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Any kids on Simponi /Golinumab?

Now that D is moving off Humira and onto Simponi I was hoping there was someone else's kid on it. Anyone? First dosage being shipped to our house Tuesday. Hoping it goes well!
 
Loading dosage of 2 needles to start and then 1 every 2 weeks as standard dose. Hear it hardly hurts compared to the burning of Humira. I hope it is true. I'll keep you posted how she does. One positive is we should see results within 4 weeks. No waiting 6 months like Humira for a possible change.
 

Maya142

Moderator
Staff member
I had never heard that - we were told 3 months for my older daughter, but I guess the dose was different?

S really did say that it was the least painful shot by far (she has been on Humira, Enbrel, Simponi -- all shots!). If you're doing the shot and don't mind syringes, she said the syringe was even less painful than the pen.

D is getting a different dose - for M we discussed Simponi every 3 weeks instead of the regular 4 (after the loading dose of two 100mg shots).
 
I was told we are doing the dosage aggressively. Maybe that is what changes it? Doc wants to know by mid oct. when we have the surgeon consult which way we are going. 1 month on this. If improvement then we will get the consult with the plan of delay of surgery. If no improvement after a month we will go with the 4 antibiotic cocktail around the time of the consult. It will take about 2 months for a surgery date so if the antibiotics don't do anything then surgery continues. Of course all things are subject to change... I hope for the better.
 
Maya142, was simponi one of the drugs that possibly treat both CD and SpA but no trials yet on SpA?
 

Maya142

Moderator
Staff member
No, it's actually approved for SpA (in adults)! It's in phase III trials for kids with Juvenile Idiopathic Arthritis (JSpA is one of the subtypes of JIA).

Stelara is the one where there has only been one trial in AS/SpA. However, it is approved for Psoriatic Arthritis, which is pretty similar.
 

Maya142

Moderator
Staff member
My older daughter was put on it at 18, but two pediatric rheumatologists have told me that they use it off-label for younger kids - one said she had a 11 year old patient on it.
 
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