Share Facebook
Crohn's Disease Forum » Parents of Kids with IBD » Our Simponi Journey for my Kid


 
09-04-2014, 06:05 PM   #1
SupportiveMom
Forum Monitor
 
SupportiveMom's Avatar
 
Join Date: Mar 2013
Location: Toronto, Ontario

My Support Groups:
Our Simponi Journey for my Kid

Since I have not found so far any children taking Simponi (golimumab) for Crohns I thought I would start a thread to chronical our journey. Tonight D is getting her 1st loading dosage. Her prescription is 200 ml at week 0, 100 ml week 2, 100 ml week 4, and from then on 100 ml every 2 weeks. She is at 7-10 bowel trips a day. No blood but pain level is a 6 she says. We are nervous because we haven't heard of others experience. So if your kid starts this med for crohns you aren't alone!
__________________
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 ☆
09-04-2014, 06:15 PM   #2
FrozenGirl
Senior Member
 
FrozenGirl's Avatar
I really hope it works for you! I've heard great things about it in adults.
__________________
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)
09-04-2014, 06:16 PM   #3
Maya142
Forum Monitor
 
Maya142's Avatar
Good luck! I hope the shot is as easy for her as it was for my daughter!
__________________
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
09-04-2014, 06:54 PM   #4
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Good luck !!!
Fingers and toes crossed
__________________
DS - -Crohn's -Stelara
09-04-2014, 07:02 PM   #5
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
I pray it works.

Can you give a brief history of why this drug for your dd?
__________________
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
09-04-2014, 07:56 PM   #6
SupportiveMom
Forum Monitor
 
SupportiveMom's Avatar
 
Join Date: Mar 2013
Location: Toronto, Ontario

My Support Groups:
Thanks everyone for the encouraging words.

As many of you know D has tried Remicade & Humira without success (Remicade actually made her worse). The new GI, Dr. Griffiths (which is amazing btw, and is head of the IBD department at SickKids so I know I can't get any higher than that!) reviewed her time period on all the meds. Bases upon the different responses to the meds that we tried and the slides from the biopsies at both of her colonoscopies & MRE's there are 3 options left before surgery, 1 is Stelara, which based upon her history she wasn't strongly positive it would work. The 2nd is Simponi which she is now taking. It is her 3rd Anti-TNF and the doc's history with Simponi in similar kids in D's position has been positive. It is our best shot at this time.

Her dosages are aggressive and she should see change quickly, and will know if it has potential to work within a month.

The last option is a combination of 4 antibiotics. Because of D's allergy to medications this does come with a large risk and not as high of a chance to work as they have to replace one of the meds and find an alternative.

We have a scheduled surgery consult for October. We are waiting for a date for the pill cam and she may want to do a scope herself as it her previous GI that has done them before.

The nurse that came tonight told me he has taught 2 children on this drug for IBD. One was 18, the other 6-7 years old. So I know she isn't alone.
09-04-2014, 07:58 PM   #7
SupportiveMom
Forum Monitor
 
SupportiveMom's Avatar
 
Join Date: Mar 2013
Location: Toronto, Ontario

My Support Groups:
I should add Stelara was taken off the table. I am receiving conflicting reasons why. Nurse told me insurance would refuse it because of D's anyphlaxis reaction to Remicade. The insurance said the request was withdrawn. When I have the next appointment I will ask why.
09-04-2014, 07:59 PM   #8
Maya142
Forum Monitor
 
Maya142's Avatar
How did the shot go?

Keeping my fingers crossed for D! I hope this is her miracle drug!
09-04-2014, 08:01 PM   #9
SupportiveMom
Forum Monitor
 
SupportiveMom's Avatar
 
Join Date: Mar 2013
Location: Toronto, Ontario

My Support Groups:
She was Amazing!! The nurse did the 1st auto injector pen (100 ml). She did the second. Maya you were so right, much much better than Humira reain.
09-04-2014, 08:04 PM   #10
Maya142
Forum Monitor
 
Maya142's Avatar
That's great! I'm so very glad, S said the same. She said every time she does her Humira shot (she switched a while ago) she thinks about how little Simponi hurt. I wish we had increased the dose of Simponi before giving up on it though.

