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03-20-2015, 09:57 AM   #1
Maya142
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Simponi for M

I wanted to start a new thread since there are so few kids on Simponi. M will be starting Simponi today. It was prescribed mostly because high dose Remicade just wasn't controlling the AS - M has had many many sleepless nights because of pain in the last few months.

Her IBD seems to be mostly under control, though she did have a week of bloody BMs a few weeks ago and has abdominal pain (LRQ) on and off. Her GI wanted to scope her before we switched but M begged because she's sick of tests (6 MRI's, 1 SBFT, 1 gastric emptying test, 1 upper endoscopy all in the last few months) so she agreed to scope her in the summer instead.

She is doing a loading dose today (2 shots) and then will do one shot every 2 weeks, which is much higher than the regular dose I believe. I think her rheumatologist plans to space them out once she's doing well.

Really hoping this will be her magic drug.
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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
03-20-2015, 11:06 AM   #2
Farmwife
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I hope this works for M and she's back to herself very soon.

I know I'll be watching this thread with great interest as Grace doesn't seem to be responding to Remicade as much anymore.
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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
03-20-2015, 11:09 AM   #3
my little penguin
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Really hope it works it magic for her quickly
So she can get healthier and some much needed rest
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DS - -Crohn's -Stelara
03-20-2015, 11:21 AM   #4
FrozenGirl
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My infusion center for Remicade also teaches people to inject Simponi and I have heard lots of good things about it, the big on being very few side effects. That is a higher than usual dose ( once a month after loading is usual) but from people I have talked to it doesn't sting or burn going in. Are you doing the pen or the syringe? Hopefully it will be awesome for her!
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Dx: Ulcerative Colitis, Nov 2013
Currently on:
Mezavant 4.8g
Vitamin D 1000iu
Calcium
Tecta 40mg
Remicade: 600mg, every 4 weeks
Methotrexate: 15 mg (injection)
03-20-2015, 11:39 AM   #5
Maya142
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Pen for M (she will be going to college next fall and wanted the pen so it will be easier to do her own shots).

I think the high dose is because she has failed Enbrel (before IBD diagnosis), Humira (twice) and Remicade (three times, including 20 mg/kg high dose Remicade). She will remain on Imuran.
03-20-2015, 12:03 PM   #6
FrozenGirl
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Ah, makes sense. Wow that is high dose Remicade. Hopefully this dose will work for her!
03-20-2015, 01:39 PM   #7
Sascot
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Really hope it works well!
03-21-2015, 04:08 PM   #8
Tesscorm
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Lots of wishes this works for her! Hope her first shot went well!
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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
03-21-2015, 04:58 PM   #9
Maya142
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Shots were not painful at all - no burning like Humira!! Now we wait...
03-21-2015, 05:27 PM   #10
Clash
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Glad the shots went well! I hope this is her miracle med!
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Clash
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
03-21-2015, 08:32 PM   #11
SupportiveMom
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D has no complaints for Simponi. she has no side effects afterwards either. Sorry you had to switch biologics but glad to see another kid on simponi! I am hoping she can stay on it after surgery, but based on our last appointment Tuesday doc is pushing Entyvio now. We know what to expect with Simponi and is so much easier for her to do on her own. I like the fact we don't even have to ice the area beforehand, just take it and do it!
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Mom of 16 yr. girl w/Indeter.Colitis Sep. 2012(age 11) Nov.2012 Crohn's Sep. 2014 Crohn's Colitis, UC Nov 2015, Crohn's Feb. 2016

Ileostomy surgery July 2015

Current Meds: None!
Previous Meds: Humira, Remicade, Methotrexate, Cipro, Flagyl, Zofran, Cortifoam, 5-ASA suppository, Questran, Mezavant, EEN (Peptamen Jr. 1.5) by NG tube, Antibiotic Cocktail (Vancomycin, Metronidazole & Doxycycline), Simponi, Prevacid, Imuran, prednisone
ibdsupportivmom.wordpress.com ☆
03-21-2015, 08:34 PM   #12
SupportiveMom
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Jennifer maybe it's time to make a thread in Treatment for golimumab/ Simponi now that more are on it?
03-21-2015, 08:55 PM   #13
Maya142
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Simponi is so convenient SupportiveMom! M can definitely do it by herself in college - she really likes that. No side effects at all so far, but we weren't really expecting any.

