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Crohn's Disease Forum » Parents of Kids with IBD » Remicade - metabolism, degree of impact on immune system


10-05-2014, 09:11 PM   #1
Tesscorm
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Remicade - metabolism, degree of impact on immune system

Couple of questions on remicade

S's GI had started S out on an 8 week cycle, however, once S finished his three loading doses, prometheus test was done the morning of his first 8 week infusion. Serum levels showed no remicade left in his system so we moved to a 6 week cycle. Repeat testing at 6 week infusion showed adequate levels. But, reading back on my notes, his GI previously mentioned we might possibly be able to move to a 7 or 8 week cycle again (unfortunately, I don't remember why this was discussed??). My question is why/how would this be possible? We didn't tighten S's cycle because he was having symptoms or he was having difficulty attaining remission?? It was simply because there was no remicade left and my understanding is that this is caused by a person's metabolism. Is it possible the rate he metabolizes the drug would change?

Second question (a bit related to above)... while nothing is booked yet, S is planning on going down south (Dominican Republic, Cuba, etc.??) during February's school break. I just booked his upcoming infusions until April. The February infusion likely falls on the day before he will be travelling south. And this is now worrying me. Is your immune system the 'most' suppressed immediately following your infusion? Or does his current 6 week cycle keep his immune system at a consistently/nonfluctuating suppressed level? I realize serum levels lessen as you move away from your infusion but how reactive/sensitive is your immune system to the schedule? Do you think it would be wise to move that appointment up by one week??

Thanks
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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

Last edited by Tesscorm; 10-05-2014 at 11:08 PM.
10-07-2014, 05:32 PM   #2
kimmidwife
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Tess,
I am trying to do some research for you. I think as long as you are on remicade you are considered immunosuppressed. Here is the first article I found, I am still looking,
http://www.drwisetravel.com/immunosuppressed.html
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
10-07-2014, 05:35 PM   #3
kimmidwife
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This one is a little scary to read,
http://www.rxlist.com/remicade-drug/...recautions.htm
10-07-2014, 05:40 PM   #4
kimmidwife
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Everything else I found was pretty uch repeating what the other two say. So basically the bottom line is as long as you are getting remicade you are immunocompromised. There may be some recovery of the immune system towards the end of the cycle but that might be minimal.
10-07-2014, 06:08 PM   #5
my little penguin
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METHODS: The study population comprised 38 patients treated with infliximab at a mean dosage of 3 mg/kg (20 RA patients; 18 AS patients; 23 RA controls (treated with disease modifying antirheumatic drugs other than anti-tumor necrosis factor-alpha; and 17 healthy controls). Split-virion inactivated vaccine containing 15 mug hemagglutinin/dose of each of A/New Caledionan/20/1999 (H1N1), A/Wisconsin/67/2005 (H3N2), and B/Malaysia/2506/2004 (M) was used. Patients treated with infliximab were divided into 2 groups: 22 were vaccinated on the day of administration of infliximab, while 16 received the vaccine 3 weeks after infliximab. Baseline and 4- to 6-week clinical assessment of disease activity included erythrocyte sedimentation rate and C-reactive protein for all patients, the 28-joint disease-activity score for RA patients, and Bath Ankylosing Spondylitis Disease Activity Index for AS patients. Hemagglutination inhibition (HI) antibodies were tested by a standard World Health Organization procedure. Response was defined as >or=4-fold rise in HI antibodies 4 to 6 weeks after vaccination, or seroconversion in patients with a nonprotective baseline level of antibodies (<1/40). Geometric mean titers (GMT) were calculated to assess the immunity of the whole group.

