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KLW

Rituxan thoughts/advice needed

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Hello - I'm having to make a decision re: Rituxan infusions within the next couple of months and frankly, I'm scared. For anyone out there that has used it:

 

Did you have any adverse effects?

 

Did you do an overnight hospital stay to ensure no bad reaction within first 24 hours?

 

Has anyone done it outside of Georgetown with success?

 

Did you have to observe a period of time where your child was basically quarantined? (not real quarantine - but did you have to keep them home more than normal - away from stores, swimming pools, vacations, etc.)

 

Are you happy with the results?

 

I'll be talking to Dr. L. about this next week. She mentioned it as next step when we last spoke in Oct and we are currently doing high-dose SoluMedrol along with his monthly IVIg infusions. Now the more I read about it, the more concerned I become.

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I'm listening in - I have the same questions. I think Duke might be using this also. I'm only just starting to look at this, but my biggest question will be whether my son's particular symptoms are really worth the risks and/or side effects - I have no idea yet though.

 

Have you seen improvements with IVIg, but just not enough? Or no improvements?

 

Adding, there are some older discussions in this forum about this med:

https://www.google.com/#q=rituxan+pandas+site:latitudes.org

 

desperately sick/starting Rituximab infusions - what to expect ...

Edited by jan251

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Moderate positive response to IVIg. We've done high dose and monthly low dose (still do the monthly). His baseline Ig levels were very low. He is also on 2x/day Augmentin (was doing XR until they stopped making it). He can't function without antibiotics.

 

The best intervention has been the high dose prednisone (via IV as SoluMedrol). That has prompted him to choose to sleep alone for the first time in 13 years (!) But it has done nothing for anxiety, OCD, attention, handwriting or speech (DS has severe apraxia). I do believe his symptoms and duration of illness warrants use of Rituxan. I just wish there were a safer option even if it takes longer to be effective.

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We believe that Rituxan and PEX saved our daughter's life. Well worth the risks in our case. We are not out of the woods yet, but seeing improvement every month. She is also getting monthly IVIGs and had a tonsillectomy and adnoidectomy.

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Duke does use it, just not on a regular basis for all. My dd got it (not from them, our next MD gave it). Did zero for her. Then 2 PEX treatments were fabulous and after that she did Cytoxan. Doing great now.

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We work with Dr. L and had my dd 2nd infusion of ritux on Aug 2nd.    No major complications during or right after, only a slight headache.  She was not very fatigued. We did not keep her home we traveled to the beach the following week for RR.  She was fine.

We did in the Dr. L's office.  We treated all co-infections prior to Rtiux, plus we had done IVIG and her tonsils out prior to Ritux.  We're told to wait until 8 weeks after her 2nd infusion to see real improvements.  That's held true - we have seen small improvements in memory, and fine motor skills, still can't read and has major hearing sensitivity.  This started a year ago, we chased Lyme, and all other infections.  My dd is 15 and will have to redo 9th and probably 10th grades.  hope feedback helps

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