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Crohn's Disease Forum » Parents of Kids with IBD » Doctor forcing for Remicade


03-24-2017, 06:47 AM   #1
Bets
 
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Doctor forcing for Remicade

Hi,

My daughter has Crohns and is in the hospital doing enteral feed. She seems to be doing well and the doctors were convinced that she's doing well on Imuran and Prednisolone.

Then the main GI dug out a month old MRI. They think there is a fistula there although they are not convinced 100%. One radiologist said it is inflammation and the other said the start of fistula, however, he is not 100% sure. Since she has no discharge from the fistula the Aus PBS scheme will not cover the Remicade.

So the doctor said that I can manipulate to get it under the PBS scheme and start Remicade next week. The question I have is why are they so interested in pushing Remicade when they can wait and see if anything changes. Is this correct?

Betsy
03-24-2017, 10:11 AM   #2
Rosco
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Hi,

My daughter has Crohns and is in the hospital doing enteral feed. She seems to be doing well and the doctors were convinced that she's doing well on Imuran and Prednisolone.

Then the main GI dug out a month old MRI. They think there is a fistula there although they are not convinced 100%. One radiologist said it is inflammation and the other said the start of fistula, however, he is not 100% sure. Since she has no discharge from the fistula the Aus PBS scheme will not cover the Remicade.

So the doctor said that I can manipulate to get it under the PBS scheme and start Remicade next week. The question I have is why are they so interested in pushing Remicade when they can wait and see if anything changes. Is this correct?

Betsy


Not saying anything bad about doctors but Humira and Remicade are very expensive. My son was diagnosed ten years ago with Crohns and in 2016 had a bad flare up in Jan 2016 after being on Macaptapurine, for 8 years he had a severe flare and then in Jan 2017 had another flare at that time the doctor went for Remicade the affects can be very harsh we also found the cost is very high for treatment. I personally do not trust doctor / pharmaceutical relationships and as much as I see these pushed makes me personally wonder if they get nice kick backs from the medication. We have found getting a second opinion has always revealed other options. Thats just my take on it
03-24-2017, 10:49 AM   #3
Farmwife
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Hi and welcome.
My 8 year old has been on remicade for 2 years,along with Imran.
She's done great on this combo.
The side effect from any drug can be scary (have you read Tylenol?).
But for me, I have to weigh quality of life and the damage that under controlled ibd can cause. Look it up, it's scary stuff.

The second opinion is a great ideas for anyone.
I highly suggest it if your questioning the advice of the doctors in your child's life.
I went all the way to the Mayo Clinic to get my kid one. It was worth it!

Hugs
__________________
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
03-24-2017, 10:50 AM   #4
Farmwife
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I'll tag in. .....
Maya 142
Mlp
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03-24-2017, 11:07 AM   #5
my little penguin
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Yep Ds has been on biologics since age 8
He is now 13
Most recommend biologics since they reduce the future risk of surgery (which is 75% within 5 years of dx for kids even treated on immunosuppressants) but lowers to 30-40% when biologics are added

The earlier they are added the better a child's growth and more healthy intestine

Most GI now know to aim to full mucosal healing vs things look "kinda ok"
And most try top down theory sooner to keep as much intestine healthy as long as possible

Personally aza has a very high risk of lymphoma in ibd patients
Vs biologics which when used by themselves or with mtx is not as high
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03-24-2017, 11:15 AM   #6
my little penguin
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These new therapies have led to a shift in the goals of IBD management from just controlling clinical symptoms to preventing disease progression. However, despite these advances in medical therapy, surgery is still required in 30%-40% of patients with CD and 20%-30% of patients with UC at some point during their lifetime.

