Low dose Rituximab ITP treatment - any experience ?

Hi, I've just completed my 4 weeks of Rituximab infusions in response to Platelet counts that fell to single figures. I have been given the low dose regimen of 100ml per infusion which is was told was the standard ITP dose in my region. Does anyone have any experience ? Is it as effective as the high dose options ? Does it work as quickly ? I know I may have to wait for 3 months or so to see if it has been effective but any observations would be very useful.

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  • When I was given Rituximab I received 700mls per transfusion for 4 weeks which is far more than the 100mls that you have been given. They told me that it would take up to 12 weeks before any effect may be seen but unfortunately it did not work for me and in fact on the morning of my 4th transfusion I dropped down to 0. After that I did the 4 day Dexamethasone pulse which also made no difference and then it was on to NPlate.

  • I had low dose Rituximab in Aug 2014 over 4 weeks - I had been diagnosed in march 2014 with platelet count of 2. to date my platelets have steadily increased. My last check up in may 2016 platelet count was 92. So far so good! Fortunately I don't have any symptoms except bruising so I just get on with life good luck with your treatment.

  • Some people talk about low dose Rituxan, but I was told the dosage was based on a person's weight. Also, now that you finished the 4 weeks, are you taking anything ❓ I just finished my 4 weeks and my Dr. is reducing the Predisone I've been taking. I'm down to 10 mg.

  • The standard dosage was based on the dosage that was originally given to treat b-cell lymphomas and that was adjusted for the patient's weight. However, there were some trials done to test the effectiveness of giving ITP patients just a fixed dose of 100ml a week for 4 weeks regardless of their weight and that's what I was given. See this link

    haematologica.org/content/9...

    I am not taking any steroids because I don't respond to them. I did need an IVIG during the rituximab treatment because my count dropped to 8. That was 5 weeks ago and I find out on Tuesday what my platelet count is now. I'm hoping the Rituximab might have started to work but it might be a bit soon as my last dose was only a month ago.

  • Hi . My platelets used to go to 1. Last year I had the course of Ritaxamub and my last dose was New Years Eve 2015. Since having it done my platelets have stayed at 348 sometimes they go down by 10 or so but then they go back up. I am really glad I had it done. It is worth having the flu jab. I go for regular checks but my con sultana at Wexham Hospital has been brilliant . Can't thank the staff there enough

  • Hi Nazmeen. Thanks for that. It's encouraging to hear good news stories.

  • Im on second dose of retuxin infusion. I have 2 more scheduled this month. Im on 70 mil prednizone now, tapering from 120mil. I have had two severe nose bleeds that took me to er, but third one i delth with it at home. my body feels so out of place and my mind, i think its the prednizone. i went from a 4 to 55 this past weds. my infectious desease dr doesnt think it was brought on by the flu shot, as one dr suggested

    .

  • Is it causing insomnia

  • yes

  • I took Rituximab about 4 years ago and my count shot up, then promptly fell gradually over a few weeks. I was on the low dose, but I was then put on Romiplostim injections which worked and have continued to work. No one knows what will work for each individual, everyone is different. I'm sure you will find a drug that works for you, in fact it might be Rituximab! Good luck.

  • Thanks for your response and kind words :-) My platelets were 68 when they were tested 10 days ago so I'm hoping we are seeing a gradual rise !

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