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Crohn's Disease Forum » Parents of Kids with IBD » Stephen... Remicade now...


 
03-14-2013, 09:05 AM   #1
Tesscorm
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Stephen... Remicade now...

Starting a new thread on Stephen's experiences with Remicade (hopefully, they'll all be good!!!)

So far, he's had two infusions and all has gone well. No reactions during infusion and no side effects afterwards.... I think... he seems to look a bit pale immediately after the infusion and it seems he's complained of being a bit more tired lately but not sure if it's related to the remicade or if it's that he's started working full time (plus 1 hr commute) but is only just beginning to adjust his 'teen' late night hours. (Think he's beginning to get why us 'old folks' go to bed early! )

But, all in all, all seems to be going well.

Can someone help me with a couple of questions?

Are allergic reactions related to the build-up of antibodies? If he begins to build antibodies, does this make him more likely to have a reaction during infusion (or at any time)?

And, how will we know if he's building antibodies? Is this tested regularly in bloodwork done at every infusion or is it only the Prometheus test that shows antibodies.

If you develop antibodies, is it possible that you have no signs of having built antibodies but the remicade just won't work???

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
03-14-2013, 09:11 AM   #2
my little penguin
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Takes a while to build antibodies typically a few infusions.
Prometheus test Haca is the only place to get them measured.
Having antibodies increases the likelyhood of a reaction and the drug losing effectiveness.
You can have a reaction up to two weeks after an infusion
Acute reactions occur within twenty-four hours.
You can still have a reaction without antibodies .
DS does not have antibodies ( we tested before last infusion)
But he still had a reaction.
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03-14-2013, 09:14 AM   #3
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MLP or one of the others, will have to answer about the allergic reaction part because I'm not certain but we just went through the antibodies testing.

It is a blood test that tests for antibodies but it has to be sent off and usually takes a week and a half to get back. In our situation, we only tested for antibodies when C was having the joint pain so soon after a remicade infusion. I don't imagine many CD'ers have the antibodies tested for on a regular basis since it is a fairly expensive test and alot of ins companies don't cover it in the US. But it could be different in Canada with your healthcare system.
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C age 19
dx March 2012 CD

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Dx May 2014: JSpA
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03-14-2013, 09:47 AM   #4
Farmwife
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I glad so far so good for him.
Does he seem fine with it all?
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
03-14-2013, 09:54 AM   #5
Tesscorm
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So you could have antibodies and remicade could be losing effectiveness but NOT have a reaction. In this case, as Stephen has few external symptoms and his recent bloodwork was completely within normal ranges (except slightly low HGB) even with the inflammation present, would an MRE be the only way to test effectiveness?

MLP, I've never seen it mentioned here but, just in case... The analyphylactic reaction can only happen during (or immediately following) infusion, right?

Clash, same here re the test - very expensive. Not sure if our insurance would cover it but I know my friend has had to pay a couple of times to have her daughter tested.
03-14-2013, 10:03 AM   #6
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FW - yes, Stephen's fine with it. Said it's actually relaxing, goes in, watches a movie, etc. He got home from Tuesday's (2nd) infusion at 6:30pm, was starving, ate and went out to a pub/wing restaurant to watch a game on the big screen. Seemed totally fine.

He was a bit annoyed that because of the time he has to take off from work for the 3 loading doses and follow up apptmt, he couldn't take tomorrow off for a 'long' weekend away but, that's life... Told him crohns or not, we all have to deal with inconveniences and sacrifices sometimes... I don't like to discount or play down his issues but things could be a lot worse!

But, now MLP has me worrying... You can have a reaction up to two weeks after an infusion ...he's going to be away with friends this weekend!
03-14-2013, 10:10 AM   #7
my little penguin
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Tess
The infusion clinic should have given him papers stating what to watch for during the two week period .
I think the most serious reactions tend to occur within two hours but can occur within twenty four delayed reactions tend to be less serious can occur up to two weeks later some may or may not need treated.
Please find his list or call the infusion center for what to watch for and when to call
03-14-2013, 10:18 AM   #8
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Thanks MLP... will ask him if he received a list. The pharmacist called me yesterday with lots of info but only mentioned that he might have flu-like symptoms, fatigue, itchiness, rash following the infusion but they should go away within a day, and that as he's had two infusions with no reactions, he's less likely to have them. She only mentioned that any fever or 'coloured' mucous/phlegm warrants a call to the doctor.

