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My 13 year old daughter started rituximab Monday. Can anyone share their experience? How long before you saw results? Do they get worse before they get better....because she seems to be the worst she's been in a very long time

Edited by chinc11
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My daughter(16) received rituximab for the first time in April. We did not notice any increase in symptoms, that I recall. We thought she seemed better ( a least a little) by about 2 weeks later (when she had her second dose) The doctors do not believe the ritux could have helped that quickly. She is now 4 months out and just doing great. She has been solidly improving after a nearly a year of monthly IVIG, IV solumedrol (high dose),. cellcept, and plaquenil.

 

Does your daughter have a diagnosis besides PANDAS? My daughter has anti-phospholipid syndrome.

 

Her doctors' do not expect any improvement from the rituximab to show until 4-5 months. I believe they will be stopping her monthly IVIG infusions, and seeing how she does. When we tried to stretch the IVIG intervals this spring (pre-ritux) she really declined. The hope is that Rituximab will reduce the need for the "band-aid" of IVIG. At least, that is how I understand it!

Was she given steroids with the infusion? Does she ever get IVIG? How often will she be getting the rituximab?

 

Are her symptoms primarily psychiatric?

Edited by powpow
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She is pandas but also had HE diagnosis from Duke. I don't really think it's HE however. She had plasmapheresis last month and we have been doing ivig every 2 weeks. She will have her second round of rituximab on Monday. Maybe I just need to sit tight? Just really frustrating because she has been so sick for so long. her OCD led to anorexia so we really need something to turn around soon.

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Why do you not think it is HE?

Duke has been very successful for my daughter. Sit tight- this all takes time. My daughter had improvement from pex, but it took a month and was only a relative improvement. This happened twice (pre-Duke).

They know what they are doing, I know it is so hard, but hang in there.

If you want to communicate privately, feel free to pm me.

I am sure they told you but most forms of AE take 18-24 months of proper, consistent , aggressive tx.

It sounds like she is getting that level of treatment.

thinking of you. How old is she?

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