From
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4872064/
03-24-2017, 11:21 AM   #7
my little penguin
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http://cdn.intechopen.com/pdfs-wm/35455.pdf
03-24-2017, 11:55 AM   #8
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I wonder too if doctors are getting kickbacks from Remicade and the other big pharmaceutical companies. Its an awful amount of money for a treatment. I tried Remicade and expected big things. However, my system couldn't tolerate it. I've returned to the all natural route and diet which I believe is much safer and only turn to the chemical route temporarily when I have a flare that needs to be knocked down.
I have concerns with young people taking these heavy meds on the long term. I don't like side effects that mention liver kidney complications and cancer. These tell me that I am taking unknown levels of risks I am not willing to take unless warranted. It would only be a case when everything else fails.
03-24-2017, 12:13 PM   #9
my little penguin
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Bufford kids tend to have more severe disease
And while all moms /dads would love to just use diet and lifestyle
That is not realistic or safe for kids who will have this disease for upwards of 70 years in most cases
Biologics are no worse than immunosuppressants
And they are the best meds at this time to treat it
Parents agonize over it
It is not a decision made lightly and there are no alternatives
Kids need to grow and gain weight

They do not use these meds as a last resort anymore
And everyone is different


So unlike adults where disease type and location mainly stays the same
Kids get worse
Change from inflammatory to fistuluzing or strictures as well as spread
Diet does not stop this in kids

So I am glad you found something that works for you as an Adult
The same rarely applies to children's disease since it's a different phenotype
03-24-2017, 02:37 PM   #10
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Appreciate all your views. I think we might be taking the remicade option soon. She recently had been treated with cipran and broad range antibiotics for aeromonas bacteria. and that along with the enteral feed seems to have got her up very quickly. She gained 8 pounds and seems more energetic.

So all I am asking the doctors is to wait a month or so to see if she maintains this way. If not we go the biologicals way. In Australia the remicade costs are covered by the government PBS scheme and I do feel thats exploited by the doctors.

Bufford, what diet and natural route are you taking? Are you doing any alternative treatment?

Betsy
03-24-2017, 03:55 PM   #11
Maya142
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Like MLP said, kids tend to have more aggressive disease. Plus, it is VERY important to get it under control so that kids can grow and gain weight and develop properly.

When our doctors first brought up biologics, I was terrified. I was terrified of infections, the (tiny) cancer risk etc. But at some point, the disease became scarier than the meds. My kiddo was in constant pain and always missing school. She was miserable. We had to do something.

She has been on biologics for years now, never had ANY side effects and is a normal, happy young adult. We have never ever regretted putting her on biologics for a second.

When my second daughter was diagnosed, I worried all over again - agonized and lay awake at night worrying, even though I knew her older sister was doing well on biologics. Eventually, we went to Humira. It also made a huge difference to her quality of life. She's had no increase in infections, no side effects and as it turns out, the cancer risk has more to do with the disease (from inflammation) than the medications.

My only regret is not putting my girls on them sooner. Both girls have permanent damage to their joints (they have arthritis too) because we didn't put them on biologics sooner. I will always regret being too afraid to treat them properly.

It is actually being found that biologics are MUCH safer than medications like Imuran and 6MP. Imuran and 6MP have a higher cancer risk and a higher infection risk. My kiddo was on Imuran for two years and honestly, I'm much more comfortable having her on biologics.

Good luck!
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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
03-24-2017, 04:18 PM   #12
Bufford
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Bufford, what diet and natural route are you taking? Are you doing any alternative treatment?

Betsy
Ive been taking Tumeric Curcuma in powder form disolved in a glass of water. About a half teaspoon. 1000IU vitamin D, Biotin, Magnesium, Zinc and probiotics. On their own they do quite well. I also have a prescription for medical cannabis, mesalamine enemas and take painkillers when needed which is not every day.

For diet, for the most part its quite bland and portions are small. Lots of chicken, eggs as sources of protein. No nuts or any hard vegetables, everything must be peeled, vegetables cooked well. Carrots agree with me, but gassy vegetables like broccoli are no go foods. Fruit like bananas are a friend, apples are out unless very soft. I limit the fiber to reduce the load on my system. I have to avoid fats, but once in a while I can have a deep fried treat. I love bacon and eggs, but I have only had it once this year. Sweets are a bit tricky, things with chocolate I have to limit.
LIfe can be a bit of a balancing act
03-25-2017, 04:04 PM   #13
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Thanks all. I'll consider the option of remicade if the need arises.

