When I went they injected me with a dose of benadryl.  Just in case.  It sure did relax me.  It took up to two and a half to three hours to infuse.   Had a comfy recliner and a TV that played DVD movies.  So it was set up pretty well. 

Good luck.  I hope it works. 

I know they say it takes awhile to take effect.  But swear on my mother's grave I felt better when I left and it worked like a charm.  I was very sick when I started. 

Don't be nervous... Nothin to be nervous about.  

Richard. 

Love Remicade!! They will give you pre-meds as Richard said so all good!! The worst part for me was finding a vein. Happy infusion!

Hi,

I have had 4 Remicade infusions. The first 3 were @ 400 mg (based on body weight). After that I was scoped at the 3 month mark and when progress was determined to have happened, they bumped up my dosage to 900 mg and I am also now on Methotrexate which prevents excretion of Remicade.

I wasn't given ANY premeds nor were they necessary. I had no side effects. Many complain of fatigue the day of the infusion but I didn't have the slightest amount of fatigue at either 400 mg or 900 mg.

I am looking forward to my next infusion on May 4 as I continue to experience improvement in terms of the inflammation abating.

I would suspect the feeling of fatigue is mostly related to the Benadryl. Since you did not get it, you would not feel the effects of it.

I start Remicade next week, after being on Imuran a couple of weeks. The Imuran is supposed to help prevent anti-Remicade antibodies (which is pretty common, since it is not a fully humanized protein). Rather than nervous, I am excited, since it has been more than two months since I last took Cimzia, and my arthritis is coming on stronger now.

Jan

Jan,

The persons who experienced fatigue that I spoke to, and from my conversations with administering nurses, the anticipated fatigue I mentioned has nothing to do with Benadryl. It's from the infusion itself and usually hits late on the day of the infusion. This was reported by a number of persons in my CCFA support group and by nurses who gave me my infusions and issued the warnings knowing that neither I nor any of the infused patients with that Doctor received Benadryl, and by fellow patients in the Remicade Room.

This is not to say Benadryl may not be a prudent premed, but it's also not the cause of the fatigue from the infusion itself which I alluded to. I think it's just the reaction to being infused. But for me, there was ZERO impact on my energy levels.

By the way I do take Benadryl, every day at bedtime to get to sleep. And I felt no different at bedtime on my infusion days. Benadryl makes you drowsy. The fatigue I am referring to has been called "wipeout" fatigue by the persons I talked to that experienced that side effect, including other patients I sat with in my Doc's "Remicade Room", which is equipped with TV and DVR.

Like you I am looking forward to my next infusion which will be my 5th. I am scheduled to take a deposition later that day so I will bring the file with me and in the 2 hours of the infusion I will be fully prepped and ready for that deposition when I leave the Remicade Room that day.

Good to know CT! Maybe the short term fatigue in those individuals is from some temporary liver damage or load on the organ, since fatigue is a primary symptom of liver damage. I probably will have a hard time sorting symptoms out, since joint pain and fatigue is part of my daily symptoms already.

Still, I am not too concerned about it. At my infusion center, the protocol is to premedicate.

Jan

I looked forward to being injected with benadryl.  I slept through most of the infusion.  Otherwise I don't like benadryl.  But they used it just in case you had a reaction to the infusion.  It would pretty well wear off by the time I was leaving and could drive myself.  I never had any fatigue later in the day from the infusion. 

Richard 

One other thing I should note is that my first 4 infusions of Remicade were without 6MP or Methotrexate in my system.  These are drugs that are designed to enhance Remicade or keep it in your system.  With the upcoming 5th infusion, I will have 2 months of Methotrexate in my system built up to prevent the rapid excretion of Remicade.  So my 5th infusion, which will be my second at 900 mg, may provide more benefits than the prior infusions.

