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TOPIC: Rituximab and side effects

Rituximab and side effects 3 years 7 months ago #58105

  • grasshopper2
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My nine year old daughter is suppose to be starting rituximab next week. I have just recieved some info about it from the hospital and one of the things it says is that they don't know if it affects fertility. I find this really worrying. I am going to phone the consultant on Monday to ask about this, but in the meantime I'm just wondering if anyone knows anything about this?

Also, where it mentioned the flu jab the consultant has written on it saying she doesn't need this as she will only have the treatment once. I know pople on here have had high platelet counts for a couple of years from rituximab, but my daughter's consultant says if it works, it would last for 6-9 month. If this is the case then I can't work out what the point is of just doing it once. Surely if it does work then they would want to keep doing it so her counts are always normal or is that not the way it works? If it can affect her fertility then I don't think just 6-9months of normal counts is worth it.

My daughter tried steroids, it didn't work and thenside effects were terrible. Can anyone suggest any other treatment options?

BTW my daughter has had ITP for about 7 years and her count has never been above 30. She suffers really badly from fatigue and sometimes gets really bad nose bleeds. The consultant wants to try treatment now as he says fatigue and bleeding are only going to become more of an issue when she hit puberty.

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Rituximab and side effects 3 years 7 months ago #58108

  • mrsb04
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  • Diagnosis of ITP in 2014. Ex renal specialist nurse. I retired in Nov 2019 after 46 years on the front line. I firmly believe in empowering patients to be involved as much as possible in their care; always question medics about the evidence base they use.
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What ITP treatments has she tried so far?

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Rituximab and side effects 3 years 7 months ago #58109

  • grasshopper2
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Just steriods which didn't work and the side effect were horrid.

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Rituximab and side effects 3 years 7 months ago #58121

  • Hal9000
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grasshopper, when the consultant mentioned 6 - 9 months do you suppose they were thinking worst case (successful response)? That is, not give you false hope by quoting the average response - which is about twice that time.

About the fertility issues. Just off hand there probably isn't enough data to know the answer. Or, fertility issues have not been noticed with Rituximab so no one has bothered to do a study for it.

Hope this helps...

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