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  • 1.  TED in 16yo female

    Posted 04-10-2025 16:05

    Dear NANOS group

    I have a 16yo F  with TED and progressive proptosis and CAS 5

    -mild enlargement of eoms but mostly fat enlargement 

    She wants to have teprotumumab but not approved due to age

    What other options other than IV steroids? Which still not optimal due to age

    Are any of the current study trials accepting 16yo pt?

    Thank you for your guidance 

    Claudia 



  • 2.  RE: TED in 16yo female

    Posted 04-10-2025 22:02

    This is tough. You could try steroids via eugogo dosing. 500 mg iv weekly for 4 or 6 weeks and if it works additional 4-6 weeks .

    Teprotumumab can also be given if insurance can authorize 

    Clinical trials will likely not recruit under 18

    Orbital radiation is an option although best to try one of the above first 

    Madhura



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    Madhura
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  • 3.  RE: TED in 16yo female

    Posted 04-11-2025 07:56
    Alternatively, you could ask one of the FcRn inhibitor manufacturers if they are willing to provide medication off trial as an expanded patient access; or if you want to avoid steroids you could consider tocilizumab or rituximab, but all of these options are immunosuppressive...

    Best,

    Drew



    Original Message


  • 4.  RE: TED in 16yo female

    Posted 04-11-2025 09:14
    Not sure if this posted 




    Original Message


  • 5.  RE: TED in 16yo female

    Posted 04-11-2025 09:28
    I have used tocilizumab (in conjunction with rheumatology) in a similar patient as well as, in a separate patient low dose orbital irradiation. A key factor in children with TED (maybe even more important than in adults- though important in adults as well) is getting the thyroid disease immediately controlled and keeping it controlled. 16 is a tough age for compliance. I have had to get buy in from parent as well as make sure they have labs checked at least q3 months. No smoking tobacco or marijuana (both have thiocynate), check for Celiac with labs, get them on plant based anti-inflammatory diet, exercise goal of 300 minutes a week, stress reduction, sleep hygiene. 



    Original Message


  • 6.  RE: TED in 16yo female

    Posted 04-14-2025 22:50
    thank you everyone for your guidance
    - I shall discuss the options with my pt

    Nice week!

    Claudia



    Original Message


  • 7.  RE: TED in 16yo female

    Posted 04-18-2025 11:47

    This is so difficult. You could try steroids via eugogo dosing. 500 mg iv weekly for 4 or 6 weeks and if it works additional 4-6 weeks .

    Together with retrobulbar steroids once every month with regular control of intraocular pressure every week

    Teprotumumab can also be given if insurance can authorize 

    Clinical trials will likely not recruit under 18

    Orbital radiation is an option although best to try one of the above first 

    Sent from my iPhone



    Original Message


  • 8.  RE: TED in 16yo female

    Posted 04-11-2025 08:45

    My rheumatologists will give retuximab for severe thyroid eye disease in a kid.

    For Tepezza, even if you're able to get it, I don't know that I can trust a 16 yo to protect her ears from noisy enviroments...




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