RESULTS: At baseline, RA patients and controls had similar occurrence of protective levels of HI antibodies and GMT, while AS patients had lower levels reflecting lower rates of previous vaccination. Four weeks after vaccination, a significant and similar increase in GMT for each antigen was observed in all groups (P < 0.004) except in the RA-infliximab group, vaccinated 3 weeks after administration of infliximab, in whom the increase in GMT was not significant for H1N1 (P = 0.12) and H3 (P = 0.06). AS patients demonstrated an increase in GMT, independently of the time of vaccination. The percentage of responders was similar in all groups. The response was not affected by variables such as age, gender, methotrexate, or prednisone use. Parameters of disease activity remained unchanged. No adverse effects other than injection site pain were recorded.
The effect of infliximab and timing of vaccination on the humoral response to influenza vaccination in patients with rheumatoid arthritis and ankylosing spondylitis.

AuthorsElkayam O, et al. Show all Journal
Semin Arthritis Rheum. 2010 Jun;39(6):442-7. doi: 10.1016/j.semarthrit.2008.12.002. Epub 2009 Feb 26.

Affiliation





From:
http://www.ncbi.nlm.nih.gov/m/pubmed/19246078/
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10-07-2014, 06:18 PM   #6
my little penguin
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So if it doesn't affect when you get the flu shot
I wouldn't think it would matter the time difference
Per DS medical records-he is immunosuppressed .
Period regardless of time frame

As far as levels
These can change since it depends on how fast your system is "fighting" against the meds.
Kids tend to burn through faster since their immune system is still in a state of flux .
Adults less so .

I know a lot of kids who get the levels checked more than once since they can be processing it differently.
That said I wouldn't expect it to get better but maybe.
10-07-2014, 07:02 PM   #7
Mehita
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Interesting.

At DS's last Remi infusion our nurse told me the ideal time to get a flu shot with his eight week schedule is two weeks after Remi, but four weeks before his next dose, which left us with a two week window. Key word is "ideal" time. I'm not sure how it works with a tighter Remi schedule.

As a follow up to that, when we travelled internationally this summer, we left two weeks after his last infusion and his GI said that timing was the best for travel on germy airplanes. Had it been any earlier or later, he might not have approved the travel.

I guess my understanding was that kids feel pretty good the first couple weeks because there is some great anti-TNF battles going on. As the eight week cycle progresses, and the med gets used up, so to speak, the overactive immune response starts happening again, hence the need to reload with Remi... and that would explain why there is that "ideal" time in the middle.

No?

And... when we asked about DS going to Costa Rica next summer, it turns out that he'd be due for Remi the day they're scheduled to leave, and his GI was pretty uncomfortable with agreeing to let him go. He said he could, but it wouldn't be the best time.

???
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- added Methotrexate/Folate March 2016
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10-07-2014, 07:21 PM   #8
Maya142
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We go to India every summer and it's never been an issue - we have carried Humira, Enbrel, Simponi and scheduled Remicade the day before we left (that I remember specifically because it was this summer! M is on a very high dose too - above 10mg/kg and every 4 weeks) at least once. We've never had any doctor tell us that it would be an issue, just to take the regular precautions for infections.
I do worry about airplanes, but we travel quite frequently, and I don't think either of the girls has come down with anything more than a cold.

We also have never been told anything about flu shots, we just get them any time!
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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
10-07-2014, 08:34 PM   #9
Tesscorm
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Thanks all for weighing in.

I think, when/if S decides to go away, I will probably move up his infusion by a week. I hate to give it more often than he needs and not sure a week will really make much of a difference but, I'm thinking there seems to be some immediate impact on the immune system at infusion and as this wears out, the immune system begins to strengthen again. Would feel slightly better if his immune system is a bit stronger if he goes away.

We were also told to have flu shot a couple of weeks before or after infusion. So, makes sense it's when immune system is a bit stronger and enough time for the vaccine to work before immune system is lowered by the next infusion.