But as I mentioned she seems to be doing very well on an enteral diet and I'll try to introduce food one at a time and see. I tried the SCD diet in Dec but it did not work for her. I am of Indian origin in Australia and we cannot do heavy meat based diet predominantly coming from a rice/starch based diet. She went very weak on the SCD diet. She was up and running when I introduced rice to her diet and cut down the meat. So I guess diets need to be tweaked based on individual and origin.

Also, after a round of cipran and broad range antibiotics things seem to have improved her condition. She had aeromonas bacteria in the stool which was ignored by her GI in Nov. She was treated for it in when another doctor followed up in Feb 2017. She was diagnosed with CD in Nov 2017

My worry is when doctors push for remicade and to say that we can change the Aus. pharmaceutical benefits scheme and get you the medications seems unethical especially when she seems to be improving a lot on the semi liquid diet. Remicade should be the last option when all other options have been exhausted or if the child is showing no improvement and/or is in constant pain.

We are keeping a close eye on her. If anything changes then we go down the remicade path.

Maya142, do you kids take remicade without imuran? My doctor was suggesting a combo of the two because remicade alone develops antibodies

Betsy
03-25-2017, 04:18 PM   #14
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My kiddos were on Methotrexate or Imuran with Remicade. They prevent the development of antibodies. Both my girls have been on multiple biologics over the years and we want to do all we can to prevent them from going through drugs too fast.

I understand your hesitance with Remicade - believe me, we were terrified to put my kids on these drugs. But at some point, the disease became more terrifying than the medications. My girls went from being in pain constantly and missing school a lot, to being happy teenagers.

The things with a liquid diet (enteral nutrition) is that it works very well to induce remission. There is PLENTY of evidence showing that it does induce remission and it also works great for mucosal healing.

But there is very little evidence that kids can use it to maintain remission. Most kids flare as soon as foods are introduced.

It is also very hard and isolating to keep kids on such a strict diet, especially as they get older.

Additionally, a semi-liquid diet (I guess you mean some % food and some % formula?) does not work to induce remission. It MAY help maintain remission and it'll certainly help with weight gain but studies show that only exlcusive enteral nutrition (between 80 and 100% formula - usually 100%) works to induce remission.

The longer the disease remains untreated, the more likely complications like fistulae, strictures, abscesses are.

Remicade used to be used as a last resort, like you said, but doctors realized that if it's used early, the outcomes are better. Kids are less likely to have surgery, less likely to have complications like strictures, abscesses etc. and MUCH more likely to grow and develop normally.

We are also of Indian origin - my girls actually grew up there. We have tried many special diets, including gluten free, but nothing worked except medications.

My daughter does get supplemental enteral nutrition - she gets it through her feeding tube every night. Without it, she loses weight quickly.

Fistulizing Crohn's automatically means your child is in the severe category. That is probably the reason they are pushing Remicade. Remicade works best for fistulae and they probably want to prevent more complications.
03-25-2017, 06:20 PM   #15
malorymug
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You've received lots of great responses. I wanted to add to them because when my son was first diagnosed the imaging saw a fistula as well. His doc believed in the bottom up approach (starting with mild meds and working up) rather than the top down approach. He was on 6MP for the first year. It was disastrous and while we patiently waited for the meds to work his fistula continued to grow and his Crohn's simmered unbeknownst to us (labs were improving). Two years after diagnosis he had his first surgery and now we are facing his third surgery and discussions of colostomy for bowel rest to heal the fistula. He has been on remicade for two year but the first 12 months his remicade levels were unmonitored and his dose was too low. Remicade at the correct levels has him in clinical remission but he is still fighting the fistula.

My son's situation is one reason why they are pushing remicade. I wish we had started more agressive.

