rituximab infusion: Hi all please help me My kid is... - NRAS

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rituximab infusion

Srinuwgl profile image
7 Replies

Hi all please help me

My kid is 7 years old she has given rituximab infusion 2 times but problem not solved her hemaglobin is some times 10.7 and some times less then 9

Recently she was given rituximab infusion in six months back at that time of rituximab infusion her got some rashes oh body

Is that means rituximab infusion is not worked on her?

And recently she got cold and cough and from that time their is change on her face became Paul and change in urine color redish

Any reasons for not working not rituximab infusion

Please help me

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Srinuwgl profile image
Srinuwgl
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7 Replies
nomoreheels profile image
nomoreheels

I'm sorry to hear this, it must be very worrying for you. I would urge you to contact your child's Rheumatologist, or biologics nurse. We're not medically trained here, we're patients & the symptoms you describe I think should really be reported, you need to receive advice from the original prescriber.

Srinuwgl profile image
Srinuwgl in reply to nomoreheels

Thank you

nomoreheels profile image
nomoreheels in reply to Srinuwgl

You will contact your child's Rheumatologist won't you? I hope she is ok. I don't want to alarm you but the symptoms you mentioned, Hb, rash, cough, coldness & change on her face (though not sure what that means, sorry, unless you mean pallid or pale) really need checking. Also if her urine is reddish that could mean there's some blood there & needs analysing. If need be & you can't see anyone take her to her doctor.

Srinuwgl profile image
Srinuwgl in reply to nomoreheels

Thank you for reply

we met doctor , but as per her , rituximab is not worked on her body , and they also did bonemarrow this time , because , we are facing the fall of hemoglobin for last one year , but this time platelets count also gone done , so doctor did bone marrow , and waiting for results

i just want to know any conditions for rituximab now working on a body , Means any pre conditions should be checked before giving rituximab infusion

like any test to know , body conditions, will rituximab work on the person or not ?

nomoreheels profile image
nomoreheels in reply to Srinuwgl

I'm pleased you've met with her Doctor & he is checking further. I hope the results are clear & they are able to resolve the issues. It seems so unfair that your daughter is facing them but I'm sure with yours & her Mother's support she's being well cared for.

Those who are being treated with rituximab here have autoimmune Rheumatoid Diseases. How many it's working for I just don't know I'm afraid but if it isn't working then it's stopped & another biologic tried.

phil_54 profile image
phil_54

Hi as nomoreheels mentioned we are not medically qualified so all i can do is give you my story after having the infusions, First thing is they dont start to work for up to 16 weeks so not sure if this applies to side affects but i have noticed recently i have terrible rash over my arms doesnt really itch its just there all the time, As far as i am aware my bloods have been ok until last week, I got a call from the LED nurse to say the markers on my liver have gone to 114 but dont know if this is because of the MTX or not it may mean i have an inflamed liver, Rituximab can have fairly serious side affects but are usually rare

I would suggest getting back in touch with the consultant or whoever the prescriber was and point out all your concerns as nomoreheels also suggests

I know this probably doesnt help much so wish you all the luck in the world.

Cheers

Srinuwgl profile image
Srinuwgl in reply to phil_54

Thank you

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