Jan,

I think you are right about the infusion causing some kind of overload on your liver that causes onset of late day fatigue with some patients.  A friend of mine who is taking Humira told me he felt the same way after his Humira injections.  This will probably be explained to you when you go for your first infusion.  I recall the day I had my first infusion I was in the Remicade Room with a younger guy in his 30s and he told me he was totally wiped out late in the day of his first infusion.  However, like I said earlier, I had 4 infusions, the last at 900 mg, and did not notice any side effects whatsoever.  Despite this, there was a nurse in the room monitoring my vitals continually during the 2 hours of my infusions.  Each of my infusions was almost exactly two hours from start to finish.  I timed them all and it was within 5 minutes of 2 hours plus or minus every time.  Make sure that once you are pricked you hold your arm at a proper angle so the IV flows freely- I assume as an RN you knows this, but 2 hours is a long time and you can get distracted.  One of my nurses scolded me because I was working on a legal file and not paying attention to the IV and at some point the IV slowed up which she noticed and I didn't and she reminded me of proper arm positioning.  It's nice having an attentive nurse there for these reasons because I use the Remicade time to work.  Others in the room were watching that morning TV show with Kelly Ripa and Michael Strahan, but I usually do not pay any attention to the TV and just do my work.

My veins are bad, and only one arm has anything accessable (right arm), so I am assuming I have it in an inconvenient spot.

Jan

Ok, so first infusion was yesterday. It took about 2hrs 15 min. The nurse gave me a Claritin, not Benadryl, to avoid sleepiness and tylenol as some complain of headaches. Well I did have one after the infusion, but after eating lunch I was fine. I did not experience fatigue later that day, nor did I feel any different today too. This isn't my first biologic, so perhaps my body is used to it. 

CTBarrister- the doc more then doubled your dose, can you remind us why? Did you feel any different with this big jump? Is your infusion schedule every other month at this point? I will go back in two weeks for my second infusion. 

Brewbirds,

My dosage of Remicade was increased from 400 mg to 900 mg after the first 3 infusions when a scope at the 3 months mark, after the first 3 infusions, showed that the inflammation in my J Pouch had essentially cleared up, but that the inflammation above the J Pouch in the neoterminal ileum had not improved significantly.  It had been my GI doc's plan all along to scope me at the 3 month mark after starting the infusions to determine progress or lack thereof.  He doesn't want to fool around- his plan B was to start me on Entyvio immediately if the Remicade wasn't working as per what was seen on scope.

However, the scope proved the Remicade was working, plus my very mild nighttime incontinence, which had essentially become a daily occurrence in the weeks prior to the first infusion, had stopped immediately after the first infusion.  So I knew it was working to some degree.  My GI also changed up the regimen by putting me on Methotrexate 12.5 mg per week with that 4th infusion at which I was bumped up to 900 mg.  My Doc had considered putting me on 6 MP from the start, and had I not had thyroid cancer surgery and radioactive iodine at the end of last summer, he would have.  But when my infusions started in November, he didn't want to mess with my cancer treatment, so he gave me naked Remicade rather than Remicade with an accompanying medication.

Regarding the inflammation above the J pouch, that is why he increased my dosage.  He said that inflammation is "tougher", and it's also some evidence that I have Crohn's Disease, although my prior GI's theory was that the inflammation in the neoterminal ileum, which is just above the pouch, is due to "backsplash stool" and SIBO resulting from that condition, coupled with a narrowing of the canal at my J Pouch inlet.  The plan is to scope me again at the end of June, when I will have 2 infusions at 900 mg under my belt, as well as almost 4 months worth of Methotrexate.

The inflammation I have above the J Pouch wasn't always there.  We first saw it around 10 years ago.  There was no evidence of it the first 15 years or so after I got my J Pouch.  This is why Dr. O, my prior GI who left Yale a couple years ago, thought it was from backsplash stool/SIBO.

Brewbirds,

To answer your second and third questions:

(2) I didn't have ANY side effects after any of my infusions regardless of the dosage

(3) My second infusion was 2 weeks after the first.  The 3rd was a month after the second.  He told me 0-2-6 on the first 3.  I am now every 2 months.

Thanks for all the great information! I have a feeling my dose will increase in time too so that's reassuring to know. I'll have a scope later in summer. Praying for a miracle till then!!

I had my first infusion yesterday. I was premedicated with Claritin and Tylenol oral, and IV hydrocortisone. All went well. Other than boredom, no complaints. Brought my iPad and caught up on reading, email, surfing.

I had 5mg/kg, seems like the standard start dose.

Jan