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08-12-2014, 06:18 PM   #1
Catherine
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I Hate Crohn's

Sarah is no longer in remission.

Her faecal calprotectin level is 398. She says she has no crohn's symptoms whatsoever.

She doesn't appear to have lost anymore weight.

What the hell is going on
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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)
08-12-2014, 07:05 PM   #2
my little penguin
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Would this finally qualify her for remicade ??
I know she didn't before

Hugs
I am with you
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08-12-2014, 07:35 PM   #3
Catherine
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No would not qualify for remicade.

Her CDAI? would be too low.
08-12-2014, 07:53 PM   #4
Clash
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I just wanted to send hugs your way! If she doesn't qualify yet for biologics then do you just adjust current med or switch to another immunosuppressant?
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Mom to
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
08-12-2014, 07:54 PM   #5
my little penguin
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I am confused - if she is flaring on Aza
Does she have to have damage before they would switch her??
08-12-2014, 09:39 PM   #6
kimmidwife
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Catherine,
So sorry to hear! It seems a lot of our kids are going through this right now! Ugh! Hoping they make a plan quickly and she gets into remission!
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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.
08-13-2014, 12:04 AM   #7
Maya142
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Really sorry to hear Catherine. Hope they can figure something out for her soon
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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
08-13-2014, 02:46 AM   #8
Catherine
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To qualify for remicade you need to meet to one of the following:

Initial PBS subsidised treatment with a TNF alfa antagonist agent of patients with severe refractory Crohn disease with a Crohn Disease Activity Index (CDAI) score greater than or equal to 300.

Initial PBS subsidised treatment with a TNF alfa antagonist agent of patients with severe refractory Crohn disease with diagnostic imaging or surgical evidence of short gut syndrome or with an ileostomy or colostomy.

Initial PBS subsidised treatment with a TNF alfa antagonist agent of patients with severe refractory Crohn disease with extensive small intestinal disease and radiological evidence of intestinal inflammation affecting more than 50 cm of the small intestine.
08-13-2014, 02:49 AM   #9
Catherine
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I am confused - if she is flaring on Aza
Does she have to have damage before they would switch her??
She would need have cdai index of 300. Current index approx. 7

The small bowel effected would need to be more than 50 cm. Last MRI show involvement to 10 cm.

Last edited by Catherine; 08-13-2014 at 07:45 AM.
08-13-2014, 03:05 AM   #10
Catherine
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I just wanted to send hugs your way! If she doesn't qualify yet for biologics then do you just adjust current med or switch to another immunosuppressant?
I believe the GI will test aza levels with the hope of increase further. Although she is currently on 2.7 per kg.

If that not a option then weekly injection drug starts with M.

Or surgery
08-13-2014, 04:34 AM   #11
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So sorry to hear this. We are also in Melbourne.I don't know where your girl is being treated, but we found that the Alfred Hospital in Prahran had a lot of experience with Remicade and were very keen on it for young adults. One of the IBD nurses there, Belinda, was an absolute gem and is very happy to talk on the phone about the treatment options they offer. Wishing your daughter a speedy remission.
08-13-2014, 06:28 AM   #12
Catherine
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Hi Helen, we use a GI in Dandenong. When Sarah had her last flare it was the Alfred who advised she wouldn't qualify for Remicade. It may be different this time.
08-13-2014, 07:11 AM   #13
my little penguin
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That is ridiculous to have to wait for more damage to her small bowel before they will use it .
That is like waiting for multiple heart attacks before treating to prove the heart attack causes damage. They know the crohn's will cause damage from inflammation and they know her current drugs are not stopping the inflammation .

I am so very sorry
08-13-2014, 07:36 AM   #14
Catherine
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This why hate Crohn's. Also hate the CDAI
08-13-2014, 07:38 AM   #15
my little penguin
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Yeah that Cdai was meant for research purposes only not to be used in clincal practice.
Is there a legal way to fight it ?
08-13-2014, 07:53 AM   #16
Catherine
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We await for the blood test request forms. Should arrive in tomorrow mail. I am very organised appointment booked for GI on 29 August. Get new plan.
08-13-2014, 07:59 AM   #17
Tesscorm
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So sorry, Catherine! And agree with all MLP said - it's ridiculous that they won't approve a med that will PREVENT the damage! I hope you find a way around this.
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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
08-13-2014, 10:02 AM   #18
Ands
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So sorry to hear this. It is so frustrating that us, as parents, can almost see what is needed and yet we are bound by what ever healthcare system we live with.

Our children shouldn't be left to suffer whilst the professionals work their individual systems. Every child is different and the disease is different for every child and therefore surely treatment plans should be flexible.

Sending big hugs. Xxxxx
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Son Joseph diagnosed July 2012 (aged 10)
Crohn's: oesophageal, ileal, oral and perianal disease
6 week exclusive modulen
8 weeks predisolone
2 weeks azathioprine - stopped after reaction
6-MP 50mg - stopped June 2014 (after 18 months)
Currently on:
Sennoside 18ml daily
Multi Vitamin
Omeprazole 10mg
Prochlorperazine 2 x 5mg
Predisolone as a mouth-wash (as and when needed)
08-13-2014, 11:27 AM   #19
CrohnsKidMom
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Just wanted to send my support. I hope you get her back on the road to feeling well again!
08-13-2014, 03:28 PM   #20
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Very sorry to hear that! Glad you don't need to wait too long till the appointment
08-13-2014, 05:54 PM   #21
Catherine
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The daughter has been called an odd or interesting case.