We are seriously considering Simponi for M, and she really liked the idea that it wouldn't hurt.
09-04-2014, 08:06 PM   #11
SupportiveMom
Forum Monitor
 
SupportiveMom's Avatar
 
Join Date: Mar 2013
Location: Toronto, Ontario

My Support Groups:
I'll keep you posted on the symptom changes as they come.
09-05-2014, 02:45 AM   #12
Sascot
Forum Monitor
 
Sascot's Avatar
 
Join Date: Aug 2011
Location: Falkirk, United Kingdom

My Support Groups:
That's great she has managed the injection. Good luck, really hope it works
09-05-2014, 06:37 AM   #13
SupportiveMom
Forum Monitor
 
SupportiveMom's Avatar
 
Join Date: Mar 2013
Location: Toronto, Ontario

My Support Groups:
If this is the drug that works for her it is great to feel like she will be able to manage this on her own with complete independence. Humira definitely didn't give her that. She teased I would have to come to university to give her injections if she was still on Humira. She is a bit groggy this morning but no rash or other issues.
09-05-2014, 06:48 AM   #14
Catherine
Moderator
 
Catherine's Avatar
 
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
Glad the injection went well.
__________________
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)
09-06-2014, 09:40 PM   #15
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
Glad it went well! Really looking forward to hearing how it goes for her. Keep us posted!
__________________

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.
09-07-2014, 08:28 AM   #16
SupportiveMom
Forum Monitor
 
SupportiveMom's Avatar
 
Join Date: Mar 2013
Location: Toronto, Ontario

My Support Groups:
New symptom either related to Simponi or to her other meds, or an combo of them all. Her hands shake, like tremors. She can't hold her hands out without them shaking. Noticed it at dinner last night. Hope it settles for her. She says it is annoying writing in school.
09-12-2014, 05:03 PM   #17
SupportiveMom
Forum Monitor
 
SupportiveMom's Avatar
 
Join Date: Mar 2013
Location: Toronto, Ontario

My Support Groups:
Week 1- hand shaking not as bad but now back to waking up every night 1-2x for the bathroom. Still going between 7-10x. Next week is the next dosage so I hope she is just sliding because Humira is now out of her system and not enough Simponi is in. Crossing fingers. She is starting to get discouraged already.
09-16-2014, 05:57 AM   #18
SupportiveMom
Forum Monitor
 
SupportiveMom's Avatar
 
Join Date: Mar 2013
Location: Toronto, Ontario

My Support Groups:
So it's just a few days before next dosage. Last two days she has spit up a bit in the morning. This symptom disappeared for her as of feb/March. I hope this stops very soon. If this becomes the new routine again she will drop weight rapidly again. She is back to only eating soups and crackers and rice & bread in hopes to calm things down.

She has a youth group trip on friday-Sunday to Cleveland and refuses to stay home. They are staying in a camp so she won't be far from a bathroom but I don't get how she will have much fun or have energy. To her own benefit or detriment she isn't giving up and is trying to stay as normal as possible. I am in awe of her strength.
09-19-2014, 11:47 AM   #19
SupportiveMom
Forum Monitor
 
SupportiveMom's Avatar
 
Join Date: Mar 2013
Location: Toronto, Ontario

My Support Groups:
Well yesterday was my tipping point. I have snapped. I normally keep things pretty close to the chest but yesterday & last night I lost it.

Emailed the IBD nurse at the hospital to follow up with the next appointments & surgery consult dates and "casually" mentioned no change since starting Simponi and should I have seen a change yet. As I stated before D's symptoms are coming back stronger (but when I emailed the nurse I didn't know how much worse). She was very attentive, called after emailing me, and said she should have seen some improvement already but it isn't time to give up on the drug yet. Staying on the Simponi we are starting the antibiotic cocktail as of Sunday.

The regimen consists of metronidazole, doxycycline, and vancomycin. It normally includes amoxyicillin but D is allergic to penicillin. It is a mega dosage of these 3 taken simultaneously for 3 weeks. We should see results in a week. The doctor even called me to explain some things to me about it right before I headed into the subway station. I just fell to the stairs in the middle of the city during rush hour and sat on the steps crying on the phone. I know this is the last step before surgery.

I am worried about her catching c diff as this will strip all the flora out of her gut. I am worried because it is cold & flu season and she will have nothing to fight off anything. I am scared. Scared for her, scared for how I stay strong for her, and scared for what this may mean in her future.

