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Crohn's Disease Forum » Treatment » Remicade/Infliximab » More Remicade = Lower Immune System?


03-03-2017, 08:49 PM   #1
Teaspoon
 
Join Date: Mar 2017
More Remicade = Lower Immune System?

I was diagnosed with Crohn's in 2003. I had a double bowel resection in 2007 and was prescribed Methotrexate and Remicade. I took 3 vials of Remicade for a few years then got increased to 4.

I've been running into an issue with frequent bowel obstructions caused from inflammation at my surgical sites and my doctor increased Remicade to 8 vials.

Now, since starting on Remicade in 2007, the number of colds, flues and infections I've gotten has been higher than normal. After my increase to 8 vials I've gotten sick at a much higher rate. In the past three months Ive been on 4 different antibiotics for varying infections. I literally feel like I've been sick for 3 months without repreave. I have a young family and I struggle to get up every morning.

Has anybody had any similar issues with increasing their remicade? I can't find any information online in regards to dosage. I'm meeting with my specialist in a few weeks and I'm considering asking my dose to be lowered and trying alternative medicines. Needless to say, I'm feeling very frustrated.
03-05-2017, 10:15 PM   #2
Tesscorm
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Hi Teaspoon,

Your experience is similar to what my son has been experiencing the last couple of years. He's been on remicade for four years now, the first couple of years, neither he nor I noticed any real difference with him catching more colds, infections, etc. He started remicade a few months before moving into residence and, throughout the first couple of years, he had roommates with flus, strep, even one who left because of mono but my son didn't get sick any more often than he had before remicade.

However, last year (over the winter), he had recurrent problems with bronchitis, flu, colds, etc. and he felt it took a long time to get over these illnesses. He blamed it on remicade but, given that we hadn't seen any difference the first couple of years on remicade, I took last year as just a 'bad' year. But, this winter has been the same as last... one cold after another, bronchitis and chest congestion that just won't go away. He's been to the local walk-in doctor a number of times as well as the ER to have x-rays, etc. done. It's never been anything serious but does upset him because he feels constantly sick and often has to miss out on social events, hockey games and not feeling well makes it so much hard for him to focus on studies.

Is it just another 'bad' year??? Or could the effects of remicade build over time?? I don't know. Regardless, although it doesn't really help you, at least you know someone else out there is feeling as you do.

As far as as dosage, etc. I don't know re 'vials' but my son's dosage is 5 mg of remicade per kg of his weight. He has infusions every six weeks. This has not changed in 4 years.

This is just for your 'reference', not sure how helpful it will be to you but... There are studies that show the optimal level of remicade in your system should be 5-8 'units' (can't remember what the measurement is when testing serum levels, ie mg?? ml??). Due to the repeat infections last year, his GI ordered a serum level test back in August. It shown my son was at 12. I asked if we could extend his cycle out to 8 weeks as he was over the 'optimal' level of 5-8 but his GI said 12 was not exceedingly high as he had a number of patients over 20. And, being at '12' gave a bit of cushion should my son need to delay an infusion by a few days. He did not feel that the level was high enough to be related to the repeated colds, infections, etc.

Not sure if any of above helps at all but, hopefully, provides you with a bit of extra info for your next apptmt.

Hope you're feeling well soon!
__________________
Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
03-05-2017, 10:23 PM   #3
my little penguin
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Please understand
Biologics DO NOT make you more susceptible to minor infections
Colds etc
However they do make you more likely to take longer to get over said colds
And
Make it easier to have opportunistic infections such as
Pneumonia showing up if you get the flu

Hand washing eating healthy and getting proper rest help a lot
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DS - -Crohn's -Stelara -mtx-IVIG
03-05-2017, 10:28 PM   #4
Teaspoon
 
Join Date: Mar 2017
I guess I should clarify a little bit. I actually pick up my own Remicade from the pharmacy before all my infusions, so I'm more familiar with the actual amount of Remicade I have. 8 vials is 800 mg of Remicade. I weigh 76kg, so I'm above 10 mg/kg.

