Length of Actemera Treatment

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New Member

Date Joined Nov 2016
Total Posts : 1
   Posted 11/22/2016 11:36 AM (GMT -7)   
Hello, our 4 year old daughter was diagnosed with systemic JIA a year ago. She spent 8 days in a Hospital with high fevers and rash and joint pain. She had been having joint pain in her knees for a couple of months prior to the hospital stay. They put her on Pred. to start with (up to 30mg for a time) and then started her on once a month doses of Actemera. She has done very well with it. She is currently off of Prednisone and just receiving her once a month dose of Actemera. She has the odd time where she will complain of knee pain during the night and seems to need her naps a lot. If you would be with her you wouldn't know anything was wrong.. Her last Lab work came out perfect making us think it is remission.
Our question is what is a normal treatment schedule for Actemera?? Our Doc. says he wants her on monthly doses for 2 years followed by a slow taper kind of like Prednisone. Is this really necessary? If you want more info just ask. Thanks

By the way we are currently in Lima Peru for 3 years with our Church.

Veteran Member

Date Joined May 2013
Total Posts : 548
   Posted 11/30/2016 5:58 PM (GMT -7)   
Hi misionperu and welcome.

None of us are Doctors on this board so everything you will hear is incidental and should not be taken as sound advice as to how to handle care for your child. Only a Doctor has the expertise needed to properly outline a care plan specific to her needs.

I have had RA for 20+ years and was first afflicted at age 23. I have been on several biologics and have taken them every week for the last 20 years.

I have also had a few brief periods of remission during this time. RA can go into remission and then return unfortunately and in my case both times it was very severe when it returned. I would urge you to follow the care given by your physician and if you have concerns regarding the treatment plan they have outlined to question the Doctor as to their reasoning in person and if you are still not satisfied then take your daughter for another opinion.

I am glad your daughter is doing well and hope that this continues!
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