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Mom to: 15 year old boy
Crohn's in stomach, small intestine, large intestine, and perianal disease
Diagnosed April 2014, at age 13

Currently taking:
Remicade 10mg/kg every 6 wks
Methotrexate 7.5 mg/wk
Cipro
Augmentin
Miralax

previous meds:
6mp 50mg
Flagyl
Cipro
Prednisone 30 mg
03-25-2017, 06:42 PM   #16
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malorymug, thanks for sharing your story. Your poor kiddo has been through a LOT recently!

Will be keeping my fingers and toes crossed -- hope his fistula starts healing and the discussions for the surgery go well.
03-25-2017, 07:06 PM   #17
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malorymug, hope you son gets well soon. Thanks for letting me know.

You said the labs were improving - but crohns/fistula continued to grow. Were there any signs of that - less hungry, pain, diarrhea/gas etc. Any signs that warned you to be cautious even though the blood reports were ok?

With my daughter first sign of being unwell is starting of gas pains.

Betsy
03-25-2017, 10:40 PM   #18
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Take the Remicade, especially if there is a fistula involved. Make sure your immunizations are up to date and get started. Don't waste time.
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Renee (23) dx 9/15 - Status: Feeling Good

Current Meds:
Remicade 7.5mg every 6 weeks
6MP @ 100mg /Day
Omeprazole
Vitamin D2 50000iu /Weekly (Prescription)

Supplements:
Multivitamin
Caltrate
Vitamin D3 1000iu /Day
VSL Daily Probiotic
Organic Apple Cider Vinegar

Failed Meds:
Humira

Gall Bladder removed 4/16

_____________________

Julia (20) dx 6/08 - Status: Remission 9yrs
Current Meds:
6MP @ 100mg /Day

Supplements:
Multivitamin
03-27-2017, 07:22 PM   #19
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Another option is look closely at the law suits associated with Remicade and Humira. Many drugs can take years to cause major problems. I know that we often want the magic pill. And in the last year many drugs that were also created in that time frame are pulled and no longer used. Being we have dealt with this for 10 years with our son I too want the magic pill. I do not think Humira and Remicade are the answer, new side affects are added pretty often. Tylenol also has warnings as one suggested. All meds have warning but these two drugs are fairly new. Just think how many drugs are no longer used and were new just a few years ago. Hope for your speedy recovery and health.
03-27-2017, 07:47 PM   #20
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Remicade and Humira have been around for over 10 years. Both are safe drugs. All the doctors we have seen (and we have seen a LOT between my two girls - about 4 GI's and 18 rheumatologists) say that these drugs are much safer than initially thought. The whole cancer risk was blown out of proportion when they first came out.

Later they found that people with inflammatory diseases - IBD, juvenile idiopathic arthritis, RA - are more likely to get cancer anyway because of their immune systems.

The real risk associated is with opportunistic infections, but even those are rare.

My girls have been on these drugs for 8 years or so - NO side effects and no problems.

My girls and husband all have ankylosing spondylitis (AS) - a type of progressive inflammatory arthritis that affects the spine and other joints. In the worst cases, the entire spine fuses and you lose all spinal mobility. The joints where the ribs attach to the spine can also fuse, which makes breathing painful and difficult. The other joints (often hips, knees) are often destroyed and need to be replaced.

My husband was diagnosed way before biologics exist. He has had 5 hip replacements starting at age 30. His spine is partially fused and has restricted rib cage expansion. He also has an ankle that is fused and the bones in his foot are so destroyed that they can't even replace it. Since his cervical spine is fused, it is brittle, and if he were to fall, he could very seriously injure himself (even fatally).

He has only ever been on NSAIDs because nothing else existed when he was diagnosed.

In contrast, my girls have been on biologics since they were diagnosed. My older daughter went from being in constant pain and missing school to being a normal happy teenager. She has graduated college and double majored in English and Biology. She even played soccer in college!

She has a job and is like any normal young adult. She has a little joint damage to her SI joints and hips but her disease is under control and she lives a normal life.

My younger daughter has had a harder time, but she still does not have the major joint damage the way my husband does. She is going to college and is happy. She does struggle with pain and has some SI joint fusion and hip damage, but nothing like my husband's.

