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Crohn's Disease Forum » Parents of Kids with IBD » Remicade vs no remicade


11-14-2014, 10:48 AM   #1
JPsMom
 
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Remicade vs no remicade

I have a 16 yr old son that has not been truly diagnosed with crohns. He has no symptoms of cd, but he has some irritation in his intestines. The only way we know something was wrong is he had anemia and blood in stool not visible. We have had several tests and the pill camera found some inflammation in the some parts of the intestines. Currently he is no longer anemic and no blood in the stool. The gi dr tried entocort and Xifaxan for 30 days. The Xifaxan gave him a rash. The 2nd pill cam still showed inflammation. Now the gi wants to put him on remicade. I do not want to try remicade it is a power drug. From I have read it is good for people with actual cd symptoms, but in our case I think the side effects and the course for treatment would outweigh the benefits. Because he has no symptoms. Should I get a 2nd opinions. My son is very active and suppressing his immune system would cause him more problems.
11-14-2014, 11:35 AM   #2
Mehita
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I think the scariest form of Crohn's is the type with no symptoms. It gives a false sense of "everything's okay" when on the inside, it's really not.

So, if I'm understanding correctly, he's never had scopes or biopsies? Just the pill cam and some labs? My inclination would be to do scopes and get the biopsies to confirm a diagnosis. I understand your hesitation in not wanting to start Remicade (yet). It's a big step for a maybe dx. I wouldn't hesitate to get a second opinion either.

My son has been on Remicade for a year now and has never had side effects. He actually likes it better than taking daily pills. He just goes in once every eight weeks for the three hour infusion and gets on with his life. Aside from those three hours, he never thinks about his Crohn's, which is just fine with him. So, there is that benefit of Remi.

Also, some recent studies have indicated that hitting IBD with Remi in the first couple of months can change the course of the disease for the better. Less damage, less risk or surgery, etc. As an example, we worked our way up the med ladder over the course of years, ended up having surgery, failed meds, abscess and fistula. Had we started Remi right away, I'm convinced my son would have had a very different middle school experience - a normal one. I regret not starting with Remicade.

As for the suppressed immune system, Remi is less so than Imuran/Aza/6MP. My son is the healthiest one in our family and the only one without a head cold right now.

I'd try and get a firm dx, if not from your current GI, then another. Keep an eye on your son though for symptoms and don't wait too long. That simmering inflammation can cause a LOT of trouble. Been there, done that.
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
11-14-2014, 11:43 AM   #3
JPsMom
 
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He has all the scoops and biopsies. He has all the test. Thanks for your input. I think at this point I need a second opinion before I do anything.
11-14-2014, 11:47 AM   #4
Mehita
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Did the biopsies confirm anything? Granulomas? Do you have a copy of the report?

You might also just be catching the disease in the very early stages, which while good, puts a different perspective on things.
11-14-2014, 11:55 AM   #5
JPsMom
 
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No I don't have a copy of the reports. I just ordered the medical records today.
11-14-2014, 12:12 PM   #6
Clash
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I agree with Mehita, the scariest form, to me, is asymptomatic CD.

My son recently had a small bowel resection, he was 17 at the time. Testing, such as MRE, showed a small area of simmering inflammation. He was experiencing no outward symptoms. His surgeon was dumbfounded by the severity of disease at the location removed. He could not believe that my son was asymptomatic. We were aware that my son may have some minor inflammation that was not being taken care by meds but were also floored by the report.

I would definitely get a second opinion and has he had an MRE to check for thickening in the small bowel since CD is transmural?
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C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
11-14-2014, 12:51 PM   #7
JPsMom
 
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He has had the MRE. I don't the results yet. The only call I received was to set him up for remicade. I requested to be advised of the test results of all the labs and MRE. I haven't heard anything yet. I called and requested the medical records and the did not seem to happy about that. Remicade will be my last resort. I think I'm going to suggest going back on Entocort.
11-14-2014, 01:20 PM   #8
xmdmom
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These are not easy decisions esp. when the diagnosis is not firm. Sometimes doctors don't call it Crohn's if they don't see granulomas on biopsy even though most Crohn's biopsies don't show granulomas. Could this be the case with your son's doctor? I would ask whether the inflammation is consistent with Crohn's but lacking the granulomas or whether the biopsy suggests another type of IBD. Knowing what the diagnosis is will be very helpful. As others have said, People with Crohn's can have few symptoms but still have a lot of harmful inflammation internally. While there are likely some people who have very mild Crohn's that never progresses , many start with mild and do progress to more symptoms/inflammation. What is your son's Hemoglobin now?

The medication Xifaxan appears to be an antibiotic-- was this for IBD or a possible intestinal infection?

Entocort can be effective for symptoms but usually only works for a year. It also carries risks (osteoporosis) since some of the steroid is absorbed.