If Stephen doesn't have the list, I'll give the pharmacist or infusion centre a call...
03-14-2013, 11:14 AM   #9
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Tesscorm, you started a thread a while back that I posted the reaction sheet we received from the IV lab. You might go back and look at it to see the reactions per time frame.

C's GI said the most concerning time for serious reaction is during the infusion and then the 24 hour period afterward.

Some of the reactions listed on that sheet I posted play into the building of antibodies or burning through Remi too fast. For instance if you start to get joint pain 2 weeks after the infusion they want you to report because it may be that he is burning through the remicade too fast or is developing antibodies and not so much a "reaction" to the remicade.
03-14-2013, 12:40 PM   #10
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That's right! Sorry, Clash... forgot about that! I actually showed it to Stephen and hubby at the time and now completely forgot you'd posted all that info! Too much wine (or maybe not enough! )
03-14-2013, 01:15 PM   #11
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Tess,
Caitlyn's antibodies were negative and she then had an anaphylactic reaction at the second dose. I guess that means antibodies don't reflect possible allergic reactions. We only tested antibodies because she was on remicade and then stopped it and we restarted it a year later.
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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.
03-14-2013, 01:45 PM   #12
Tesscorm
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Thanks Kim.

So.... seems antibodies, allergic reactions and effectivenes are like all else with with IBD - it might, usually doesn't, sometimes it does, perhaps it will, likelihood is, for some people...

Why am I not surprised!?!?!

03-14-2013, 02:43 PM   #13
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Well that sounds totally confusing! Glad things are going well - hope they continue to do so
03-14-2013, 05:12 PM   #14
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Thanks Kim.

So.... seems antibodies, allergic reactions and effectivenes are like all else with with IBD - it might, usually doesn't, sometimes it does, perhaps it will, likelihood is, for some people...

Why am I not surprised!?!?!

Well that seems about right Tess!!! Why is it that us overly protective, anal rententive moms are the ones who get stuck dealing with a disease that contains no logic?!?
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6mp 50mg every day
Allopurinol 50mg -discontinued per new G.I. on 11/01/12
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03-14-2013, 06:31 PM   #15
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Well that seems about right Tess!!! Why is it that us overly protective, anal rententive moms are the ones who get stuck dealing with a disease that contains no logic?!?
Because we're the only ones who will still try to make any sense of it!

03-15-2013, 12:56 AM   #16
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Glad things are going well..
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Dx Premature Ovarian Failure 2014



03-15-2013, 05:01 AM   #17
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Thanks Kim.

So.... seems antibodies, allergic reactions and effectivenes are like all else with with IBD - it might, usually doesn't, sometimes it does, perhaps it will, likelihood is, for some people...

Why am I not surprised!?!?!

That may be the most brilliant quote I've ever read about IBD!!
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03-15-2013, 03:06 PM   #18
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it might, usually doesn't, sometimes it does, perhaps it will, likelihood is, for some people...


I sort of, kind of, maybe, most likely understand what you mean.

03-15-2013, 03:10 PM   #19
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My husband is starting Remicade this afternoon. Been in the hospital for 7 days on iv steroids and isn't responding. This is his first flare up that has landed him in the hospital. Diagnosed 15 years ago and has only had 3 mild flares that would be put in remission with oral prednisone...
Doc wants to start the Remicade already. Does this seem premature? Seems alot of Crohns sufferers endure much more before starting such an extreme treatment option. Any feed back would be appreciated!!
THANK YOU!
03-15-2013, 03:33 PM   #20
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LISATHEGIRLS - I think some of it depends on the GI's comfort level with 'inflammation' - I think this is the case with my son.

