Share Facebook
Crohn's Disease Forum » Treatment » Simponi Support Group


08-27-2015, 05:08 PM   #1
Pixie100
 
Join Date: Sep 2013

My Support Groups:
Simponi Support Group

About this Support Group

A new support group for those undergoing treatment with Simponi.

Members

Charlotte., lchele1203's Avatar lchele1203, Pixie100, Toni68
08-27-2015, 05:19 PM   #2
Pixie100
 
Join Date: Sep 2013

My Support Groups:
Hello everyone,

I have Crohn's and Behcet's disease and took my first loading dose of Simponi yesterday (200). I also take Metbotrexate. I have found little information on the off-label use of Simponi for.Crohn's and would appreciate hearing from others who are giving this medication a try. Thanks.
08-27-2015, 06:38 PM   #3
Maya142
Forum Monitor
 
Maya142's Avatar
My daughter is on Simponi and it is working for her. She has both Crohn's and Ankylosing Spondylitis. It is working well for the Crohn's, and her AS has definitely improved but we're still hoping for more improvement.
__________________
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
08-28-2015, 07:51 AM   #4
Charlotte.
Senior Member
 
Join Date: Nov 2014

My Support Groups:
Oh, that's brilliant news, Maya. So nice to hear it is working for your daughter. I hope it starts working for me soon, as well.
__________________
Crohn's Disease: diagnosed 2014 (at 24), symptoms for 10 years now
Enteropathic Arthritis, Sacroliitis, Osteopenia

Stelara; Uceris; Lansoprazole; Domperidone.

Previously: Remicade, Humira, Simponi, Azathioprine, Methotrexate, Sulfasalazine, Entocort, Uceris, Prednisolone, TPN, EEN, different alternative treatments.
08-28-2015, 11:41 AM   #5
lchele1203
 
lchele1203's Avatar
 
Join Date: Jul 2014
Location: Houston, Texas

My Support Groups:
I have been on simponi for my Crohns since Feb 2014. I use to have a flare and hospitalization every year but so far no flare or issues. I am having my yearly colonoscopy next month so we will see how things look. My SED rate and other blood work look good. I have tried Humira but was allergic to the medicine. My GI has always wanted me to try Remicade but my veins are so bad I just didn't want to go that route. So far the simponi seems to be working for me.
08-28-2015, 11:44 AM   #6
Charlotte.
Senior Member
 
Join Date: Nov 2014

My Support Groups:
Good news, Ichele1203, thanks for sharing! Crossing my fingers that the scope is clear.
What kind of allergy symptoms did you have while on Humira?
08-28-2015, 11:46 AM   #7
Maya142
Forum Monitor
 
Maya142's Avatar
What dose are you on Charlotte? My daughter needed a higher dose for Simponi to work -- she is on 200mg per month instead of the usual 100mg.
08-28-2015, 11:49 AM   #8
lchele1203
 
lchele1203's Avatar
 
Join Date: Jul 2014
Location: Houston, Texas

My Support Groups:
When I was on Humira after I would give myself the shot my leg would swell and I tried the shots a few times and it just got worse. My GI doctors do not prescribed simponi for me because they said it is not approved for Crohn's so I had to have my Rheumatologist subscribe it. From all the information I have on simponi you are not suppose to go over 100 mg monthly for UC or Crohns.
08-28-2015, 11:54 AM   #9
Charlotte.
Senior Member
 
Join Date: Nov 2014

My Support Groups:
Oh, that sounds frightening, about your leg. I've been having side effects concerning skin (rashes, flush, sunburn-like-rashes, eczema) and sinus issues (still dealing with that) but no real allergy.
08-28-2015, 11:54 AM   #10
Maya142
Forum Monitor
 
Maya142's Avatar
My daughter has always needed higher doses of biologics for them to work. Most recently she was in a high dose Remicade (20mg/kg every 4-5 weeks) trial for juvenile arthritis patients.

She is treated by a pediatric rheumatologist and pediatric GI at some of the best hospitals in the US. She has very aggressive Ankylosing Spondylitis which has already resulted in some fusion - we want to minimize damage as much as possible.

