had to change my Humira from bi-weekly injections to weekly because my scopes didn't look as good as my GI was hoping.

 

[dave13]

maybe post this in the remicade club for better exposure.

 

[CrohnsMom2]

Hi Shelly327
So glad Remicade is working well for you. I just wanted to let you know that my son had a very similar experience with it and had to have his infusions closer together. Over time it seemed like the Remicade built up in his system and the doctor pushed them back again to 5 weeks apart, then 6 and he eventually was getting the infusion every 8 weeks. Don't be discouraged about it not lasting as long as they say it should. As you know everyone's body is different. Good luck with it!

 

[Shelley327]

well I'm glad to hear this isn't something completely abnormal haha. My GI doctor, who is great, has been calling me pretty frequently trying to figure out what's best for me. He really does believe this 4 week thing will do the trick and like you mentioned he's thinking I may be able to move back to 6 weeks a while down the road. *fingers crossed*

The SSI treatment looks very interesting! I'm going to have to look into that, seems like a promising new treatment.

 

[my little penguin]

Are you on remicade by itself or with other meds?
Sometimes remicade/humira needs a boost-
Immunosuppresants ( 6-mp or Mtx) are one way or add in 6-8 weeks of EEN ( formula only )- boost , ensure or peptamen .
I know more than a few kiddos with Ibd that did that when they maxed out on 10mg/kg and every 4 weeks.

Other diseases allow up to 20 mg/kg every 4 weeks so there is room to go up .

Hope it works soon
DS had to stop remicade due to two allergic reactions .