I hope your daughter can stay on Simponi - the fact that she had some response even if just for four months is promising isn't it? Whatever they put her on, I really hope they can find something to help her .
03-21-2015, 09:05 PM   #14
SupportiveMom
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I think the doc is thinking after surgery try something new to Kickstart remission. I worry addING one more drug means she's out of meds to try. I want to hear why the doc wants to switch after our surgery consult & if the surgeon agrees. Otherwise I want to stick with Simponi!
03-29-2015, 07:57 PM   #15
Maya142
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M's fecal calprotectin (done before she started Simponi) came back. It was 257 - not terribly high but considering she's had one at 36, really hoping the Simponi will work for the IBD as well as for her joints.

So far no improvement, but it hasn't even been two weeks so we're just waiting...
03-29-2015, 10:11 PM   #16
SupportiveMom
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Is she doing Simponi with another drug? D has it with Imuran.
03-29-2015, 10:14 PM   #17
Maya142
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Yes, Imuran too for M. We are trying to raise the dose but haven't been able to yet because we've been so busy dealing with her arthritis, gastroparesis and weight loss.
03-30-2015, 06:51 PM   #18
izzi'smom
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Just adding that izzi has been on simponi as well. We are at every three weeks with a slight improvement in crp and pain. (initial improvement after loading dose was drastic). She is also on tacrolimus.
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Angie, mom to Izzi,10 Crohn's Colitis 1/11 prednisone, entyvio since 2015 Tried: Tacrolimus, Bactrim, simponi, Levsin, Prevacid, Prednisilone, Humira, Remicade, EN via ng, vancomycin, Pentasa, carafate, Sulfasalazine, Cortifoam enemas, dietary changes, fish oil, VSL#3.
04-01-2015, 08:45 PM   #19
kimmidwife
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Be interested to see how they do on Simponi. Our doctor is not a big fan of it which is why she didn't even consider it.
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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.
04-01-2015, 09:19 PM   #20
Maya142
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Our GI doesn't like Cimzia at all, and it was between that and Simponi. Incidentally, her rheumatologist isn't a big fan of Cimzia either.
04-02-2015, 02:57 PM   #21
SupportiveMom
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I know one other kid on Simponi at SickKids hospital and he is doing very well on Simponi. He is the only person I know on the drug besides those here on the forum. He has had a resection, and ever since the drug does even better for him I am told by his mom.

To touch base on the dosage, D also takes it every other week. It is standard dosage for those with UC so I think that is why it is the same dosage for Crohn's. See the link here: http://www.simponi.com/ulcerative-co...ment-frequency
05-21-2015, 09:44 AM   #22
Maya142
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Just got M's iron studies back and they are weird:

Name Value Reference Range
Iron Bind.Cap.(TIBC) 287 250-450 ug/dL
UIBC 110 (L) 150-375 ug/dL
Iron, Serum 177 (H) 35-155 ug/dL
Iron Saturation 62 (H) 15-55 %

Ferritin, Serum 187(H) 15-150 ng/mL

She is not taking iron supplements - just a multivitamin with some iron in it. Her iron studies are generally normal (except Ferritin is high due to inflammation usually).
05-21-2015, 10:33 AM   #23
Mehita
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Does she have inflammation going on now?
05-21-2015, 10:35 AM   #24
Maya142
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Her joints are definitely inflamed, her IBD seems mostly ok (last FC was 257).
05-21-2015, 04:30 PM   #25
Catherine
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I would be looking at getting a multi vitamin without iron.

What are her folate and B12 level? How her haemoglobin level?
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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)
05-21-2015, 09:30 PM   #26
Maya142
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Hemoglobin was 11.2. Folate and B12 weren't done. I think you're right Catherine, I am waiting to hear from her hematologist about it.
05-21-2015, 09:31 PM   #27
my little penguin
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Hope the hemotologist has some answers
05-22-2015, 03:29 AM   #28
Catherine
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Getting her b12 and folate up to top end of the ranges may help her hemoglobin level. Iron won't help less she has IDA.
05-23-2015, 01:06 PM   #29
Mr chicken
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How is she doing today ?
Can you see a difference in the joints since starting simponi?
05-23-2015, 01:08 PM   #30
Maya142
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Joints do seem better but she is also on Medrol, so I don't know if it's the Medrol or Simponi. She has had diarrhea and urgency (many accidents) for the last few weeks, so wondering if there is something IBD related going on.

MLP you need to clear your inbox - can't send you a PM until you do!
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