Sarah has few if any symptoms which could be related to Crohn's

Do any of these sound like Crohn's to you guys

- sick feeling in the stomach (no pain) just the last couple of day.
- slight change in bowel habits (two days only)
- lower back pain
08-13-2014, 06:59 PM   #22
Pilgrim
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Well, no it doesn't sound serious based on the symptoms. But a doctor who specializes in Peds IBD should know that there are always exceptions to the normal presentations!

We're new to Crohn's but I had to remind the new team to not base any decisions on how our kid looks and acts. Use labs and diagnostics.

Plus some kids are amazing about pain tolerance. It sounds like your daughter is. I hope you can get to an appeals process with the meds to get her what may help.
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Mom to daughter,age 5, diagnosed at age 3 with Crohn's Disease
Current Treatment: Humira (started 12/2014) moved to weekly injections (07/2015), Back to 50% EN orally. Zinc supplements. Calprotectin through the roof.
Previous Treatment: Azathioprine (discontiued 09/14 due to Pancreatitis) Flagyl, Sulfasalazine, EEN, Iron,Vit D, Zinc, SCD
08-13-2014, 07:41 PM   #23
Maya142
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Low back pain could spondyloarthritis, often associated with IBD. She should see a rheumatologist if it continues. It is better to catch SpA/AS early and treat it aggressively, so definitely keep an eye on it.

These are symptoms of inflammatory back pain:
What are the symptoms of inflammatory back pain?
Typically, inflammatory back pain:
Starts before the age of 40 years
Has been present for at least 3 months
Has come on slowly over time
Is worse in the mornings
Causes stiffness in the mornings lasting for at least 30 minutes (stiffness is perhaps best described as the sort of aching you get the day after heavy exercise)
Improves with exercise, and is worse with rest
Improves with anti-inflammatory drugs (e.g. ibuprofen)
Can wake people from sleep, often in the second half of the night
Can often cause pain in the buttocks, but rarely pain shooting down the leg (sciatica)
08-14-2014, 08:02 AM   #24
Tesscorm
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S had back pain for months before diagnosis. It was mainly in his lower back but did, at times, reach up to upper back. He did have an injury that started the pain, however, by the time he got his crohns' diagnosis, we weren't able to determine if the use of ibuprofen triggered the crohns and the back pain was unrelated or if, by that point, the back pain was related to the intestinal inflammation and no longer being caused by the injury. He did see a rheumo at diagnosis and all was fine.

Even more confusing, for the most part, his back pain went away after he started on EEN/EN (he would only rarely have a back ache), however, MREs continued to show intestinal inflammation for two years (until he started remicade).
08-14-2014, 05:28 PM   #25
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Sorry to hear this Catherine.

We thought she looked dreadful when we saw her a couple of weeks ago. Our impression was she looked completely exhausted and like she was really struggling.
08-14-2014, 06:40 PM   #26
Catherine
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Agree at times she doesn't look well.

I expecting the blood test to show anemia. She is also very thin.

She is still saying she is not Crohn's sick.

Today she had
- headache
- general feeling of being unwell
- cold
08-16-2014, 06:26 PM   #27
DustyKat
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Couldn’t agree more Catherine Crohn’s sucks and the CDAI, both adult and paediatric are an absolute joke.

My Sarah’s Crohn’s never ran a ‘normal’ course clinically and in presentation. Most of her symptoms were extra intestinal. The absence of blood and diarrhoea are major factors in skewing numbers against those that don’t suffer with them and that is not uncommon in small bowel disease. I have keyed Sarah’s symptoms and bloods into the CDAI before and she wouldn’t even come close to being over 150 at her worst. Ironically enough, now that she has had surgery, if she stopped her psyllium she could now score on the loose stools front while in remission! Ha, what a crock of s*** the CDAI is! I have told the GI that, just so he knows how I feel , and Medicare.

I hope the new treatment plan works but if not they then can’t deny her disease is refractory.

In my thoughts.

Dusty. xxx
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08-21-2014, 07:52 AM   #28
Catherine
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Finally received the blood test form. We are testing 6mmp, 6tgn, ratio.

Comment: Crohn's disease refractory to treatment?
08-21-2014, 07:59 AM   #29
my little penguin
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But how is it refractory to treatment if they are ignoring a whole class of drugs ( biologics)?
Maybe they are trying to prove the other drugs are not working to get approved for biologics .
Ie her levels are therapuetic for the current drug but her disease is still progressing ????
08-21-2014, 08:14 AM   #30
Catherine
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It appears refractory Crohn's disease means disease where remission can not be obtained using standard treatments. I starting to believe aza does not work for Sarah.

http://onlinelibrary.wiley.com/store...3oc1k&db632d6c
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