When I got home it just had to happen - fight between her & her dad that got pretty heated. It got so heated that she was screaming at him about how he didn't believe her at the beginning of getting sick (I thought they worked it out but she is still angry) and how he doesn't 'get' what is going on with her. Through her tears and screaming she explained how bad the pain is back, how she is actually going 10x on a good day, and probably closer to 15x, and how she is not sleeping due to her meds & the pain.

We just don't talk about the mental anguish we & our kids go through with this disease. I am digging deeper than I ever have to find the strength for the next few months. Belief is running thin. She is off with her sister for a synagogue retreat with her peers. She feels like crap but I know mentally this is where she needs to be. She is surrounded by people that know what is happening & will be there to help. Keeping her home will do worse to her emotionally than the exhaustion she will feel trying to participate. Me... I am going to spend the weekend finding the strength for the road ahead I knew we were going on that I have been trying to find the exit for. I really want to get off this road.
09-19-2014, 12:07 PM   #20
Momtotwo
Senior Member
 
Join Date: May 2014
I'm sorry she isn't improving on the Simponi. I hope more time will help but I can appreciate how discouraging and terrifying it has to be to watch symptoms return with strong intensity. Your daughter should not have to to deal with these challenges, and her anger is valid. I wish I could offer more. The uncertainties and fears are very difficult with IBD.
09-19-2014, 12:52 PM   #21
Tesscorm
Moderator
 
Tesscorm's Avatar
 
Join Date: Jun 2011
Location: Ontario

My Support Groups:
I'm so sorry you are all dealing with so many struggles and so much heartbreak. I don't think there is anything harder than watching your child suffer.

I hope the current treatment will help and you can avoid surgery! My aunt went through two years of difficulties, pain, urgency, etc. but they eventually found what worked for her and she has been great for 15+ years (if not more!). I really hope Dani finds this soon!

If, surgery is needed, there are also lots of success stories following surgery. Try to remember that this 'last' choice, may be just what takes her into remission!

Almost impossible to do but try to take one day at a time, sometimes one hour at a time!

Lots of hugs!
__________________
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
09-19-2014, 01:51 PM   #22
Maya142
Forum Monitor
 
Maya142's Avatar
What an awful and scary situation. We're all thinking of you and D. I hope Simponi and the antibiotics work SOON and you can avoid surgery. This is one of the most frustrating diseases, you never know when things will change and nothing is in your control. It must be so heartbreaking to watch her symptoms come back.

I'm surprised they told you Simponi would work soon - we were told it could work on the first dose, or at 4 weeks, or 6 weeks, but by 2 months we should know.

Is there anything they can give her for pain? Tramadol? It might even slow down the diarrhea (it causes constipation for most people).

I wish I could say more to help. IBD just sucks.
Sending HUGS!
09-19-2014, 03:46 PM   #23
SupportiveMom
Forum Monitor
 
SupportiveMom's Avatar
 
Join Date: Mar 2013
Location: Toronto, Ontario

My Support Groups:
She has semi solid stool. She is just still going a lot. She is very cautious about pain pills and hates the loopy feeling she gets. It is the exhaustion she can't take.

I know your daughter is taking simponi for something else Maya, what was it for? What is the dosage? D takes the 100 needle biweekly. I don't think the Doc was expecting her to get better quickly but expected some results. There is no reaction at all, if anything she is slipping worse. She is staying with Simponi with this antibiotics cocktail. If she does have her colon removed she will still need maintenance drugs and if she gets some results from it I would think that would be the drug we stick with. Honestly though I only found 1 kid on Simponi for Crohns and he is not good and wound up in the hospital a few weeks ago.

I have barely moved off the couch I am exhausted. I don't know how I would do this if it was me with crohns.
09-19-2014, 03:51 PM   #24
Maya142
Forum Monitor
 
Maya142's Avatar
S was taking 50mg every 3 weeks and then 50mg every 2 weeks. She was taking it for Ankylosing Spondylitis and it worked quite well for a while.

With M, we talked about doing 100mg every 3 weeks (after the loading dose).

