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Starting Remicade

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Ulcerative Colitis
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Posted 8/5/2015 11:15 PM (GMT 0)
I will be starting Remicade soon, and I am pretty nervous about it. I have a three month old daughter and I work full time as a Medical Assistant for a doctors office, so I come into contact with sick people pretty frequently. Does anyone have any advice on how to not get sick? And what were some of the symptoms you experienced when you started Remicade? I want to kind of know what to expect. Thank you!
Posted 8/6/2015 12:50 AM (GMT 0)
It has pretty minor side effects just make sure to wash hands with soap and water
Also be careful what you eat. Don't eat from little kids and be cautious. I am on it plus imuran
And I was on steroids and I have not noticed getting sicker than usual
Posted 8/6/2015 1:53 AM (GMT 0)
I've been on it since 2009 and have not been sick more often. I don't even remember the last time I had a cold. I'm an advanced practice nurse and work hands on with patients that are in contact precautions such as MRSA, VRE, cdiff, etc. Yesterday I did have to excuse myself from taking care of a TB patient. Those are off limits for us.

The only side effect I had was during the induction phase which was a headache. The doctor that initiated my remicade never mentioned adding a immunomodulator to prevent antibodies. I switched to an academic GI doc last November and asked him about adding a med because of that and he said it wasn't necessary.

Dikid makes a good point...wash your hands and if you encounter a really sick patient in the office, maybe consider wearing a mask like what is worn in the OR.

I hope you do well with remicade. It was truly a lifesaver for me.
Posted 8/6/2015 3:34 AM (GMT 0)
I started Remicade in January; took 3 doses.

The good news: no discernible side effects of any kind (aside from low pulse and blood pressure during the actual infusion).

The bad news: no discernible desired effects either. No improvement. After 6 weeks, my GI said give it up, it's not working for you.

Basically, Remicade had no effect at all. Perhaps not typical, but this is a possible outcome.
Posted 8/6/2015 3:52 AM (GMT 0)
I started Remicade back in June. So far, no side effects that I've noticed. It actually allowed me to do a super quick taper from prednisone. I was on 60 mg oral for the entire month of June and I just had my one week anniversary of being prednisone free. No resurgence of UC symptoms at all.
Posted 8/6/2015 7:19 AM (GMT 0)
I've been on it since April and had 4 infusions. It has reduced my symptoms dramatically, though I am not in remission yet. I still have urgency, 4-5 bathroom visits per day but all other symptoms have (almost) gone.

I have a case of sinusitis that I can't seem to get rid of. I attribute this to either Remicade or Azathioprine which I'm also on. I'll take it over blood and mucous any day of the week.

From what I have read, most side effects tend to manifest at the time of infusion. The nurses where I have mine tell me that allergic reactions are very rare and that the drug is generally very well tolerated. I have had no other side effects other than the sinus stuff.
Posted 8/6/2015 8:03 AM (GMT 0)
My only side effect was the feeling of euphoria when I realized that after 6 months of bleeding, it had finally stopped. :) I am not in remission yet. Have had a few scary set backs but it has been the only drug that i have taken that has reduced symptoms without side effects. I am counting down the days to my 4th infusion. I have consistently felt better 2-3 days after each infusion. Unfortunately, it seems to wear off quicker with me.

Now that I am on imuran too, I am experiencing terrible nausea and headaches. But that started as soon as I started the imuran so I doubt very much it is the remicade.
Posted 8/6/2015 1:53 PM (GMT 0)
Thank you all so much for your input! I feel so much better about starting this now! 😊
Posted 8/6/2015 4:38 PM (GMT 0)
good luck and update us
when do you start?
Posted 8/6/2015 5:01 PM (GMT 0)
Thank you, I will! :) I haven't received an actual date yet, but they told me it should probably be next week. I am hoping to hear an exact date today.
Posted 8/6/2015 5:13 PM (GMT 0)
Remicade put my uc into remission, I hope it works well for you, as well. A remicade infusion takes 2-3 hours, it's quite boring so bring entertainment (e.g., a book, ipad, etc). You should be premeditated with an antihistamine (benadryl or claritin) and Tylenol. The nurse weighs you, sets an IV (just a tiny needle prick), and periodically checks your temperature, blood pressure, and adjusts your IV drip rate. The nurse remove it, put a bandaid on, and away you go. Some report being a little sleepy during or after the infusion process (benadryl makes it worse, I opt for claritin instead).
Posted 8/6/2015 5:38 PM (GMT 0)
Remicade put my UC into remission as well...for about a year. During this time I was also on 6mp. Then I flared up for about a month (used rowasa enemas nightly for several weeks which helped get me back on track). But a month later I developed severe eczema and psoriasis which my GI believes is caused by the remicade or remicade + 6mp combo.

While on Remicade, I don't believe I got sick more frequently, but when I did come down with a cold or any type of infection, it took my body a much longer time to bounce back.

Good luck.
Posted 8/6/2015 7:05 PM (GMT 0)
Ipoop, was the Claritin IV? I would rather premedication with antihistamine and Tylenol over IV steroids
But I can't drive when on Benadryl
Wondering if they can switch that
Posted 8/6/2015 7:14 PM (GMT 0)
Nope, I take over-the-counter claritin and Tylenol pills 45 minutes before each remicade infusion. My infusion center gives me an appointment card, claritin, and Tylenol pills for the next visit.
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