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Rituximab for a third time or eltrombopag?

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14 years 4 months ago - 14 years 4 months ago #20335 by angeleyes_
OMG I am so happy to see this has a discussion page again - I have missed you guys!!
Hey for anyone who remembers me and to anyone new.
I'm Corran, 38yo from Edinburgh, Scotland. I was diagnosed in Sept 2006, had pred, rituximab, winrho, rituximab, IvIg (in that order) over the years. The rituximab is the one that seems to work for me although I do 'relapse' after about 18-24 months.
This time my count has been at its lowest, dropping to 2. Its currently at 16 with no treatment. One of the haematologists was all for me having rituximab for a third time but he has now left the hospital I go to, and the other haematologists are wanting to try me on eltrombopag (I refuse point blank to have my spleen out)
Their reasons for not doing rituximab again is they don't know the long term side effects, but seeing as though eltrombopag has only been around for a few years surely there would be more of a worry of long term side effects from that?
Has any of you lovely people had rituximab 3 times or more? or had eltrombopag? know of any side effects?
I'm due to get another blood check tomorrow (saturday) as I travel all over Scotland with my job now and am never able to go to the clinic, which is stupidly on a Thursday afternoon!
Many thx
Corran x

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14 years 4 months ago #20360 by Dean
I have had Rituxan twice, the last one being two years ago. The Dr is suggesting Promacta if counts drop again. Sorry not much help on eltrombopag.

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14 years 4 months ago #20373 by Ann
Promacta is eltrombopag, Dean. Except it's called Revolade in the UK. Several threads here about Promacta, angel. We can't get it in England so I am using romiplostim (Nplate) which has similar effect but is a weekly injection which I do myself at home. So that's another possible alternative for you. I actually prefer the injection to taking tablets which I am hopeless at as I can't swallow them!

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14 years 3 months ago #20839 by kjones
I have been taking Promacta for close to two years now with no discernable side effects. I have actually been decreasing my dosage over time and am currently taking 50mg every 3 days. My last count was 127 and 70 three months before that. I am seeing my dr every 3 months now. We will probably change to 25mg every other day afterr my next visit and my 50mgpills are used up. I resisted taking promacta at first due to all the warnings on the label. When my counts dropped back down to 19 and I was hospitalized with a gi bleed, I was ready to try a new treatment. My last sustained response was after receiving ivig and high dose dex. Unfortunately the side effects were so severe I could not do anything but lay around the house. My head was filled with the sound of my breathing and pulsing blood. I was so dizzy I could not drive, I couldn't read a book and I couldn't sleep well for over a month. There was no way I would ever do that treatment again unless it was life or death.

I don't mean to sound like an advertisement but my life has changed since I started on promacta. As many of you can attest, living with ITP is like "waiting for the other shoe to drop". We have great hopes for each treatment and time and again are disappointed with either the results or unacceptable side effects. We do daily body checks for signs of low counts, fatigue, worry over catching colds. I realize that promacta will not work for everyone, but it has been life changing for me. I no longer think about my ITP on a daily or even weekly basis only when I am sick and then I am watchful for signs of my counts dropping. I do not miss the rollercoaster ride of ITP and fluctuating counts. I like thrill rides as much as the next person but I am grateful for my calm life right now. Maybe "the other shoe" will never drop!

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