HealingWell
Search Close Search
☰

Remicade wearing off?

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/22/2017 3:27 PM (GMT -5)
Does anyone notice Remicade wearing off after about five weeks? I am on my second cycle of Remicade very eight weeks and am feeling like crap right now and I still have eighteen days to go before the next infusion. The same thing happened last time. How hard is it to get Doctors to shorten the time between doses?
Posted 12/22/2017 4:02 PM (GMT -5)
Hi

I can’t answer you question as I’m having my last loading dose in couple weeks so I’m pretty new to Remicade. I was wondering if you can describe your symptoms while Remicade is wearing off. Is it tiredness or gut issues? Or both/anything else?

There’s loads of people on four weekly doses so it shouldn’t ne too hard to get your GI to shorten it for you. Are they checking your antibodies for Remicade?

Thanks
Posted 12/22/2017 4:49 PM (GMT -5)
I've just passed my 3rd year on Rem. I found out that the doctor has kept me on the low end of the treatment.

Now that a MRI has shown scar tissue, and new activity, the doctor has decided to up the Rem to the high end of the treatment, to see if that will continue towards better health.

Also, the two fistulas I have are still seen, even though they don't give me much trouble

I find, that as long as I keep figuring out what indeed hurts me, when it comes to food and drink, then I can keep progressing to feeling better. Gas equals pain! I had to give up coffee, wheat(BEER), white sugar, any chemically drink etc.

I haven't had my first increased dose yet. But its going from 4 vials to 6. I hope I get that energy boost, like when you first start on it. Then at least I'll know that I have been lacking

good luck, i hope you feel better
Posted 12/22/2017 5:31 PM (GMT -5)
Thanks for the replies.
My main symptoms are extreme fatigue, joint pain and leg muscle ache. Like I mention before I went through this on about week five of my previous dose also. Every day the symptoms gets a little worse. A day or two after the infusion I am back to feeling normal.
I have been having blood work done prior to every dose but starting on my last infusion they switched me to every other time so on my dose on 10 Jan I will get one again.
Posted 12/22/2017 6:28 PM (GMT -5)
There is a test called the Prometheus test that measures the amount of Remicade in your body. It isn't covered by insurance usually so may cost a couple hundred dollars. But if you get it right before your infusion, then it can tell if you're out of Remicade or if it's there and just not working. I used to be the same way when I was on the regular dose of 5 mg/kg every 8 weeks. At 7 weeks I had NO Remicade left in my system, so we doubled the dosage to 10 mg/kg and I get it every six weeks. That made a tremendous difference.
Posted 12/22/2017 7:10 PM (GMT -5)
Scifigal2k Thanks for the info. I think I will bring up getting that Promethus test to my doctor. Seems to make the most sense.
Posted 12/22/2017 9:03 PM (GMT -5)
Getting the antibodies test is a very good idea. I wouldn't worry too much though, as many on Remicade will go to every 6 week infusions as opposed to 8.
Posted 12/23/2017 3:18 AM (GMT -5)
scifigal's very good.
I had similar issues. The tests all came back with normal. I gave it time, actually took like a full year to have this lessen. First we tried lowering the dose because the remicade level was rather high on the blood test. that didn't work so had the next one early but it didn't give me much relief. Finally just committed to giving it time and trying to find a pattern. because after a while it shifted to not being the last few weeks but being like the third week into it and lasting two weeks. it was really weird. After about a year it gradually diminished. I still have trouble with it at some point after each infusion but not usually as severe or as long.
Posted 12/24/2017 10:07 AM (GMT -5)
When I was on Remicade my infusions were every 4 weeks 10mg/kg. We tried every 6 weeks & that did not work. My gi said it is not a one size that fits all when it comes to dosing someone, it should be tailored to the individual patient's needs.
✚ New Topic ✚ Reply