I don't know any kids with Crohn's on it, but I have met quite a few parents who have kids with Juvenile Arthritis on it, and those kids are mostly doing well. An adult GI a Mount Sinai said that she had patients with Crohn's on it and they were doing well -- she was the one who initially suggested that Simponi might be an option for M.
09-19-2014, 04:10 PM   #25
SupportiveMom
Forum Monitor
 
SupportiveMom's Avatar
 
Join Date: Mar 2013
Location: Toronto, Ontario

My Support Groups:
Glad to hear of the happy stories. It is hard when you are on the front of the new meds to find success stories. In all fairness D has never responded to Anti-TNF so I'm not surprised this hasn't reacted yet. I'm heading to a meeting at Mount Sinai of Toronto end of the month and I'm going to see if anyone has any experience with it. D's doc wouldn't put her on a drug that has mostly bad results. I think I just haven't found the good stories yet. A friend of mine has just been suggested Simponi for her RA but she is an adult.

By the time the surgery consult is done D will be on Simponi 7 weeks. It should give us some idea by then if it will work. I am assuming the surgery won't be scheduled until probably late November so if things started working before then we can cancel surgery. If I can pick the date I'm going to try to push it to beginning of december to give her more time off of school. I'm told it hurts a bit walking up & down stairs and her school has a lot. I wouldn't want her rushing back unnecessarily.
09-21-2014, 12:09 PM   #26
SupportiveMom
Forum Monitor
 
SupportiveMom's Avatar
 
Join Date: Mar 2013
Location: Toronto, Ontario

My Support Groups:
Just wanted to post an update on the Simponi front - the 2nd treatment on Thursday went well. She actually did it in front of a few friends staying over. I was surprised. I think the girls felt a bit uncomfortable but D didn't care she didn't want to hide it.

No obvious difference before or after but I am glad Simponi doesn't hurt when injecting & no pain afterwards that she can go do the things she wants to do. Next needle on the 9th of October. For now we are sticking with 2 week intervals.

She starts the antibiotic treatment today so I really hope the side effects don't muddy up the results that is hard for us to tell what is the cause of what. Praying for no c diff from the antibiotics!
09-21-2014, 04:01 PM   #27
lgpcarter
Senior Member
 
Join Date: Jun 2013
Location: Canada

My Support Groups:
I'm sorry you haven't seen more of an improvement with Simponi. I was on it for several months and I can't remember how long it took for me to see results, but it wasn't immediate for sure. I was on the same dosing schedule as your daughter. I'm 34. I did see an improvement on it, but not enough to get me into remission.

I would press them about the Stelara next time you have an appointment. I really can't see the reaction to Remicade making a difference as they are two totally different drugs. Though there are probably even fewer kids on it than there are on Simponi.

Hopefully the combination of the anitbiotics and the Simponi will be enough to get her into remission.

Hang in there, you are doing an amazing job supporting your daughter.
__________________
Diagnosed in with Crohn's in large and small bowel in 2000.

Seton placement (2) and fistulotomy December 2013. Setons removed July 2014.

Laparoscopic Right Hemicolectomy July 2016, 25 cms removed

Current meds: Entyvio every 8 weeks, Imuran 50 mg, Flagyl and Cipro 500 mg twice a day
Previously: Remicade, Humira, Simponi, Pentasa, Sulphasalazine, Entocort, Stelara, Methotrexate, Prednisone

Last edited by lgpcarter; 09-21-2014 at 05:17 PM.
09-21-2014, 04:14 PM   #28
lgpcarter
Senior Member
 
Join Date: Jun 2013
Location: Canada

My Support Groups:
I've been on metronidazole on and off for years and it is a lot easier to take in capsule form. The tablets are very powdery and taste awful! It also makes me nauseous and decreases appetite. Just a head's up, as the antibiotics might make her feel pretty awful.
09-21-2014, 04:19 PM   #29
Maya142
Forum Monitor
 
Maya142's Avatar
I have to agree - since D has never responded to an Anti-TNF, it would definitely be worth trying Stelara since it is supposed to work well in people who fail Anti-TNFs. That is why we are holding off on trying Stelara for M and would try Simponi or Cimzia first - since she initially did respond well to Anti-TNFs.

I haven't actually ever heard of anyone having a reaction to Stelara, but I've only met two adults on it (one for Crohn's, one for psoriatic arthritis).
09-21-2014, 04:33 PM   #30
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
I don't know if your daughter is on a probiotic. If she is not I would highly reccomend starting her on one. Hopefully might help prevent Cdiff or other issues with the antibiotics.
Reply

Crohn's Disease Forum » Parents of Kids with IBD » Our Simponi Journey for my Kid
Thread Tools


All times are GMT -5. The time now is 07:37 AM.
Copyright 2006-2017 Crohnsforum.com