Crohn's Disease Forum » Treatment » Simponi for Crohnís


03-07-2018, 08:35 AM   #1
gger7
 
Join Date: Feb 2018
Location: Antrim, United Kingdom
Simponi for Crohnís

Hi, I have been on Humira injections (40mg every 2 weeks) since September. They havenít helped my Crohnís much, GI thinks this is because the rheumatologist was the one who arranged the prescription so I didnít get the 4x loading dose. Rheumy is now changing me to Simponi as Humira not helping my Ankylosing Spondylitis as much as they would expect. The research seems to say Simponi is good for UC but I canít see much about Crohnís. Also Iím worried that Iíll miss the loading dose again and might get stuck with the same lack-of-reaction for the IBD. Anyone have any info or experience to help? Thanks in advance
03-07-2018, 09:11 AM   #2
ronroush7
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I would maybe ask your gi about the Simponi. Let us know how you are doing. I am going to tag Maya 142.
03-07-2018, 12:45 PM   #3
Maya142
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My daughter did Simponi - she has Crohn's and AS. We used the UC dosing so she would get the loading dose (they fudged her diagnosis and said she had "colitis" instead of Crohn's ileocolitis).

It work wonders for her Crohn's. It did take a couple months, but it worked really well for her Crohn's.

It worked for her AS, but not enough.

Definitely get your GI to prescribe Simponi or have your rheumatologist use IBD to get the loading dose and the IBD dosing (100 mg per month). It is double the AS dosing (50 mg per month).

For what it's worth, my older daughter who only has AS tried Simponi. The AS dosing was way too low and it only lasted about 2 weeks of the month. We weren't able to get a higher dose approved (this was when Simponi had only been out a few years) so she had to switch biologics.
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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
03-07-2018, 12:46 PM   #4
Maya142
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Wanted to add - both my girls needed Humira weekly plus MTX before it worked for their AS. You could try that first.
03-08-2018, 10:22 PM   #5
Lady Organic
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I think it would be important for both your specialists to consult each other on your case, instead of working apart. If you ask they should be able to do it.
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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
03-09-2018, 02:42 AM   #6
gger7
 
Join Date: Feb 2018
Location: Antrim, United Kingdom
Thank you Maya142. I phoned the rheumy nurse and explained my worry. She didnít even realise there was a loading dose for Simponi for IBD. She said their department doesnít have the budget to authorise the higher IBD dosage. My rheumy consultant will speak to my GI consultant when he is back from leave, in the meantime everything is on hold. I see my IBD nurse on Monday for an iron infusion so will speak to her about it then so she can prepare the GI consultant. They wonít continue the Humira because they say it isnít working at all for IBD and not well enough for the AS, hopefully Iíll mke progress soon. Thanks again
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