Without biologics, I know she would definitely be in a wheelchair and would be in constant, excruciating, unrelenting pain.

As for her IBD, after 8 months on Remicade, all the ulcers in her colon had healed. Her GI said her colon "looked beautiful" - as if she didn't have IBD at all. Right now she is flaring, but we have switched her to a new biologic and I'm sure she will feel better soon.

Honestly, we are just so grateful biologics exist.

ALL drugs have side effects, including Tylenol, and for us, quality of life is very important, so the risks that come with biologics are very worth it.

I'm going to tag some parents whose kids are on biologics:
Clash
Tesscorm
my little penguin
crohnsinct
Farmwife
Mehita
pdx
03-27-2017, 08:35 PM   #21
Farmwife
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I want to second what Maya very well put.
I was told at the beginning of this journey that the gi doctor was hoping to keep Grace's colon in thru high school (she was three at the time).
Her rheumatologist told us when she was dx with aggressive arthritis, that keeping her knees intact thru high school was his goal.

With in 3 months of starting a biologic drug her gi flare stopped!
Her arthritis is still on the rough side but we just got her xrays of her knees back and guess what?
Almost 6 years of arthritis and still no visible damage!
That is why I love this drug.
Do I still wish she didn't have any of this? Of course!
I also wish I was a size 8 but that ain't gonna happen! Lol

Every parent had to choose the best course for there kiddo,

Hang in there!
03-27-2017, 09:54 PM   #22
my little penguin
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Completely agree
Every single parent and mbr here knows of the "risk" profile of all Crohns meds including biologics

But the risk of under treated or untreated disease can be ICU
More than one parent has seen that one

Not taking meds is not an option for kids
Immunosuppressants have high risks for little reward imo
Biologics have lower risks for more reward

Ds scope continued to show inflammation on just immunosuppressants
Once on biologics his scopes were microscopically healed

Over 6 years on biologics
It also controls his JSpA
His arthritis is a mess without them causing pain and shortening of his tendons in his hands

So while it is easy to use scare tactics
As parents we are aware of those risks
But letting my child still be able to have functioning hands is important to over all quality of life
As well as a healthy intestine without surgery
03-28-2017, 06:56 AM   #23
Catherine
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Bets, unless things have changed a lot since my daughter dx 5 years ago approval for remicade is not easy to get in Australia. What state are you in?
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
03-28-2017, 12:56 PM   #24
Tesscorm
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Bets, I can't add more to what's been said. There are lots of risks we accept for our kids in the name of quality of life. While the comparison may not be perfect, we allow our kids to go swimming, be out in the sun and risk sunburns, learn to drive at 16 and then be driven by other inexperienced teen drivers, they play sports, they ride bikes on the road, etc., etc. Of course all these things create a quality of life that is enjoyable but if, each time they were to leave the house, we were to read the risks involved, we'd probably hesitate in letting them go. These medications are necessary to maintain and improve their quality of life. We all wish and pray that one day the meds aren't necessary but, until then, the risk of keeping them healthy is worth it.

But, hugs, because it's never an easy decision.
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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
03-28-2017, 10:34 PM   #25
Bets
 
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Bets, unless things have changed a lot since my daughter dx 5 years ago approval for remicade is not easy to get in Australia. What state are you in?
Hi Catherine,

I am in NSW. We were prescribed Remicade as soon as sulfasalazine did not work. That time she did not have the fistula. They wanted to jump straight to remicade without Imuran. Later when we asked questions the GI told us that they made a mistake. They said they confused my daughter with another patient. That made us wary about the way things were proceeding.


Betsy
03-28-2017, 10:36 PM   #26
Bets
 
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Catherine,

Was your daughter diagnosed with Crohns? What treatment is she on?

Thanks.
03-29-2017, 10:20 PM   #27
Catherine
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My daughter is still on Imuran. Currently living in the UK and doing well. She now 21.

Imuran treatment need to fail before getting approval for Remicade.
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