Crohn's Disease Forum » Treatment » Remicade? Experiences? Opinions?

01-22-2017, 08:27 AM   #1
Join Date: Jan 2017
Location: Miami, Florida
Remicade? Experiences? Opinions?

So I found out on Friday that I have crohns. My doctor said I was a 7 out of 10. I'm not really sure what that means.

Anyway, she wants me to start Remicade right away. I'm still processing that I have crohns and am in shock. I haven't had time to do much research but the little I've read about remicade scares me.

I''m a 42 year old mom of three. I'm someone who has always been healthy, a runner, decent shape, and rarely takes any medicine. I rarely take even Tylenol. This is a serious drug.

What have been your experiences with Remicade?
01-22-2017, 08:46 AM   #2
Ricky_V's Avatar
Join Date: Jan 2016
Location: Columbus, Ohio
My oldest daughter has had a great experience Remicade. It would definitely be the first biologic I would try. Infusions every 8 weeks are better then painful Humira shots in your stomach. Couple of other items to do:

1) Make sure live virus immunizations are up to date
2) Make sure the doctor prescribes a immunomodulator like 6mp to help prevent antibody generation
3) Take supplements... see list below
4) Make sure you have good insurance... you going to need it

Renee (23) dx 9/15 - Status: Feeling Good

Current Meds:
Remicade 7.5mg every 6 weeks
6MP @ 50mg /Day
Vitamin D2 50000iu /Weekly (Prescription)

Vitamin D3 1000iu /Day
Organic Apple Cider Vinegar

Failed Meds:

Gall Bladder removed 4/16


Julia (21) dx 6/08 - Status: Remission 9yrs
Current Meds:
6MP @ 100mg /Day

01-22-2017, 08:49 AM   #3
Forum Monitor
ronroush7's Avatar
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Everyone reacts differently. I took myself off of it because of the expense. Without the Remicade, i had a flare and needed surgery. A few months later, my doctor started me back on it. By that time, i developed a reaction to it and had a lesion on my scalp. There are others here who have been on it for years.

Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
01-22-2017, 08:23 PM   #4
Senior Member
Join Date: Mar 2013
Location: San Diego, California
First biologic I tried was Humira - it did nothing for me.

Then I switched to an IBD specialist and she put me on Remicade, plus Cellcept (similar to 6MP, azathiprine, methotrexate). The pain IMMEDIATELY went away and I started to feel better. My hemoglobin was 10.1 and now I am 14.5. Had to do a few heavy duty iron infusions to fix the anemia too, but really the Remicade is what stopped the heavy blood loss I was chronically having. Now I am getting a higher dose, 10mg/kg, every 4 weeks, which you may also need if your disease is a 7/10. See how it goes after the loading doses, and check your drug concentration (Anser IFX test) a week to 10 days before your 4th infusion (should be 8 weeks after your 3rd loading dose). Your doctor will monitor this. I would also recommend seeing an IBD specialist (not a regular GI generalist). I have had many GI generalists that were out of their depth with an aggressive and complicated disease like Crohn's.

The expense of Remicade is high. I hope you have good insurance. You may be able to switch before the end of the month for a Mar 1st start date if not with an employer based plan. There is a patient assistance program from the manufacturer called Remistart, which covers your copay for the drug itself, not the infusion center fee to put it in you and monitor your vital signs. Also, hospital infusion centers tend to be the most expensive. If you can ask the doctor's office for a referral to a non-hospital based infusion center (like a home infusion pharmacy off site) it would be much less for the infusion cost, but the drug cost will be similar.

I Highly Recommend it!!

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