My son had only one real flare which was brought under control with exclusive enteral nutrition (temporary liquid only diet), since then he has been using EN only as a supplement. However, when we transferred from a pediatric to adult GI, his new GI was adamant that the continued inflammation (although it wasn't causing symptoms) would eventually cause further problems, possibly surgery. To avoid that, he strongly recommended remicade.

While I do not like the idea of using remicade, I find there are very few medications for crohns that are much safer (Low Dose Naltrexone being the exception, however, most GIs do not believe there is enough info to make it a reliable option??? Not sure I agree but...) and the consequences of untreated crohns can be very severe as well.

Is your husband's GI concerned about inflammation? Have you discussed other medication options with the GI and his reasons for choosing remicade?

Please also look under the Treatment subforum, there are sections there on all med options.

Good luck!

Last edited by Tesscorm; 03-15-2013 at 07:05 PM.
03-15-2013, 06:21 PM   #21
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LISATHEGIRLS - I think some of it depends on the GI's comfort level with 'inflammation' - I think this is the case with my son.

My son had only one real flare which was brought under control with exclusive enteral nutrition (temporary liquid only diet), since then he has been using EN only as a supplement. However, when we transferred from a pediatric to adult GI, his new GI was adamant that the continued inflammation (although it wasn't causing symptoms) would eventually cause further problems, possibly surgery. To avoid that, he strongly recommended remicade.

While I do not like the idea of using remicade, I find there are very few medications for crohns that are much safer (Low Dose Naltrexone being the exception, however, most GIs do not believe there isn't enough info to make it a reliable option??? Not sure I agree but...) and the consequences of untreated crohns can be very severe as well.

Is your husband's GI concerned about inflammation? Have you discussed other medication options with the GI and his reasons for choosing remicade?

Please also look under the Treatment subforum, there are sections there on all med options.

Good luck!
Thanks for the info. Yes, has a great deal of inflammation in both the upper and lower intestines. With this being his first major flare we really didn't know how to handle it. Since we waited so long for him to get checked out his cat scan showed a good amount of inflammation. He had a colonoscopy two and half weeks prior to his hospitalization and his colon was pretty bad then so the started the oral prednisone. He travelled for work, we went on our family vacation, he was miserable and we kept hoping the oral prednisone would work as it did in the past. Not realizing the damage we were doing putting off going in to see the doc. He had a decent day yesterday with little pain, but then passed some clots after dinner. The clots turned into bright red blood with severe pain. Amazed how he seemed to be going in the right direction and then WHAMO back to square one.
Anyhoo, they transferred him from a med surg floor to oncology and did his first infusion this afternoon. Hoping for the best.
Has your son started on the Remicade yet? Or are you still researching other options?
Thank You!!!
Lisa
03-15-2013, 07:12 PM   #22
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My son has had two infusions. I did as much research as I possibly could! But his GI very much recommended remicade and my son, now 18, was concerned at the possibility of surgery and wanted to go on remicade to minimize that risk. At 18, I have to respect his decision; I couldn't take on the responsibility of convincing him not to and then have him face surgery. Although, as I said above, there are side effects/risks with any of the immunosuppressants (remicade, humira, 6MP, Imuran, Azathioprine, methotrexate, etc.) so it just made sense to go with the one the GI was most comfortable with.

I would very much have preferred the opportunity to try Low Dose Naltrexone. There are quite a few people here who have had success with it and it has minimal side effects but our GI did not believe there was enough data to back it up and wouldn't prescribe it. There's quite a bit of info on LDN in the treatment section.

But, keep in mind that if your husband has quite a bit of inflammation that even pred was unable to control, LDN may not be enough to get it under control and you would be risking further damage. These are always tough choices!
03-25-2013, 09:53 AM   #23
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Another question re remicade

Is there a test that tests for therapeutic levels of remicade? Infusions at 8 week intervals and 5 ml(?)/kg seems to be the standard dose but how do they know this is accurate for everyone? I assume trials/time have shown this is dosage and schedule that works for 'most' people but there are lots who have had their dosages increased and/or schedules tightened. I think, for the most part, a change in dosage seems to simply be a response to the presence of symptoms.