I definitely know im not the only remicade user suffering with poor health. I'm interested in requesting a lower dose from my GI specialist. I wanted to find information about a correlation between the amount of Remicade in a patient and the condition of their immune system. In my head, the higher you go the more it would effect your immune system, but I could be wrong.

Regardless, I truly appreciate your lengthy reply. I hope your son is managing all the colds, flus and infections well enough! I was just in the hospital (again) on Wednesday with full body rash, fever, racing heart etc. Just another notch on the belt I suppose.

I'd love to hear if anybody else has had issues staying healthy with increased doses of Remicade!
03-05-2017, 10:44 PM   #5
Maya142
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My daughter has been on "high dose Remicade" for her juvenile idiopathic arthritis (she also has IBD). That is 20 mg/kg of Remicade every 4 weeks - so a very high dose. I was terrified she'd get more infections on the higher dose but honestly, she was perfectly fine. We didn't do anything special except have her wash her hands more.

She was in high school at the time and high schoolers are always sick, so she was around a lot of infections.

On the other hand, Imuran + Allopurinol did cause more infections for her - multiple throat infections, including staph. Also CDiff. So she was taken off that.
__________________
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
03-05-2017, 10:46 PM   #6
Teaspoon
 
Join Date: Mar 2017
I work IT for a school District, meaning I am surrounded by students from K to 12 all day long. And unless you haven't guesses it, I'm touching their keyboards and mice. So washing hands is definitely important.
03-05-2017, 10:50 PM   #7
Maya142
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Yes, definitely - we made her carry hand sanitizer with her. And wash her hands whenever she could and stay away from friends who are sick.

It's worth discussing with your GI if the dose may be causing the infections. If your IBD is under control, lowering the dose might be an easy solution.

However, we were always told the same thing about biologics and infections - they just make it more likely that you will get opportunistic infections, not regular colds. For example, pneumonia after having a cold.
03-06-2017, 10:28 AM   #8
Tesscorm
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Our GI told us the same re catching common colds, etc. - not more likely to catch but harder to clear. I suppose bronchitis is an opportunistic infection bcz that's what he always ends up with?? Your and my son's environments may play into it as well as you're both in contact with a lot of students/germs, which doesn't help.

One note that what I said abt the optimal level being 5-8 isn't 'written in stone'. I don't believe there have been a large number of studies confirming this and our GI also said it's the level 'believed' to be optimal but is really just a rule of thumb. And, as I said, once we had my sons level, he didn't believe 12 was high enough to be hvg an impact. I'm not sure tho bcz I also wonder if the length of time on remi may have an impact??

FWIW, two natural remedies that my son has found to help colds/congestion are honey in hot water/tea and inhaling eucalyptus oil (never ingest eucalyptus oil!). Of course, it just 'helps', unfortunately not a cure-all.
03-06-2017, 04:15 PM   #9
pdx
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My daughter has gone up from 350 to 400 to 500 mg of Remicade over the past 5 months, and we're definitely seeing longer-lasting infections now. She has been struggling to get over a cold for the past few weeks, and she has several little skin infections that are lingering. Her Crohn's symptoms are better on the higher dose, though, so we'll probably stick with it.

Her doctor is going to check her Remicade levels sometime this spring to see if we can drop back a little. That's something you might want to ask for. Our doctor aims for trough levels of 4-7, similar to the numbers that Tesscorm quoted.

Hope you can find a dose that works well without leaving you open to so many infections.
__________________
Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
03-06-2017, 08:24 PM   #10
aypues
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I'm on 10mg/kg every 4 weeks, which i've been told is the max dose for Crohn's. I started in September 2016 and have had one cold but no flus (had the quadvalent vaccine) and no other complications. I haven't been on it all that long but feel i'm not extra susceptible to infections. It is working great for the Crohn's so I feel it's worth it!
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