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Fed up with inhibitors and looooong ITI?

Noora
Wed, 29 Nov 2017 19:31:18 GMT

As a parent to a 7 year old Haemophilia A inhibitor patient I would like to ask how fed up are you already with ITI? We started ITI therapy 5,5 years ago and inhibitors still exist. Our daily life goes well, Rituximab treatment helps for 6 months but when B cells return, also inhibitors return. We started with Rituximab 2,5 years ago (when 3 years ITI did not work). I would like to find a family who has gotten the hoped results after years of ITI... :)

Ann
Wed, 29 Nov 2017 20:00:12 GMT

HI! We met last year in Dublin. I have a 14 year boy and I'm sorry to say we are in the same situation as you. 3 years ago we started with Rituximab/Mapthera and every 5 or 6 month we do it again, slowly. slowly maybe we see some result - the high level is not so high.... Let's talk more in the week-end, I understand you are going to Barretstown again. :-)

Lisa
Tue, 05 Dec 2017 15:39:27 GMT

Hi Noora, I can't imagine how fed up you are after all those years....we are only just coming up to our first year and are bored already....not used Rituximab yet as still holding out hope......