Children and teens tend to "burn through" or metabolize drugs faster and often need higher doses than adults.
08-28-2015, 12:01 PM   #11
Charlotte.
Senior Member
 
Join Date: Nov 2014

My Support Groups:
That seems a lot, Maya142, 20mg/kg. I was on 5mg/kg as far as I remember, which is the standard dose for adults. Interesting to hear that it sometimes does depend on the dose as well because I was told the dose change would not work that much.
I'm on 100mg/month and my Rheumy did not believe me there are syringes of 100mg. I had to show him a photo!
My GI told me 100mg is the highest dose allowed for UC/Crohn's, normally it's for people weighting more than 80kg, which I don't, so it's already quite a lot to his mind.
I hope that is enough for me.
Maya, did your daughter have a positive effect on either the Spondylitis or Crohn's on the 100mg dose already but not strong enough or was there no effect at all on 100mg?
08-28-2015, 12:08 PM   #12
Maya142
Forum Monitor
 
Maya142's Avatar
5mg/kg is the standard Remicade dose for adults. Kids often need 10mg/kg and there are very small studies showing great success at higher doses like 20mg/kg for aggressive juvenile arthritis or pediatric uveitis.

The dose certainly does make a difference - there are plenty of studies that show that trough levels of Remicade correlate with remission.

M did see some improvement on the 100mg Simponi but it would not last the full month (not even close to the full month before her symptoms returned). So we increased the frequency of the 100mg shots to every 2 weeks.
08-31-2015, 12:39 PM   #13
Pixie100
 
Join Date: Sep 2013

My Support Groups:
Hi everyone. Thanks for your responses.

Maya and Ichele, it's s nice to hear Simponi success stories! And I hope that you too Charlotte, will soon see equally positive results.

I'm wondering about side effects. I started Simponi Wednesday morning (200 mg) and was awakened from a deep sleep early Thursday morning with severe body aches. A headache soon followed. Hours later, I developed patches of facial herpes.

I contacted BioAdvance to inquire as to the expected duration of the side effects--but they told me that their protocol requires that I contact my doctor immediately. I'm now experiencing intermittent chills.

Has anyone experienced side effects?
09-01-2015, 06:44 AM   #14
Charlotte.
Senior Member
 
Join Date: Nov 2014

My Support Groups:
Thank you, Pixie 100, I hope that, too.

I haven't experienced any side effects so far, some headache but it could be due to the whether as well, so I would not relate it to Simponi.

I would also recommend to contact your doctor as soon as possible. I had side effects with Humira from the first injection and it just got worse with the following injections but you should discuss that with your doctor. I'm crossing my fingers that these symptoms only a reaction to the first dose that you are experiencing.
09-01-2015, 08:59 AM   #15
Maya142
Forum Monitor
 
Maya142's Avatar
No side effects here - I hope you're able to talk to your doctor soon!
09-01-2015, 01:03 PM   #16
Pixie100
 
Join Date: Sep 2013

My Support Groups:
Thanks so much for your replies!

I'm pleased to hear that you, Charlotte, and your daughter Maya, are free from side effects. My GI emailed early this morning and recommended I stay the course and keep him updated. I must say that the hope for restored health that comes with trying a new medication keeps me going.

Is Methotrexate part of your treatment plan?

I've been on STD since the beginning of June and need to decide whether to apply for LTDI in case I require a graduated return to work. It's hard to predict the future and there are so many unanswered questions. And I do feel the need to manage my employer's perception of my health status. I've found there's a fine line between sharing too much versus too little. Always lots to consider as a Crohnie!
09-02-2015, 12:50 AM   #17
Charlotte.
Senior Member
 
Join Date: Nov 2014

My Support Groups:
Good that you could talk to your GI. I did not tolerate Methotrexate.
Wish you all the best, Pixie!
09-17-2015, 04:01 AM   #18
Toni68
 
Join Date: May 2015

My Support Groups:
Hi I'm taking simponi 50 mg once a month as mentioned in a different post this was supposed to be upped to twice a month but when a new doc came on board he wanted to wait for various tests even though we know since I had a pilcam done in March this year showed inflammation in small and large bowel where resection was done in 2013.calprotectin came back at 366(took 2mnths to come back)while waiting for result an odd thing happened I started getting bruising on both legs well away from injection site? So bloods were sent to hymotology and know have an app with the coagulation disorder clinic?happened again this month they don't think its simponi related( allergic to hum ira) have really bad llq pain don't know if it's bowel or hip( have rhemotology app 5/2016)apart from simponi I've been on entocort since diagnosis (October 2012) though only take 3mg daily ant see the point really
Reply

Crohn's Disease Forum » Treatment » Simponi Support Group
Thread Tools


All times are GMT -5. The time now is 05:49 AM.
Copyright 2006-2017 Crohnsforum.com