But, is there no standard blood test to measure levels of remicade in your system? Or can this also only be tested by Prometheus tests?

03-25-2013, 09:58 AM   #24
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I think there is such a test although I dont know how frequently it is used. I am pretty sure the first time Caitlyn was on remicade she had it checked when it wasnt working for her.
03-25-2013, 10:08 AM   #25
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Tesscorm yes the serum levels test is part of the Prometheus tests usually along with HACA levels, they generally don't test levels unless symptoms are present but since Stephen was feeling good to begin with you might request the levels test. You would do it ahead of time so as to test at the right time after infusion, like right before next infusion or there about.
03-25-2013, 10:13 AM   #26
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Thanks Kim, Clash. I guess, if it's a prometheus test, it's not tested on a regular basis... and there's a (likely) chance it's not covered by our insurance??? I imagine the GI will know if it's generally covered by insurance... will ask at our next apptmt.

Good luck at your apptmt today, Clash!
03-25-2013, 10:33 AM   #27
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Thanks to all for the info!! Hubby update...
First dose of remicade while still admitted in hospital on Friday, discharged last Tuesday 3 days after infusion. Showed no response to the drug, however, came down with a terrible cough (yellow mucous) and then a fever by Thursday at home. By Friday evening we headed back to the er. Seems he picked up bacterial pnuemonia. On doxycycline for 10 days. Guessing that will delay his next scheduled infusion this Friday. On top of the pnuemonia, also low sodium/dehydrated and hemoglobin is 10. He is miserable! I hope this isn't what we have to look forward to!
04-15-2013, 06:56 PM   #28
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Had Stephen's follow-up appointment today... first one since starting remicade.

So, ALL IS GOOD! CRP is the lowest it's ever been at 0.3 (before starting remicade it was 6.5).

As far as follow-up, he said he would like to rescope in a few months but we'll see how Stephen's doing, how his school schedule looks and then decide when the scope can be scheduled. In the meantime, as his labs don't show alot (although CRP did drop...), he will be doing another MRE in August before Stephen leaves for university.

He also wants to test for remicade levels and antibodies a day or two before his next infusion.

I didn't end up asking about the fecal calprotectin or the INR as he pretty much covered everything with the scope, MRE and prometheus test!

A bit of a surprise... I told him I was going to start reducing the amount of EN that Stephen ingests so that he is done with Tolerex by June/July and, in place of the Tolerex, he would drink a couple of Boost shakes daily (not the equivalent but just a nutritional 'boost'). When Stephen first transferred to this GI, he was fairly dismissive of the EN and said that the only benefit he was getting from it was nutrition (no healing, etc.). Surprisingly, today, he said he didn't see reason to reduce it yet, while he's sure the CRP improvement is due to the remicade, the EN could be helping it along so it could only 'help' if he does keep the EN until he leaves for university (or as close to him leaving as possible)! He assumed Stephen was tired of the tube so suggested Modulen but the tube isn't the issue at all, I was actually reducing it for almost the same reason he wants to keep it going... I didn't want to take Stephen off it just before he leaves only to find out, once he's away at school, that the EN was having more of an impact than we realized. He wasn't absolutely adamant about keeping the same dosage, just thought it would be a good idea. So, we'll keep it for now...

I had also wanted to take Stephen off nexium (he's been on it since May 2011)... he takes one nexium every night when he uses the NG tube (5 nights/wk). Stephen has no problem with heartburn on the weekend (when he doesn't use the tube) but finds that he does have heartburn if he uses the tube but doesn't take nexium. (The flap between esophagus and stomach stays open a bit and allows acid to escape.) For now, I guess we'll continue with the nexium. The scope did show a little of redness at this area of the stomach, GI said it probably isn't bad enough to be causing heartburn, etc. and thinks it may be irritation from the tube... but thought it was okay to continue as is for now.

Next follow up will be after the MRE and before Stephen leaves for school.
04-15-2013, 07:00 PM   #29
my little penguin
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Glad you got such a good report.
04-15-2013, 09:44 PM   #30
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Sounds like great news and all in all a good appointment. Here's to smooth sailing from now on!!
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