My son was diagnosed almost 2 years ago at age 19 with mild/mod Crohn's. On Entocort, he didn't have any symptoms except fatigue and mild anemia.
However, he has a stricture on MRE that has progressed so he has begun
Remicade

Good luck with this difficult decision!
11-14-2014, 01:47 PM   #9
JPsMom
 
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Thank you xmdmom. Hemoglobin is at 15.7. My son did fine on entocort. He was only on there for 30 days and off the entocort for 30 days when they did pill camera in July of 2014. He has been doing fine since then. In October the calprotectin stool was 252.9. This is why the dr wants to do remicade.
11-14-2014, 01:52 PM   #10
xmdmom
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Would see if you can clarify the diagnosis, find out what MRE shows and then consider options, possibly getting a second opinion. There are different options and levels of aggressiveness among GI doctors. No matter what you decide, monitoring blood work and imaging will be important.
11-14-2014, 04:31 PM   #11
crohnsinct
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I agree with all of the above. You need a firm dx. Your doc should also meet with you to go over results in detail, explain their finding and treatment options, pros, con and tell you why they are advising a certain option. Sounds like a second opinion is a good idea here.

Agree with the silent disease statements above!

As for Remicade and it's risk profile...side by side all of the drugs have equally rotten risks...we didn't have a choice at dx as my daughter was in ICU and I took what they told me we needed but knowing what I know now Remi doesn't scare me any more than the others and it does have a very high success rate. My daughter suffered only one side effectand that is psoriasis. Like Mehita's boy she is the healthiest she has been ever. She runs on the school track team and swims competitively. hasn't missed a day of school and has avoided every cold, stomach bug etc brought into the house.

Bottom line though is you have to be comfortable with your decision and the only way to do that is to get the information and explanations you are owed.

Good luck!
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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
11-16-2014, 07:38 PM   #12
Farmwife
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Hi and welcome.
My girl Grace is five and on Remicade & Methotrexate.
I agree with the need of a firm dx.
Its so frustrating when what you see in front of you doesn't match what the docs are saying to you.
I hope you have the answers soon.
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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
11-16-2014, 07:42 PM   #13
JPsMom
 
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Thank you for all the advice. I'll be praying for all your children to get better.
11-17-2014, 08:35 PM   #14
CrohnsKidMom
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Welcome to the forum, and ditto what the others have said. Whil I wouldn't want to delay treatment of Crohn's, I would want to be sure it was Crohn's I was treating! I hope you get some solid answers soon.
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11-17-2014, 11:35 PM   #15
xeridea
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Hi and welcome! Sorry you are in this difficult position and facing uncertainty. Asymptomatic Crohn's is still Crohn's. The calm before the storm is no predictor of the intensity of the storm to come. Be proactive about getting ahead of the disease and don't get into situation of chasing it. I ditto the dittos above.

You are entitled to a copy of the medical records. Get a hold of all of them and keep a folder for yourself and pass it to your son when he passes to adult care. I would insist on a copy of the scope results and pathology report. Use the reports to get a second opinion. The pathology report from the scopes will be most telling as to what's going on. It may mention the lamina propria and the presence of various inflammatory actors such as lymphocytes, leukocytes, etc. There may be a discussion of architectural disorganization etc. Meet with the GI and have them go over it with you. Prepare a list of questions ahead of time and get the answers you need.

As for Remicade. It's one of the first bilogics developed, in use since the 90's, and also one of the most effective against the ravages of Crohn's while it works. It's been administered to something like 1.8 million patients (not just CD, but the whole gamut of diseases). Yes, it has potential side-effects, but weigh those against the end-organ damage that it can prevent. Many of the side-effects dissipate once you come off it. The scary part is a stand-out study adolescent males when used in combination with the AZA/6-MP drugs. Other than that it's really the gold standard drug for Crohn's.

In my estimation Crohn's is a spectrum disease. Everyone experiences in different ways. I believe that in the next 6-8 years there will be some remarkable advances in treating this disease. We may not be able to cure it just yet, but there may be ways to put it in remission more consistently and for long periods of time. It also seems like it's a cascading disease. Getting it under control is really important, sort of nipping an inflammatory feedback loop in the bud.

Get to the bottom of it and insist on a definite diagnosis so you can proceed with weighing your best treatment options. Hold your GI to the task, it's their job. Be sure to get a clear DX, and definitely rule out UC vs. Crohn's. Though put in same IBD basket, they are very different diseases and treatment choices differ.

And my personal pet-peeve, don't buy into Crohn's being an auto-immune disease. There is sufficient studies to prove otherwise.
11-18-2014, 06:34 AM   #16
my little penguin
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Ds was on remicade at age 8.
He had a mild allergic rxn to it after the 7 th infusion but the meds definitely worked.
He is on humira plus Mtx now and they are working well.
Good idea to get a second opinion but don't let potential ( as in they may never happen) side effects scare you from using a drug which has been proven to have more benefits against crohns. Also keep in mind if the sores and inflammation were on the outside where you could see them would you treat the same way.
Hidden silent disease is the worst -.
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