(Kim... only skimmed that second link... don't want to pull my head too far out of the sand! )
10-09-2014, 06:32 PM   #10
Jane and Nick
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The second link is very scary. I believe we as parents need to educate ourselves, but goodness some times ignorance may be bliss.
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10-21-2014, 02:32 PM   #11
crohnsinct
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At O's GI appointment today he mentioned getting another levels test. She just had one 6 months ago so I questioned why. He said that when people are inflamed, they tend to soak up the Remicade like crazy therefore needing a higher dose...this along with metabolizing the med...when inflammation is minimal, they tend to have higher trough levels and they can then decrease the Remicade. FWIW, he like sto see a trough level of 4-8...anything lower runs a risk of building antibodies. Higher is o.k. but he likes to reduce meds as much as possible...I knew I liked him for a reason.
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
10-21-2014, 06:42 PM   #12
Tesscorm
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Thanks CIC! S's GI apptmt is coming up, so I'll ask him about this. But makes sense as to why he mentioned we could extend at a later time - going with the assumption that inflammation is low at the 'later' time.
10-22-2014, 01:12 AM   #13
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Couple of questions on remicade

Second question (a bit related to above)... while nothing is booked yet, S is planning on going down south (Dominican Republic, Cuba, etc.??) during February's school break. I just booked his upcoming infusions until April. The February infusion likely falls on the day before he will be travelling south. And this is now worrying me. Is your immune system the 'most' suppressed immediately following your infusion? Or does his current 6 week cycle keep his immune system at a consistently/nonfluctuating suppressed level? I realize serum levels lessen as you move away from your infusion but how reactive/sensitive is your immune system to the schedule? Do you think it would be wise to move that appointment up by one week??

Thanks
I wouldn't worry too much about this... I used to travel extensively overseas in developing countries while on remicade and would always schedule my infusion 2-3 days before I left. Unless S is one who has side effects immediately after infusion (frequently reported on this forum including fatigue), it shouldn't be that big of a deal. In close to a year spent out of the country traveling in the last seven years (including to Myanmar, Thailand, Laos, Philippines, Vietnam, China, Hong Kong, and most of Europe) I've been on either Remicade or Cimzia. And in all those trips, I've been ill three times. Once in Cambodia (6 weeks into a 12 week trip, or two weeks before I was "due" for Remicade) with a stomach virus, once in China (3 weeks after infusion) with what I called "the Chinese cough" (which tons of local Chinese plus a number of fellow travelers also had), and once in the Philippines (food - six weeks after infusion). I would not attribute any of these illnesses to being immuno-compromised.

I just had a week off from grad school and went to Mexico (Mexico City & Oaxaca). I'm on Cimzia now, and I injected literally five minutes before I left for the airport. Had a great week, street food at least twice a day (street carts are often more sanitary to restaurants in developing countries where the kitchen is hidden from view), etc. I'm with the poster who travels to India annually; it shouldn't be an issue.
10-22-2014, 03:03 PM   #14
Tesscorm
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Thanks Northwesterner! Reassuring to hear!

Keep enjoying your travels - sound like you've had some great trips so far!!
10-22-2014, 07:44 PM   #15
kiny
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anti-TNF affects diseases differently, just because it has a short halflife doesn't mean the effects of infliximab end when infliximab is removed from the system

the biggest proof of this is that especially kid's increased risk of T cell lymphoma is still present months after infliximab is discontinued

many of the risks of infliximab aren't directly related to immune suppression, some have to do with changes in lymphocyte populations, there is usually a balanced production of lumphocytes, some are helper cells, others cytotoxic, how those populations change is something that is very hard to measure because the inflammation itself causes changes. What we do know os that infliximab leaves you vulnerable to mycobacterial infections, since infliximab affects especially T cells, like tuberculosis, which is why they are forced to screen for latent TB with a mantoux test before they can begin infliximax in patients

eventually the effects of infliximab would lessen, but you do have ppl who have been on imuran for years and have lymphopenia years after they stopped, this can in crohn's disease be explained sometimes as the result of inflammation, but in other ppl it is attributed to medication, it's not known why their immune system doesn't recover
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